Another day to celebrate! They took the pic line out! That's the last of the IV lines. They took the final stitch out of her head from the EVD line. All that is left is the feeding tube. Tomorrow she takes the swallow test again and if she can swallow without any aspiration, they will start feeding her real food. She says the first thing she wants is a snowcone!! When she is eating enough for a high enough caloric intake, they will take the feeding tube out.
Wouldn't you all love to have this problem? She needs to double the amount of calories a normal 16 year old would eat because of the amount of work her body will be doing through this relearning process. Shan has never been a big eater so this will be a challenge for her-- but again, who wouldn't love that challenge!
Shannon has gained a lot of strength over the last 24-36 hours. About a day and a half ago, she was needing full support for getting up and moving to the chair, but each time she did, as I held her as she got up, I could tell she was getting stronger. Earlier this afternoon, she needed help getting to the sitting position, but with my arms wrapped around her for balance and security, she stood on her own, took probably 15 steps into the bathroom and back!! A major improvement that the Occupational (OT) and Physical (PT) therapy folks will love.
This morning PT/OT worked her really hard but she was right in there with them. So this was before her feat of standing up herself--the therapist left the wheelchair 3/4 the way across the room, she walked it with much help and a few taps to get the right foot to move at the right time. When they reached the therapy pad, they made her stand for the longest time. It was pretty difficult for her. She was still having a hard time holding her head up and her body would often collapse but with a little help she would pull herself back upright except for her head. It just seemed too heavy. When the therapists said she was finished, she shook her head no and continued to work on standing there for probably another 1-2 minutes! What a fighter!
They had her catch the beach ball and throw it again. She did well there too. Then they laid her on her belly and showed things to her that were probably 30" in the air. She was to hold her head up so she could see the item, reach for it and put it in the basket. That was hard. With a lot of effort, time and a little help she got 2 done. Then she laid on the pad exhausted! They gave her a couple of minutes and then had her do it again. This time they wanted 5 and they got it!! We are so glad she is such a high achiever!! Then she made her way back to the wheelchair and was willing to let me take her for a walk to the 3rd floor patio outside. We sat out there for about 10 minutes before she just really wanted to get back to bed. It was great. She loved breathing in that fresh air.
Speech therapy brought a few new interesting steps. Someone had suggested we give Shan a white board so the therapist brought one in. This is where the brain is so fascinating. Remember I talked about the brain reconnecting from the ground up? Shan took the marker and white board, and wrote a sentence-rather a question of 5 words but only the first 2 were legible. She tried again but the connections were just not ready yet. So the therapist gave her a picture board of a keyboard and told her to spell out the answers to the questions she would give her. The first few were yes and no questions. The therapist then asked, "do you live in Salt Lake City?" and Shan tapped out yes. I said, "no, Shan, you don't live in SL but you have been in Salt Lake for a couple weeks in the hospital. Where do we live? She tapped out A-l-p-i-n-e!! It was cool. She has tried to whisper words today but not as many as yesterday. In time.....
These are all little baby steps but to us again, as I said before, they are miraculous! Truly we have seen where you spend months doing the same kind of activity and never getting the connections made for the correct response. Everyone who is familiar with OT, PT or Speech therapy know that what Shannon is doing is incredible! Dr. Hubbard from the picu came by just to see her progress. She was so excited and said in her line of work, they don't get to see many of these kinds of successes and she just has to keep returning to see how Shan is doing. We will be excited to one day go marching in to the picu with Shannon in the lead!
Shannon is off all the sedative drugs now but some of them can stay in the system for up to 72 hours. It has barely been 24. She has been so exhausted today and so has not been awake much except for therapies and some of the doctors' visits. But even so, they tell us that all this work that she is doing and having been in bed for as long as she has been is very hard to recover from and it takes a long time. We remain ever so optimistic because of all the miracles we have seen to this point and because of your prayers. There is not a doubt in my mind of the power of prayer! Even when fear tries to creep in, prayer can chase it away. Even with all these struggles and challenges, God's plan is so perfect. Going through this is no fun for us or for Shan and given a choice, we would not go through this. But as I think of the many sweet tender moments I have had and the answers to so many prayers--big and little, and the joy we feel over the little successes, I recognize the wisdom in God. We are learning so much.
Let me end with this thought. As I talked with Aaron last night, he made the comment about how our lives on the outside of this situation has pretty much stopped with the exception of one or two things. Being very very busy people, we all of a sudden can drop out of life and things go on. When we are so busy and stressed over how busy we are, we need to stop and remember that in reality, we could probably drop 95% of all that we do for that which matters most.
Pheobe
May decade
May through the years
Monday, May 31, 2010
Sunday, May 30, 2010
Sunday, May 30th
Oh how I love Sundays. They have an awesome Sacrament meeting up here at Primary Children's Hospital every week for those wanting to attend. It's my kind of meeting...it has only been between 30-45 minutes! But the Spirit is super sweet, for all that are in attendance, are kids who have to be here, their families, and a few of their doctors and nurses. Each one with their own story of challenge and heartache. It is really a tender meeting.
The 7th day, the Sabbath was meant to be a day of rest. That's how it has been for Shannon today; no therapies and limited doctors. The opthomologist came in and said her left eye was looking really good but still wanted to have it taped when she is sleeping--which is most of the time! But when the tape is off, she is able to open it about 1/3 of the way and her right eye opens3/4 to all the way.
The very first thing this morning, we had to take a short trip down to xray. She had pulled her feeding tube out of her nose enough that they questioned if she had pulled it out of the intestines and in to the stomach. They don't want it in the stomach for fear of reflux at this point in time. So we took a little ride to xray and found that everything was fine. So we rode around just a little longer in her fancy wheelchair that lets her recline about as much as she could want! Then after the short ride she wanted her bed.
Each time I have gotten her out of bed today to use the restroom, she has been stronger. The last time, although I had my arms around her and steady her, she stood holding all her own weight and took a couple of steps!! I watched that little miracle progress today each time she got up. It was pretty amazing.
Shannon is also "whispering" more. It is more mouthing the words with a very few sounds coming but definitely with the right breathe control, I would say. Some things I can understand but most things I cannot. She is still very groggy even when she is awake. Bless her heart though, she doesn't get frustrated with me when I can't understand what she wants. She is still our sweet Shannon. So we play a lot of 20 questions. :) And the sweetest of all her "whisperings" today was when we had the song "I Need Thee Every Hour" playing...she was mouthing and trying to sing the words with the song!
What a sweet day it has been!
The 7th day, the Sabbath was meant to be a day of rest. That's how it has been for Shannon today; no therapies and limited doctors. The opthomologist came in and said her left eye was looking really good but still wanted to have it taped when she is sleeping--which is most of the time! But when the tape is off, she is able to open it about 1/3 of the way and her right eye opens3/4 to all the way.
The very first thing this morning, we had to take a short trip down to xray. She had pulled her feeding tube out of her nose enough that they questioned if she had pulled it out of the intestines and in to the stomach. They don't want it in the stomach for fear of reflux at this point in time. So we took a little ride to xray and found that everything was fine. So we rode around just a little longer in her fancy wheelchair that lets her recline about as much as she could want! Then after the short ride she wanted her bed.
Each time I have gotten her out of bed today to use the restroom, she has been stronger. The last time, although I had my arms around her and steady her, she stood holding all her own weight and took a couple of steps!! I watched that little miracle progress today each time she got up. It was pretty amazing.
Shannon is also "whispering" more. It is more mouthing the words with a very few sounds coming but definitely with the right breathe control, I would say. Some things I can understand but most things I cannot. She is still very groggy even when she is awake. Bless her heart though, she doesn't get frustrated with me when I can't understand what she wants. She is still our sweet Shannon. So we play a lot of 20 questions. :) And the sweetest of all her "whisperings" today was when we had the song "I Need Thee Every Hour" playing...she was mouthing and trying to sing the words with the song!
What a sweet day it has been!
Saturday, May 29, 2010
Shhh...
Quick note...Shannon is continuing to verbalize more--it's just whispers and barely audible but she is making more of her wants known. She has been expressing to Kate that she is hungry and thirsty, neither of which can we do anything about because she hasn't passed the swallow test to show she won't aspirate. But while I was here with Shannon and Kate, Shan signed drink. Kate asked if she was asking for water and she slightly shook her head. Then Kate got close to her mouth and she said "sprite". Kate explained why she couldn't have any and said the hospital would kick her out if she gave her any. Shan wished, 'don't say' and then put her index finger up to her mouth and said, 'shhh'! What a character!
There are so many sweet stories we could tell but we would never have enough time to write them all. A sweet tender moment a couple days ago was when she motioned Nate closer and then flopped her arms up around his neck to give him a hug. Many of us have gotten hugs since. She is also puckering her lips and kissing us! She didn't use to give that many kisses but I'll certainly take that change!
We do try and answer email, it just takes us a while on some depending on the day. There are so many that are serving our family right now. I don't know for sure who mowed the lawn today but I do know who it was for the past couple of weeks. What a fine young man he is. We are so grateful to him for doing for us something that we can't do right now. One thing I do know, is for the many people who have served us, whether we know about it or not, we know that God will bless them for their kindness. That is much better than a thank you although we try to do that as well.
Happy Sabbath to all.
Pheobe
There are so many sweet stories we could tell but we would never have enough time to write them all. A sweet tender moment a couple days ago was when she motioned Nate closer and then flopped her arms up around his neck to give him a hug. Many of us have gotten hugs since. She is also puckering her lips and kissing us! She didn't use to give that many kisses but I'll certainly take that change!
We do try and answer email, it just takes us a while on some depending on the day. There are so many that are serving our family right now. I don't know for sure who mowed the lawn today but I do know who it was for the past couple of weeks. What a fine young man he is. We are so grateful to him for doing for us something that we can't do right now. One thing I do know, is for the many people who have served us, whether we know about it or not, we know that God will bless them for their kindness. That is much better than a thank you although we try to do that as well.
Happy Sabbath to all.
Pheobe
Saturday Therapy
This is Udell. I thought I would give a quick update on Shannon's therapy sessions today. She did really well. They are trying to build up her endurance with walking further and being able to keep things in control. Imagine what would happen to your muscles if you spent 2 1/2 weeks in bed, let alone having a major injury. So she went further today than yesterday, did the puzzle faster, and did really well at the catching and throwing exercises. She did really well for the speech therapist. They played Tic-Tac-Toe and Shannon was able to verbalize (with sounds!!) that she wanted to be the X. She recognized when she needed to place an X to block, and when she was ready to win. She did other things that were really cool, but maybe the best was when she got back to her room, the nurses helper asked he if she wanted to stay in the chair or get back in bed. She whispered, but audibly said that she wanted to get back in bed. It is amazing to see the small steps that are so significant. It reminds us over and over how grateful we are for the care she is receiving, and especially for the blessings she is receiving on her road to recovery. Aren't the tender mercies of the Lord wonderful!!
Continued..
I have been asked for more details as I said. We are also using this as a journal for Shannon. But there are so many things that happen, it is hard to record them all. And it is difficult to know just how much Shannon would want out there for everyone. Hopefully as she reads this someday and then reads your comments, she will understand.
So we are in the NTU. There Shannon has a private room and it has a couch/bed in it for one person to spend the night. Shannon is no longer in need of intensive care so the nurses come in to do their routines but not to sit and watch monitors and constantly be checking her. However, it is important that someone is always with her. So we work out our schedules so there is only one with her for the most part except when we change shifts. Because she always needs someone, the hospital has orders to give Shannon one on one attention when we leave the room for any reason and at night so we will sleep. I stayed with her the first 2 nights and it works so well. I am in the room so I am with her if she needs family but I can also sleep. Trying to be obedient to those who keep reminding us that we need to take care of ourselves, I have asked for the tech (the person who gives the one on one when we are gone) to be with Shannon from around 10:30 pm and 6:00 am and I go to the bed. Because of the sweet love of our ward, we have a care box that is filled with muffins, fruit, juices, etc and I usually eat from there for breakfast. I leave to go eat lunch and dinner but for me, I stay at the hospital to eat. So all of our needs are being meet. Primary Children's Hospital truly operates with the involvement and comfort of the family being in the best interest of the child. We feel very blessed and fortunate to be in that hospital!!
Its good to talk to people because they tell me what is missing in the blog. I wish it were my medical doctor son telling you some of these things but I will try and tell you what we are learning. This is in VERY simple language because that is how I can understand it! When a person has a traumatic brain injury, the pathways or connections that we establish as we grow from a baby on, are disrupted. Generally speaking, the severity of the injury will determine the number of pathways/connections that die, miracles notwithstanding. The types of pathways that die depend on where the injury occurred. Our brains are the most magnificent organ one can imagine. Part of the process of healing is to rebuild any pathways/connections that is possible to rebuild. Sometimes there is so much damage that it can't be done. Our pathways/connections are built upon one another and hence we see the different development stages in babies as they grow into adults. So Shannon's brain is rebuilding and reconnecting. The need for a firm foundation and not missing any steps is critical and that is why the therapists begin at such an elementary level. It will help the brain in rebuilding the pathways/connections and shoring up the foundation that is still in tact. Shannon is rebuilding her connections--it takes years for babies to build those connections. In TBIs, the brain used to know what to do and so the progression can go much faster but it still takes time. The connections that Shannon's brain still have are remarkable and are part of the miracle considering her injury. It is difficult to share with you some of the things that Shannon is working on if you don't remember this process. Please keep this in mind and we will try and continue to share our journey with you. We do that because it is your faith and prayers that we continue to see the miracles. And somehow we feel that the Lord is using this blog as a means of touching others. We owe Him so much that if in some small way this is part of His purpose, we want very much to obey regardless of how difficult it might be.
Yesterday during physical therapy and occupational therapy, they had Shannon pull colored velcro blocks off a large 30" by 40" (I am guessing) board. They would ask her to get a red block. Then they would wait for a long time in order to give her brain a chance to process. Sometimes they would tap her hand and say it again. Shan is still having problems holding up her head and is not sitting on her own but she grabbed the right block the first time. The second time (they asked for a different color) she picked the wrong one. Then the next couple were correct, then she missed one and then she got ALL the rest of them right. As you think of the brain making new connections maybe even by trial and error, this process makes so much more sense. She still struggles to open that right eye wide enough and she is still training it to look where she wants it to look and up is especially hard at this time. They did have to move the blocks a little lower so she could see them. The second activity they did was kicking a beach ball. She did super well with that and even alternated legs which is critical for the brain to reform those cross patterns necessary for reading. She did that time and she was spent! They helped her walk back to her wheelchair by being behind her, slightly kicking the foot that needed to move to get her started. Of the maybe 10 steps, she probably moved them herself 6 times and it took a good full minute. But it was more than the day before!! They like me to take her for a stroll so she can get stronger by sitting up. We didn't go far. She was just too exhausted.
We had a big misunderstanding with the speech folks. Some how I understood that they were going to give her the swallow test again. The nurse even thought that. We wanted her well rested for that. But when speech came in, we learned that they were not planning another study for probably 2 weeks. That was a tough blow. I had been telling Shannon how important this test would be because then she could start eating and when eating enough, they would take out the tube which she dislikes so much. So instead of the study being done immediately, they were talking two weeks and I am sure it showed the shock and disappointment on my face and my heart breaking for I had told Shan it was the next big step for her. It was an unfortunate turn of events that we needed to adjust to. The speech therapist explained all the things that has to happen in order for a good study and what they had done was mostly for a base line. It was a disappointment but we know that those will come. So we will plan on the two weeks and see if Shannon will let them wait that long. It will depend on how well she does with the speech therapy that they give her. (The therapist did see my face and so she said that perhaps we could try again on Tuesday after the holiday but she was saying that to comfort the disappointment. So we will plan on the 2 weeks and pray for another miracle!) The therapist then worked on Shannon using the muscles in the left side of her face and we saw more movement of the eyebrow and the smile! Such little tiny things but they become victories and progress.
The next activity was to have Shannon write her name. She put 3 marks on 3 different lines and thought she had done it. So the therapist told her that wasn't correct and she then patterned on the paper how to write Shannon. Then she gave the pencil to Shannon and she wrote her name!! It was very small and went at an angle rather than straight across but she did it! And the coolest part was that she moved to cursive and wrote the last 3 letters of her name the way she did before the accident! The therapist said that the angle was because the optic nerve in her eye is still not healed. (We are still keeping the left eye taped--it looks pretty good but we want the opthomologist to give us the go ahead sign before we leave the tape off. )
Then the therapist had Shannon match cards (4X6) that each had 1/2 a picture on it and she was to match the picture together. I think it was 6 halves that she started with. Once she figured out what she was supposed to do, it didn't take but a minute for her to match them. It is very hard for her to move and control her arms and hands just like the rest of her body but she did it! It takes time for each activity and it is again exhausting for Shannon. She was so ready to lay down and go back to sleep!
We now have a list of things (from watching the therapies) of things to work on with Shannon when she is awake! We enjoy interacting with her when she is awake. Her short term memory is still having a hard time. What I told her yesterday, she may not remember today. But it is getting better each day. Long term memory doesn't seem to be affected for as we talk of so many of you, she knows who you are and her interactions with you.
There has been no speech and only a couple of words has she tried to mouth. But Udell reports that last night they heard her make a couple of sounds. It seems that that is the beginning stages of speech returning! Yeh! Another victory.
To us, because of our family situation, each of these steps of progression is miraculous! We know what it is like for development not to progress. It makes us even more grateful to Heavenly Father for each step and being able to see His miraculous powers working on her behalf is very humbling. I know that the men and women in the medical field are amazing and they have learned so many things to help with development but ultimately, they can't MAKE it happen. That my family, friends, neighbors, loved ones, I testify is up to our Father in Heaven. We are so grateful to Him for His many tender mercies. We are grateful to Him for your love and support that helps us to "be strong and of good courage" and to recognize His presence in our lives.
Pheobe
So we are in the NTU. There Shannon has a private room and it has a couch/bed in it for one person to spend the night. Shannon is no longer in need of intensive care so the nurses come in to do their routines but not to sit and watch monitors and constantly be checking her. However, it is important that someone is always with her. So we work out our schedules so there is only one with her for the most part except when we change shifts. Because she always needs someone, the hospital has orders to give Shannon one on one attention when we leave the room for any reason and at night so we will sleep. I stayed with her the first 2 nights and it works so well. I am in the room so I am with her if she needs family but I can also sleep. Trying to be obedient to those who keep reminding us that we need to take care of ourselves, I have asked for the tech (the person who gives the one on one when we are gone) to be with Shannon from around 10:30 pm and 6:00 am and I go to the bed. Because of the sweet love of our ward, we have a care box that is filled with muffins, fruit, juices, etc and I usually eat from there for breakfast. I leave to go eat lunch and dinner but for me, I stay at the hospital to eat. So all of our needs are being meet. Primary Children's Hospital truly operates with the involvement and comfort of the family being in the best interest of the child. We feel very blessed and fortunate to be in that hospital!!
Its good to talk to people because they tell me what is missing in the blog. I wish it were my medical doctor son telling you some of these things but I will try and tell you what we are learning. This is in VERY simple language because that is how I can understand it! When a person has a traumatic brain injury, the pathways or connections that we establish as we grow from a baby on, are disrupted. Generally speaking, the severity of the injury will determine the number of pathways/connections that die, miracles notwithstanding. The types of pathways that die depend on where the injury occurred. Our brains are the most magnificent organ one can imagine. Part of the process of healing is to rebuild any pathways/connections that is possible to rebuild. Sometimes there is so much damage that it can't be done. Our pathways/connections are built upon one another and hence we see the different development stages in babies as they grow into adults. So Shannon's brain is rebuilding and reconnecting. The need for a firm foundation and not missing any steps is critical and that is why the therapists begin at such an elementary level. It will help the brain in rebuilding the pathways/connections and shoring up the foundation that is still in tact. Shannon is rebuilding her connections--it takes years for babies to build those connections. In TBIs, the brain used to know what to do and so the progression can go much faster but it still takes time. The connections that Shannon's brain still have are remarkable and are part of the miracle considering her injury. It is difficult to share with you some of the things that Shannon is working on if you don't remember this process. Please keep this in mind and we will try and continue to share our journey with you. We do that because it is your faith and prayers that we continue to see the miracles. And somehow we feel that the Lord is using this blog as a means of touching others. We owe Him so much that if in some small way this is part of His purpose, we want very much to obey regardless of how difficult it might be.
Yesterday during physical therapy and occupational therapy, they had Shannon pull colored velcro blocks off a large 30" by 40" (I am guessing) board. They would ask her to get a red block. Then they would wait for a long time in order to give her brain a chance to process. Sometimes they would tap her hand and say it again. Shan is still having problems holding up her head and is not sitting on her own but she grabbed the right block the first time. The second time (they asked for a different color) she picked the wrong one. Then the next couple were correct, then she missed one and then she got ALL the rest of them right. As you think of the brain making new connections maybe even by trial and error, this process makes so much more sense. She still struggles to open that right eye wide enough and she is still training it to look where she wants it to look and up is especially hard at this time. They did have to move the blocks a little lower so she could see them. The second activity they did was kicking a beach ball. She did super well with that and even alternated legs which is critical for the brain to reform those cross patterns necessary for reading. She did that time and she was spent! They helped her walk back to her wheelchair by being behind her, slightly kicking the foot that needed to move to get her started. Of the maybe 10 steps, she probably moved them herself 6 times and it took a good full minute. But it was more than the day before!! They like me to take her for a stroll so she can get stronger by sitting up. We didn't go far. She was just too exhausted.
We had a big misunderstanding with the speech folks. Some how I understood that they were going to give her the swallow test again. The nurse even thought that. We wanted her well rested for that. But when speech came in, we learned that they were not planning another study for probably 2 weeks. That was a tough blow. I had been telling Shannon how important this test would be because then she could start eating and when eating enough, they would take out the tube which she dislikes so much. So instead of the study being done immediately, they were talking two weeks and I am sure it showed the shock and disappointment on my face and my heart breaking for I had told Shan it was the next big step for her. It was an unfortunate turn of events that we needed to adjust to. The speech therapist explained all the things that has to happen in order for a good study and what they had done was mostly for a base line. It was a disappointment but we know that those will come. So we will plan on the two weeks and see if Shannon will let them wait that long. It will depend on how well she does with the speech therapy that they give her. (The therapist did see my face and so she said that perhaps we could try again on Tuesday after the holiday but she was saying that to comfort the disappointment. So we will plan on the 2 weeks and pray for another miracle!) The therapist then worked on Shannon using the muscles in the left side of her face and we saw more movement of the eyebrow and the smile! Such little tiny things but they become victories and progress.
The next activity was to have Shannon write her name. She put 3 marks on 3 different lines and thought she had done it. So the therapist told her that wasn't correct and she then patterned on the paper how to write Shannon. Then she gave the pencil to Shannon and she wrote her name!! It was very small and went at an angle rather than straight across but she did it! And the coolest part was that she moved to cursive and wrote the last 3 letters of her name the way she did before the accident! The therapist said that the angle was because the optic nerve in her eye is still not healed. (We are still keeping the left eye taped--it looks pretty good but we want the opthomologist to give us the go ahead sign before we leave the tape off. )
Then the therapist had Shannon match cards (4X6) that each had 1/2 a picture on it and she was to match the picture together. I think it was 6 halves that she started with. Once she figured out what she was supposed to do, it didn't take but a minute for her to match them. It is very hard for her to move and control her arms and hands just like the rest of her body but she did it! It takes time for each activity and it is again exhausting for Shannon. She was so ready to lay down and go back to sleep!
We now have a list of things (from watching the therapies) of things to work on with Shannon when she is awake! We enjoy interacting with her when she is awake. Her short term memory is still having a hard time. What I told her yesterday, she may not remember today. But it is getting better each day. Long term memory doesn't seem to be affected for as we talk of so many of you, she knows who you are and her interactions with you.
There has been no speech and only a couple of words has she tried to mouth. But Udell reports that last night they heard her make a couple of sounds. It seems that that is the beginning stages of speech returning! Yeh! Another victory.
To us, because of our family situation, each of these steps of progression is miraculous! We know what it is like for development not to progress. It makes us even more grateful to Heavenly Father for each step and being able to see His miraculous powers working on her behalf is very humbling. I know that the men and women in the medical field are amazing and they have learned so many things to help with development but ultimately, they can't MAKE it happen. That my family, friends, neighbors, loved ones, I testify is up to our Father in Heaven. We are so grateful to Him for His many tender mercies. We are grateful to Him for your love and support that helps us to "be strong and of good courage" and to recognize His presence in our lives.
Pheobe
Friday, May 28, 2010
Ok, I'll back up...
I have had several people say, "wait a minute, we missed something!" I guess when we are living this 24/7, we assume all is clear to others. Thanks to those who asked for more clarification and to those who are asking for more details. If the miracle we are living, will help the faith of others, we will continue to update the blog. Please know that progress is slow and will be--I will explain in a minute--and there are some things that unless you see it, it's hard to imagine. When I write what has happened and then reread it, I keep thinking, that doesn't really describe what is happening. I wish I was a better writer but if you read with your heart, it won't matter. And if you aren't reading all this with your heart, well, then you probably aren't reading it. So
I will back up and explain a few things. (Please if I don't make something clear and you think it will help you and/or others, please let us know.) So on Day 14, Wednesday, we were under the impression that we would be in the PICU for another 2-3 days. Then before we could hardly breathe, they took Shannon done for another CT scan, it looked good so the doctors removed her EVD tube (the drain), they took out some IVs, did a few other things and it seemed from no where came this blue sticky note to our nurse. She smiled up at us and said, 'you are to be on the floor at 12:15 (about 15 minutes later)'! The floor meant to move from PICU to what I HAD THOUGHT was Rehab. There was no messing around after that! I think we were in such a state of shock and so mentally unprepared that we didn't get to celebrate in the joy of moving on! It was strange the feelings I had as we left. We had come to feel such security in the PICU and the nurse that moved us, we just love and all of a sudden we were gone and put into a new environment. After we had a chance to settle in and figure out the new routine, we realized what a big step Shannon has made and we celebrate and thank Heavenly Father for again, watching over us and allowing the miracle to continue.
So she moved, not to Rehab but to the Neuroscience Trauma Unit (NTU). That is more like a hospital but the rooms are set up for families to stay with the patient. We will remain on the NTU until she is no longer in need of medical treatment. Then she is released to Rehab. However, she doesn't move then, she just changes which doctors are in charge of her. But Rehab isn't going to let a minute waste. They had already been in briefly over at the PICU but now they are getting really serious. Her medical needs will come first and then the Rehab but they work so well together that it seems seamless.
I was asked if Shannon was really awake. The answer is yes and no. She comes awake off and on but she is very groggy still. On Sunday, she will receive her last doses of ativan and methidone. She will then be only on Tylenol for pain. However, any one with a traumatic brain injury (TBI) is going to be sleepy and tired for a long time!! There is a chance that there is still some pentibaritol in her system. And then if you think about laying in a bed for over 2 weeks without eating much of anything, you know it's going to take a long time to get over that. I have to keep reminding myself of all of that when she is just so exhausted after just a little bit of work. So she is not very awake and when she is, it is for short periods of time.
We continue to learn more and more about TBIs. Udell mentioned the big book/manual that they gave to us. But so far, I am learning more from the doctors and therapists that take time to explain things in more detail. For example, we were told that after a TBI, the brain has to relearn most everything. For Shannon to be able to do all she is at this point is another miracle that we didn't even realize. Most TBI's when they first begin to wake up are very agitated and aggressive. Shannon hasn't been. She was annoyed by all the tubes on her and so she was always wanting to pull them off or out! That again is another stage. We have been watching her like hawks to be sure she doesn't pull something out. Well, Wednesday night, I was sitting right next to her, watching her and somehow she got past me and pulled out the feeding tube. I really felt bad because that meant she had to go downstairs to xray to have them put it back in. Since then she has pulled it out a couple more times but we were able to stop her before she got more than an inch out. You have to watch her constantly, for she is always trying something new.
Shannon worked with the speech therapist today. We thought she was going to be able to retake the swallow test today but we were mistaken. It sure made Shannon sad.
I will finish this post tomorrow. It has been a long 2 1/2 weeks and tonight will be my first night back in my own bed!
Pheobe
I will back up and explain a few things. (Please if I don't make something clear and you think it will help you and/or others, please let us know.) So on Day 14, Wednesday, we were under the impression that we would be in the PICU for another 2-3 days. Then before we could hardly breathe, they took Shannon done for another CT scan, it looked good so the doctors removed her EVD tube (the drain), they took out some IVs, did a few other things and it seemed from no where came this blue sticky note to our nurse. She smiled up at us and said, 'you are to be on the floor at 12:15 (about 15 minutes later)'! The floor meant to move from PICU to what I HAD THOUGHT was Rehab. There was no messing around after that! I think we were in such a state of shock and so mentally unprepared that we didn't get to celebrate in the joy of moving on! It was strange the feelings I had as we left. We had come to feel such security in the PICU and the nurse that moved us, we just love and all of a sudden we were gone and put into a new environment. After we had a chance to settle in and figure out the new routine, we realized what a big step Shannon has made and we celebrate and thank Heavenly Father for again, watching over us and allowing the miracle to continue.
So she moved, not to Rehab but to the Neuroscience Trauma Unit (NTU). That is more like a hospital but the rooms are set up for families to stay with the patient. We will remain on the NTU until she is no longer in need of medical treatment. Then she is released to Rehab. However, she doesn't move then, she just changes which doctors are in charge of her. But Rehab isn't going to let a minute waste. They had already been in briefly over at the PICU but now they are getting really serious. Her medical needs will come first and then the Rehab but they work so well together that it seems seamless.
I was asked if Shannon was really awake. The answer is yes and no. She comes awake off and on but she is very groggy still. On Sunday, she will receive her last doses of ativan and methidone. She will then be only on Tylenol for pain. However, any one with a traumatic brain injury (TBI) is going to be sleepy and tired for a long time!! There is a chance that there is still some pentibaritol in her system. And then if you think about laying in a bed for over 2 weeks without eating much of anything, you know it's going to take a long time to get over that. I have to keep reminding myself of all of that when she is just so exhausted after just a little bit of work. So she is not very awake and when she is, it is for short periods of time.
We continue to learn more and more about TBIs. Udell mentioned the big book/manual that they gave to us. But so far, I am learning more from the doctors and therapists that take time to explain things in more detail. For example, we were told that after a TBI, the brain has to relearn most everything. For Shannon to be able to do all she is at this point is another miracle that we didn't even realize. Most TBI's when they first begin to wake up are very agitated and aggressive. Shannon hasn't been. She was annoyed by all the tubes on her and so she was always wanting to pull them off or out! That again is another stage. We have been watching her like hawks to be sure she doesn't pull something out. Well, Wednesday night, I was sitting right next to her, watching her and somehow she got past me and pulled out the feeding tube. I really felt bad because that meant she had to go downstairs to xray to have them put it back in. Since then she has pulled it out a couple more times but we were able to stop her before she got more than an inch out. You have to watch her constantly, for she is always trying something new.
Shannon worked with the speech therapist today. We thought she was going to be able to retake the swallow test today but we were mistaken. It sure made Shannon sad.
I will finish this post tomorrow. It has been a long 2 1/2 weeks and tonight will be my first night back in my own bed!
Pheobe
Thursday, May 27, 2010
Trauma Unit
We are now in the Neuroscience Trauma Unit--not Rehab technically. Although Shannon is doing rehab now, her medical treatment takes presedence and it is the Trauma team of doctors who are "in charge" of her. When she has gotten past all the medical issues, then she is released to the Rehab unit--same place, just different doctors.
One of the main trama doctors who has been following Shannon from the beginning came in to today. He looked at Shannon, shook his head, and said, "Unbelievable!! Unbelievable!!" He was so amazed at her progress. So many doctors and nurses have all said similar things. I don't know if any of them that were there that first night, ever thought that she would live. And now they stop by to see her becuase it makes their day! Miracles do kind of make you feel that way, don't they?
Shannon has had a hard day. We truly are into the really tough part where she has to do all the work. They got her out of bed again today. (Did it get reported that they got her up yesterday afternoon? They walked her across the room and back and she was totally exhausted!) Today they did even more. This time they got her out of bed, put her on this fancy wheelchair and took her to the therapy room. There she worked with occupational therapy; the first step was to help her use her eyes to see puzzle pieces and put them in the puzzle with the matching picture. She was still very tired and medicated enough that she didn't hold her head up much without help. The therapist kept reminding me that the brain is basically relearning some pretty basic stuff and it takes quite a bit of time for it to process. It took her 10-12 minutes or so to do a 9 piece, pegboard puzzle. Then they had her catch a beach ball and throw it back to them 10 times. Her coordination is better than I thought it would be but it has a ways to go. This whole time they had her sitting up, with one therapist behind her and another working with her. Because of the trauma her body has been through, plus having been in bed for 2 weeks without hardly moving a muscle, she is so very very weak and it doesn't take much to wear her out.
Shannon also went to xray for a swallow study. Before they will let her eat anything, the xray has to show her swallowing a spoon full of pudding and having it go down the right way. About an hour before the study, she had been given her meds which always makes her sleepy and being tired already made it just too hard to swallow it straight down. So she didn't pass the test and I think that made her very disappointed. But if she were to eat now, she would aspirate and possible get pneunomia again. We certainly don't want that. So we will try again tomorrow.
I think today we have hit one of those challenges that I think will be one of the hardest if not the hardest, for all of us--her realizing all that she has lost and knowing all the things she can't do and her recognizing the simplicity of the tasks they have her do. She sees that although simple, they are very hard for her to do. She knows what she wants to say and can't make those 22 muscles work that gave her voice to her words in the past. I have seen that saddness in her face today. I talked with her for a long time, giving encouragement and trying to help her understand that with faith all this is temporary. I told her of all the miracles we have already experienced. And then I thought of the blog. I opened to the comment page, the one after we wrote of her first real awake day and I read to her a 1/2 dozen or so of those entries that have come from so many of you. I finally got a small smile from the corner of her mouth. It's hard enough for us to watch but I can't imagine how tough it is for her. We try to remember that wise advise given about looking at progress by the week not by the hour or even the day. We have always said this was going to be a long road back to the miracle of a full recovery. We are reminded that "miraculous doesn't mean instanteous". But faith will endure!
Once again, we thank you for your faith, prayers and support. To say those words seem so insignficant and almost trite when our hearts are so full of gratitude. We just pray that the Lord will bless you for blessing us!
Pheobe
One of the main trama doctors who has been following Shannon from the beginning came in to today. He looked at Shannon, shook his head, and said, "Unbelievable!! Unbelievable!!" He was so amazed at her progress. So many doctors and nurses have all said similar things. I don't know if any of them that were there that first night, ever thought that she would live. And now they stop by to see her becuase it makes their day! Miracles do kind of make you feel that way, don't they?
Shannon has had a hard day. We truly are into the really tough part where she has to do all the work. They got her out of bed again today. (Did it get reported that they got her up yesterday afternoon? They walked her across the room and back and she was totally exhausted!) Today they did even more. This time they got her out of bed, put her on this fancy wheelchair and took her to the therapy room. There she worked with occupational therapy; the first step was to help her use her eyes to see puzzle pieces and put them in the puzzle with the matching picture. She was still very tired and medicated enough that she didn't hold her head up much without help. The therapist kept reminding me that the brain is basically relearning some pretty basic stuff and it takes quite a bit of time for it to process. It took her 10-12 minutes or so to do a 9 piece, pegboard puzzle. Then they had her catch a beach ball and throw it back to them 10 times. Her coordination is better than I thought it would be but it has a ways to go. This whole time they had her sitting up, with one therapist behind her and another working with her. Because of the trauma her body has been through, plus having been in bed for 2 weeks without hardly moving a muscle, she is so very very weak and it doesn't take much to wear her out.
Shannon also went to xray for a swallow study. Before they will let her eat anything, the xray has to show her swallowing a spoon full of pudding and having it go down the right way. About an hour before the study, she had been given her meds which always makes her sleepy and being tired already made it just too hard to swallow it straight down. So she didn't pass the test and I think that made her very disappointed. But if she were to eat now, she would aspirate and possible get pneunomia again. We certainly don't want that. So we will try again tomorrow.
I think today we have hit one of those challenges that I think will be one of the hardest if not the hardest, for all of us--her realizing all that she has lost and knowing all the things she can't do and her recognizing the simplicity of the tasks they have her do. She sees that although simple, they are very hard for her to do. She knows what she wants to say and can't make those 22 muscles work that gave her voice to her words in the past. I have seen that saddness in her face today. I talked with her for a long time, giving encouragement and trying to help her understand that with faith all this is temporary. I told her of all the miracles we have already experienced. And then I thought of the blog. I opened to the comment page, the one after we wrote of her first real awake day and I read to her a 1/2 dozen or so of those entries that have come from so many of you. I finally got a small smile from the corner of her mouth. It's hard enough for us to watch but I can't imagine how tough it is for her. We try to remember that wise advise given about looking at progress by the week not by the hour or even the day. We have always said this was going to be a long road back to the miracle of a full recovery. We are reminded that "miraculous doesn't mean instanteous". But faith will endure!
Once again, we thank you for your faith, prayers and support. To say those words seem so insignficant and almost trite when our hearts are so full of gratitude. We just pray that the Lord will bless you for blessing us!
Pheobe
A Time of Reflection--A Time of Transition
Yesterday as Pheobe and I talked with Shannon’s nurse and reflected on the past two weeks, certain things came into perspective more that underscore what a miraculous thing we have all experienced since Shannon’s accident. We thought we might try to share some of those things with you to express our love and gratitude to Heavenly Father and to you for helping bring these things to pass.
When Shannon first got to Primary Children’s Hospital, the evaluation of her condition was pretty dire. Most of the people involved were concerned about her survival and were doubtful that she would make it through the surgery or through the night. Due to that her treatment was very aggressive. Emergency surgery was performed to stop the bleeding which was occurring on both sides of her head and a very large section of her skull was removed to allow the brain to swell without doing more damage than the original injury had caused. She was placed on heavy sedation medications to minimize her brain function and try to control the swelling and pressures in her brain. When those medications were not as effective as needed, they brought out even more powerful medications. The pentobaritol drug is not used very often—only in the most critical cases. We hadn’t realized it at the time, but the concern that the doctors had in those early hours was that her pressures were not under control, even though the removal of the section of the skull had provided tons of room for swelling to occur. Had the same swelling occurred within the confines of the skull, it would have been fatal. So that critical period over the first weekend when so many of you were fasting and praying for her was even more critical than we had realized at the time. We recognize that the Lord was in charge, inspiring doctors and nurses, strengthening Shannon’s body and mind and blessing us all in so many ways. Again we are so grateful for these marvelous blessings and for the loving care of a Heavenly Father.
Graduating from the Pediatric Intensive Care Unit is a significant milestone. Shannon has received phenomenal critical care during her stay there and we are so grateful to the many medical professionals who have loved and cared for her. We now move to a very different phase of her treatment and recovery—less life-threatening but requiring more effort, determination and faith on our part and on Shannon’s part. The nurse presented us with a thick manual on Traumatic Brain Injury to help us understand the phases and process of recovery. I have not had much of a chance to look at it, but the conversations we have had indicate that the process of healing and recovery vary by individual but have certain common characteristics. For instance, right now Shannon seems obsessed with the tubes and patches that monitor her pulse, respiration, etc. She tries to pull at them and get rid of them. All of this is typical of a phase of recovery. So we have a lot to learn and there is a lot of work to do. It is not like Shannon just wakes up and pops out of bed as if she has overslept. She has to re-learn how to do many things. Her brain has to heal and re-program itself to allow her to do things that were automatic before. She has come a long way in a short time. But she still has a long way to go on her journey to complete recovery. It will require our collective faith, prayers and hard work. And as Aaron just said in a text to me, “the better she gets, the less frequent the progress will show.”
We are glad to be at this phase, but there are lots of adjustments that we are needing to make. We cannot express enough the appreciation we feel for your concern and for your continued faith and prayers.
When Shannon first got to Primary Children’s Hospital, the evaluation of her condition was pretty dire. Most of the people involved were concerned about her survival and were doubtful that she would make it through the surgery or through the night. Due to that her treatment was very aggressive. Emergency surgery was performed to stop the bleeding which was occurring on both sides of her head and a very large section of her skull was removed to allow the brain to swell without doing more damage than the original injury had caused. She was placed on heavy sedation medications to minimize her brain function and try to control the swelling and pressures in her brain. When those medications were not as effective as needed, they brought out even more powerful medications. The pentobaritol drug is not used very often—only in the most critical cases. We hadn’t realized it at the time, but the concern that the doctors had in those early hours was that her pressures were not under control, even though the removal of the section of the skull had provided tons of room for swelling to occur. Had the same swelling occurred within the confines of the skull, it would have been fatal. So that critical period over the first weekend when so many of you were fasting and praying for her was even more critical than we had realized at the time. We recognize that the Lord was in charge, inspiring doctors and nurses, strengthening Shannon’s body and mind and blessing us all in so many ways. Again we are so grateful for these marvelous blessings and for the loving care of a Heavenly Father.
Graduating from the Pediatric Intensive Care Unit is a significant milestone. Shannon has received phenomenal critical care during her stay there and we are so grateful to the many medical professionals who have loved and cared for her. We now move to a very different phase of her treatment and recovery—less life-threatening but requiring more effort, determination and faith on our part and on Shannon’s part. The nurse presented us with a thick manual on Traumatic Brain Injury to help us understand the phases and process of recovery. I have not had much of a chance to look at it, but the conversations we have had indicate that the process of healing and recovery vary by individual but have certain common characteristics. For instance, right now Shannon seems obsessed with the tubes and patches that monitor her pulse, respiration, etc. She tries to pull at them and get rid of them. All of this is typical of a phase of recovery. So we have a lot to learn and there is a lot of work to do. It is not like Shannon just wakes up and pops out of bed as if she has overslept. She has to re-learn how to do many things. Her brain has to heal and re-program itself to allow her to do things that were automatic before. She has come a long way in a short time. But she still has a long way to go on her journey to complete recovery. It will require our collective faith, prayers and hard work. And as Aaron just said in a text to me, “the better she gets, the less frequent the progress will show.”
We are glad to be at this phase, but there are lots of adjustments that we are needing to make. We cannot express enough the appreciation we feel for your concern and for your continued faith and prayers.
Wednesday, May 26, 2010
Shannon has moved
A big milestone. I got up to the hospital shortly before 12pm today, and was greeted with some great news. A piece of paper was given to the nurse within a minute of me getting to Shannon's room. The paper meant that she was leaving the PICU in 15 minutes. It actually took about 45 before she was ready to move. However, she is now in the NTU (Neuroscience Trauma Unit). A very exciting development.
It was cool to see Shannon move a lot more. When I came in the room she had her legs tucked up a bit and she was laying on her side. She looks so much better without her neck collar and the mass of tubes. Her eye swelling has gone down and looks a lot better. She is also down to 3 tubes. She has her feeding tube still in, a PICC line and an IV. The IV line will probably be pulled out later today/tonight.
It is amazing to see the changes since I was here Monday morning. Thanks for all the comments and the support that you have given my family. I have been amazed at the young men in the ward who have come and mowed the lawn, and the neighbors who have helped with the yard work. It is appreciated.
Day 14 -- Progress Continues
We were all thrilled with the events of yesterday and from the comments on the blog, that joy was widespread. Today has been a continuation of good things. Her vitals, pressures and other numbers have stayed stable since she came off of the ventilator. Her responsiveness has been really good, even to the point of sticking out her tongue at the night nurse, Nate, when he made some comment she didn't like.
She went down for another CT Scan this morning to she if she was ready to have her EVD tube removed. This tube has been monitoring and regulating pressure in her brain since the surgery. Things have been stable enough and the results of the CT Scan were favorable enough that the tube will be removed in the next few minutes. They are also about ready to remove the arterial line that has been monitoring her blood pressure and allowing frequent blood draws for blood gases. All this is in preparation for a move out of the PICU (intensive care unit) into the Rehab Unit, which will probably happen later today. The doctors here in the PICU are really pleased with her progress, especially in light of the fact that when she was admitted 2 weeks ago, not many people expected her to survive. Her recovery has been miraculous. We are grateful for the many miracles that have brought Shannon to this point and cannot express to you all how grateful we are for your faith and prayers which have sustained and strengthened us. We'll share more of the days events later.
Tuesday, May 25, 2010
Miracles!! do happen!!
I can't wait any longer!!!! MIRACLES DO HAPPEN!! The Lord is hearing our faith and prayers and those sweet little children who have prayed and fasted need to know we are making HUGE progress.
Miracle 1--The collar is OFF, all clear!
Miracle 2 and 3 --The ventilator is out and the oral gastric tube is out of her mouth. It's all her now and she is doing great!
Miracle 4--She is comprehending and responding to so much that everyone here is amazed.
Let me tell you how she has responded to some of our requests and conversation. She is telling us whether she is in pain or not by a nod or shake of the head that is more obvious than this morning. When we ask her to open her eyes, the right brow goes up and the eye opens 1/4", the left side there is but a slight movement of the brow and nothing of the eye. When we ask her to smile the right side is definitely turned up but there is no movement in the left side. What that means is uncertain at this time. It could be nothing more than the fact that there is still swelling on that side of her face which we do see in the eye. (It still looks pretty bad with the swelling.) Or it might be more of a neurological issue that she will need to work on. Time will tell which miracle we will have there.
Shannon reaches her hand towards us. She pointed her finger towards the doctor as if to say who is she and then she did the "come here" sign with her finger. She responded to the doctors questions, wanted to pull more tubes out until we explain why they were there. Today she says she doesn't remember the accident which may be because of the versaid medication which makes you forget!
But here's the best and I hope that all of her high school teachers will hear about this. They had all looked at Shannon's current status in their classes, we turned in a couple of papers that were in her backpack, and then they "froze" her grade at where she was. For those that know Shannon, you know that it would be straight "A"s. She would look at Powerschool several times a day waiting for an assignment to post or a test grade to be entered. It was so important to HER to get all "A"s. She had been working so hard because SHE wanted to say that she had a 4.0 for the year. I can't thank the teachers and administration enough for excusing her from the last 2 weeks of school and giving her the grade she had earned. SO another miracle from Shannon because of her awesome teachers...(this is supposed to be the great build up because this is incredible and makes me cry). We told her what had taken place with her grades and that she had a 4.0! She lifted her hand in to the "OK" sign and smiled. Then with her other hand she showed 4 fingers and then an O. It was just so joyful for us to see that reaction. Everyone here is just so surprised and pleased.
That took a lot out of her and she is sleeping now. They are slowly taking her off the medications--it will take a couple of days and they will go according to how she responds. We plan to be able to post more miracles each day as she wakes up more and shows us what she can do and where we need to work.
Please continue your faith and prayers for Shannon but today add a word of thanks to our Father in Heaven for allowing us to see these miracles happen. We are ever so grateful to the One that has made this possible because of your faith! We feel certain that the Lord will continue to hear our pleas for a full recovery.
Pheobe
Miracle 1--The collar is OFF, all clear!
Miracle 2 and 3 --The ventilator is out and the oral gastric tube is out of her mouth. It's all her now and she is doing great!
Miracle 4--She is comprehending and responding to so much that everyone here is amazed.
Let me tell you how she has responded to some of our requests and conversation. She is telling us whether she is in pain or not by a nod or shake of the head that is more obvious than this morning. When we ask her to open her eyes, the right brow goes up and the eye opens 1/4", the left side there is but a slight movement of the brow and nothing of the eye. When we ask her to smile the right side is definitely turned up but there is no movement in the left side. What that means is uncertain at this time. It could be nothing more than the fact that there is still swelling on that side of her face which we do see in the eye. (It still looks pretty bad with the swelling.) Or it might be more of a neurological issue that she will need to work on. Time will tell which miracle we will have there.
Shannon reaches her hand towards us. She pointed her finger towards the doctor as if to say who is she and then she did the "come here" sign with her finger. She responded to the doctors questions, wanted to pull more tubes out until we explain why they were there. Today she says she doesn't remember the accident which may be because of the versaid medication which makes you forget!
But here's the best and I hope that all of her high school teachers will hear about this. They had all looked at Shannon's current status in their classes, we turned in a couple of papers that were in her backpack, and then they "froze" her grade at where she was. For those that know Shannon, you know that it would be straight "A"s. She would look at Powerschool several times a day waiting for an assignment to post or a test grade to be entered. It was so important to HER to get all "A"s. She had been working so hard because SHE wanted to say that she had a 4.0 for the year. I can't thank the teachers and administration enough for excusing her from the last 2 weeks of school and giving her the grade she had earned. SO another miracle from Shannon because of her awesome teachers...(this is supposed to be the great build up because this is incredible and makes me cry). We told her what had taken place with her grades and that she had a 4.0! She lifted her hand in to the "OK" sign and smiled. Then with her other hand she showed 4 fingers and then an O. It was just so joyful for us to see that reaction. Everyone here is just so surprised and pleased.
That took a lot out of her and she is sleeping now. They are slowly taking her off the medications--it will take a couple of days and they will go according to how she responds. We plan to be able to post more miracles each day as she wakes up more and shows us what she can do and where we need to work.
Please continue your faith and prayers for Shannon but today add a word of thanks to our Father in Heaven for allowing us to see these miracles happen. We are ever so grateful to the One that has made this possible because of your faith! We feel certain that the Lord will continue to hear our pleas for a full recovery.
Pheobe
2nd Ventilator day!
Oh, this great staff in the PICU. They have been very tolerant and put up with these parents who have insatiable questions and with me with my mother bear over protection responses. I think this place should be called the PPICU--Pediatric Patience Intensive Care Unit.
It has been another very good night. Yesterday was such a great day with all of Shannon's responses. Although her nodding and shaking of the head is ever so slight it is obvious when she is saying yes and no. She is generally responsive but still mostly sleeps, sometimes she wakes to us talking to her and sometimes not but that is all very typical.
During the night, they have given her two spontaneous breathing tests. This is the test to see how well she is breathing on her own without any support from the ventilator. She passed both tests very well. So the plan today is to get the tubes out of her mouth and get her neck cleared so we can take the collar off. Then they will cut down her medications a lot, in fact I think they will take the one drug off completely so she will wake up even more. That will be an exciting time but also a scary time--reality is around the corner. But with the kind of responses we are getting, my faith has again been strengthened. I am very optimist. I still believe it may well be a long road but I am ok with that.
When asked, Shannon indicated to one nurse that she remembered the accident and to another that she didn't. Obviously there is confusion going on but hopefully, for the most part she won't remember any of the hospital ordeal. Being in the hospital is never a fun experience.
Today our prayers will be directed to the clearing of the neck and the success for getting rid of the ventilator. Will keep you posted... Pheobe
It has been another very good night. Yesterday was such a great day with all of Shannon's responses. Although her nodding and shaking of the head is ever so slight it is obvious when she is saying yes and no. She is generally responsive but still mostly sleeps, sometimes she wakes to us talking to her and sometimes not but that is all very typical.
During the night, they have given her two spontaneous breathing tests. This is the test to see how well she is breathing on her own without any support from the ventilator. She passed both tests very well. So the plan today is to get the tubes out of her mouth and get her neck cleared so we can take the collar off. Then they will cut down her medications a lot, in fact I think they will take the one drug off completely so she will wake up even more. That will be an exciting time but also a scary time--reality is around the corner. But with the kind of responses we are getting, my faith has again been strengthened. I am very optimist. I still believe it may well be a long road but I am ok with that.
When asked, Shannon indicated to one nurse that she remembered the accident and to another that she didn't. Obviously there is confusion going on but hopefully, for the most part she won't remember any of the hospital ordeal. Being in the hospital is never a fun experience.
Today our prayers will be directed to the clearing of the neck and the success for getting rid of the ventilator. Will keep you posted... Pheobe
Monday, May 24, 2010
Monday Afternoon
Pheobe thought it would be good for me to post a quick note to record what has been going on today. Shannon has been a lot more responsive, moving around a lot more, stretching her arms and legs and trying to get more comfortable. It is cute to walk into the room and see her lying there with her legs crossed. I can't imagine how uncomfortable if must be to lie in the same basic position for days and days. What is really cool is that she has been communicating more with nodding or shaking her head in response to questions. Jaime, her nurse, would ask her if she was hurting and she would shake her head "No." Then she would ask Shannon if she wanted to lie on her back and she would nod "Yes." There have been lots of things that she has provided those kinds of responses to today. She doesn't like some of the tubes and things that are bugging her and she keeps trying to sneak her way towards them and scratch or pull on them.
I think the increased responsiveness is a combination of her continued progress and the fact that they are reducing the frequency of her medications. It it fun to see her respond, even if it is because she is irritated by tubes and things.
Early Monday Morning
I stayed in Shannon's room last night and let my Mother get some sleep without being bothered. I was surprised that I didn't see her until 6:30 this morning. She was able to get some good sleep. So I get to give the update this morning.
Shannon had a good night last night. Shannon has slept well and gotten a good amount of rest and it seems to have helped. She had hI say that while her eyes are still shut but they do look noticeably better. During the night, they have slightly reduced some of the sedatives that she is on. They have also turned down the rate of her ventilator causing her to do more work breathing by herself.
I wanted to also express thanks to all those who are praying for our family and for Shannon. I was humbled to hear how Shannon's ward has united together to pray for her. I was touched by story after story that was related to me from various people. I am in awe at some of the few stories that my Mother and Father have told me that they have received. I know that they are buoyed up by the spirit that accompanies those stories. In priesthood meeting yesterday, one of the things that Brother Bates said was that the question we should ask when situations like this arise is not "why" but "what can I learn". You may remember that I mentioned this in my first post to this blog. I want to relate just a little that I have learned during this time. I have learned what a powerful influence people can be when they are united together. As people align their purposes together, a power and excitement begin to grow. It becomes contagious and other people join in. It can be used for good or bad. I wonder if I sometimes don't use my influence as well as I can to help unite and strengthen the Lords causes. I know that the Lord gives us countless opportunities to help build his kingdom on this earth. Thank you for all of you that have chosen to give your influence to help my Sister and my family. Your love and prayers are felt and uplift us.
Sunday, May 23, 2010
How many Staples?!
This is Kate. When I got here today Shannon was very responsive to me. I got to have some alone time with her. Shan held my hand and every once in a while as I would say something she would raise her eyebrow trying to open her eyes at me. I saw her eyes follow me a few times if I moved. She also nodded yes when I asked her if she wanted me to put lotion on her feet. She also smiles at times which is cute too. She has reached for my hand a few times when she notices I am not holding it. This all could be just her wanting to move around and get up, but it is comforting for me to see her respond to me so well. When she is "awake" she wants to move and is really enjoying exercising her legs. She is bummed out that the tube is back in her mouth and she still has the brace around her neck. It is cute to see her almost beg for me to take it off when no one is looking!! No worries though, I told her she has to keep them in for a few more days. After Shanny and I had some time together, she was very worn out and went back to sleep. She has tried to open her eyes a few times and reached for a hand to hold, both mom's and mine, as they continue suctioning and other stuff she is not too fond of.
So on to what the post is meant to be about. Shannon got the staples out of her head today!! When the nurse was talking about it, Shan actually grabbed my hand and gave it a squeeze. I asked her if she was scared and looked at me as if to say yes. The nurse reassured me and Shannon that it would not hurt. A little while later one of the Doctors came in to take out the staples. I decided to record some video so if Shan choices to watch it, I have it documented, of course. Shan was tough and did not feel too much. In fact they did some suctioning while they took out some staples and Shan was more annoyed with that. Anyway we finally have a number of how many staples were in her head. She had 68!! WOW!!
Right now Shan is resting. The opthomologist is going to come to look at Shan's eye, it has swollen up a little more as today has progressed. They don't seem too worried about it but the Doctor will be here soon just to make sure. Shannon's pupils have been responsive and doing good. Also other great news is her ICP has been WAY down today!! It has been anywhere from a 0-3 all day. It is amazing to both Mom and me to see those numbers so low!! We keep thinking that maybe something is wrong, but the numbers are good and Shan is doing great!!
I too have been amazed at the love and prayers that have come our way. It is amazing that Shannon has touched so many people's lives. Made me think of how many people I come in contact with and what kind of an example I am. I know, in comparison to my Sister Shannon I am not anywhere near what she is, but I have become more aware of how I treat people and trying to be more positive to those around me. Shan is my Rock and Always has been. She is such a great example and I look up to her in so many ways. I have gotten the time to think of all the ways I look up to her and am amazed and what she does for me. It does not surprise me at all that she has so many people pulling for her and praying for her. I, as her older sister, look up to her and I know that many others do as well.
On behalf of my family, thank you again for the thoughts, prayers and concerns for Shan and the family. We are also blessed to have all of you as a part of our lives and know that the prayers go both ways. Thank you so much for your love and support! Love you all!!
Kate
So on to what the post is meant to be about. Shannon got the staples out of her head today!! When the nurse was talking about it, Shan actually grabbed my hand and gave it a squeeze. I asked her if she was scared and looked at me as if to say yes. The nurse reassured me and Shannon that it would not hurt. A little while later one of the Doctors came in to take out the staples. I decided to record some video so if Shan choices to watch it, I have it documented, of course. Shan was tough and did not feel too much. In fact they did some suctioning while they took out some staples and Shan was more annoyed with that. Anyway we finally have a number of how many staples were in her head. She had 68!! WOW!!
Right now Shan is resting. The opthomologist is going to come to look at Shan's eye, it has swollen up a little more as today has progressed. They don't seem too worried about it but the Doctor will be here soon just to make sure. Shannon's pupils have been responsive and doing good. Also other great news is her ICP has been WAY down today!! It has been anywhere from a 0-3 all day. It is amazing to both Mom and me to see those numbers so low!! We keep thinking that maybe something is wrong, but the numbers are good and Shan is doing great!!
I too have been amazed at the love and prayers that have come our way. It is amazing that Shannon has touched so many people's lives. Made me think of how many people I come in contact with and what kind of an example I am. I know, in comparison to my Sister Shannon I am not anywhere near what she is, but I have become more aware of how I treat people and trying to be more positive to those around me. Shan is my Rock and Always has been. She is such a great example and I look up to her in so many ways. I have gotten the time to think of all the ways I look up to her and am amazed and what she does for me. It does not surprise me at all that she has so many people pulling for her and praying for her. I, as her older sister, look up to her and I know that many others do as well.
On behalf of my family, thank you again for the thoughts, prayers and concerns for Shan and the family. We are also blessed to have all of you as a part of our lives and know that the prayers go both ways. Thank you so much for your love and support! Love you all!!
Kate
2nd Sunday in picu
I sent Udell home last night to hopefully get a full night's sleep and be able to go fulfill his commitment to the Lord as a BYU Bishop. He really didn't want to go and leave Shannon and me but I can be pretty persistent. Hopefully he slept well. But sadly, he wasn't able to proof my posting last night nor this one this morning. I hope I am accurate enough with the details.
I have Shannon's status to report on but then I am going to add a cool experience that has happened to me again. I will post Shanny's first so if you aren't interested in the rest, that is fine.
So I came in this morning and couldn't really see any change. But when I returned (they kick us out for an hour for shift change or maybe it's for us, to get us out of the room occasionally--in any case it is good for us.) When I returned the neurosurgeons were finishing up evaluating her for the morning rounds. The first thing I overheard was "she has really good spontaneous movement". This particular doctor hasn't always been the most positive so it was great to hear that comment. He felt like she was looking very good from his standpoint.
When the other doctors came around, they all felt good about her current status. Her ICPs are clear down to 1-2, which is awesome! Her CPP is 74-84 which is really good. She does have a temperature and so they have cultured everything you can imagine and there is nothing new that they weren't away of. Her pneumonia is clearing up very well and she isn't coughing as much although that would do her good. So overall it was a good report with the ending being....wait. But we are good with that. The next step really is to get her back to the point to take the ventilator off and we really want her strong when they do that again. She's a tiny bit responsive. I'm sad cause she will lift her arms up and they can only go about 8 inches because they are restrainted. When she feels the restraint reach its maximum, her arm just flops back down--either out of frustration or exhaustion. In any case, the plan for today is for quiet rest which is a great thing for Sunday. We may not have anything else to post today, but that's good news. :)
We know that the blog is going to be our history of all of this. So we often put in personal feelings...especially me being the only female of the people who post. I hope that they aren't too personal.
This morning when I first came in, it was one of those times that I felt a little discouraged. This whole experience for me and with so many of you, has become a very spiritual experience. So I kept reminding myself of that. But when I returned to the little room I had slept in last night, I just poured out my heart to our Father in Heaven, asking again for support and strength. Then I returned to Shan's room-I had been gone about an hour. And that is when I heard the neurosurgeion making his positive remark and then I met with the team doing rounds and they too were just so positive about Shannon's current condition. And then to add to that, Shannon slightly raised her eyebrow once to greet me. Everything turned around again and I felt that peace again that can come only from the Lord. Another sweet tender mercy. There have been so many tender mercies. Many of you have commented on our strength of our faith. We don't feel that strong but we do know that it is the Lord who is carrying us through. How grateful we are for Him and all He has done for each of us. Pheobe
I have Shannon's status to report on but then I am going to add a cool experience that has happened to me again. I will post Shanny's first so if you aren't interested in the rest, that is fine.
So I came in this morning and couldn't really see any change. But when I returned (they kick us out for an hour for shift change or maybe it's for us, to get us out of the room occasionally--in any case it is good for us.) When I returned the neurosurgeons were finishing up evaluating her for the morning rounds. The first thing I overheard was "she has really good spontaneous movement". This particular doctor hasn't always been the most positive so it was great to hear that comment. He felt like she was looking very good from his standpoint.
When the other doctors came around, they all felt good about her current status. Her ICPs are clear down to 1-2, which is awesome! Her CPP is 74-84 which is really good. She does have a temperature and so they have cultured everything you can imagine and there is nothing new that they weren't away of. Her pneumonia is clearing up very well and she isn't coughing as much although that would do her good. So overall it was a good report with the ending being....wait. But we are good with that. The next step really is to get her back to the point to take the ventilator off and we really want her strong when they do that again. She's a tiny bit responsive. I'm sad cause she will lift her arms up and they can only go about 8 inches because they are restrainted. When she feels the restraint reach its maximum, her arm just flops back down--either out of frustration or exhaustion. In any case, the plan for today is for quiet rest which is a great thing for Sunday. We may not have anything else to post today, but that's good news. :)
We know that the blog is going to be our history of all of this. So we often put in personal feelings...especially me being the only female of the people who post. I hope that they aren't too personal.
This morning when I first came in, it was one of those times that I felt a little discouraged. This whole experience for me and with so many of you, has become a very spiritual experience. So I kept reminding myself of that. But when I returned to the little room I had slept in last night, I just poured out my heart to our Father in Heaven, asking again for support and strength. Then I returned to Shan's room-I had been gone about an hour. And that is when I heard the neurosurgeion making his positive remark and then I met with the team doing rounds and they too were just so positive about Shannon's current condition. And then to add to that, Shannon slightly raised her eyebrow once to greet me. Everything turned around again and I felt that peace again that can come only from the Lord. Another sweet tender mercy. There have been so many tender mercies. Many of you have commented on our strength of our faith. We don't feel that strong but we do know that it is the Lord who is carrying us through. How grateful we are for Him and all He has done for each of us. Pheobe
God's instruments and unknown prognosis
Shannon is resting peacefully at the moment so I thought I would update the blog again and also answer a couple questions, albeit not fun.
We've been asked what the prognosis' is for Shannon. The answer is, we don't know.
She is still fighting just for life although it is better than when she first came in the hospital. As far as responsiveness, this set back with the ventilator puts us back to where she was 3 or 4 days ago. She isn't responding much to commands but she is raising her arms occasionally. She is just very sedated.
The ventilator had come out yesterday but, you see from the last post, that it had to be reinserted. She is now heavily sedated for probably 3 reasons; one, to keep her comfortable, two, because of the ventilator and three, to help with the withdrawal symptoms of the first set of heavy duty drugs. It is definitely a process in bringing her off some of the medications. But they did their job by keeping the pressure from the swelling down where the doctors felt it had to be.
Shannon's pressures are doing well now, they are not as much of an issue as before. They are staying around the 14-15 level and critical level is above 30. We believe that everything has stopped swelling but it takes a very long time for the swelling in a brain injury to go down. (Right now for the medical people the CPP is at 74.) They have her on several different but still very strong sedative medications and the juggling act is to keep enough on board to keep her asleep but not so much that it makes the heart rate/blood pressure go out of whack. They need her to sleep so she can heal, tolerate the ventilator tubes down her throat, gain some strength and hopefully get rid of more of the withdrawal symptoms.
When she is well enough, they will take out the ventilator again and begin to take her off the sedative drugs. As she wakes up from that, we will again be looking for those milestones of following commands, squeezing our hands, wiggling her toes, etc. But it will be a while after that before she is really awake. We expect that we will be in picu (Primarys Intensive Care Unit) for 3-7 days IF all goes well. After that we are looking at 4-6 weeks in the Rehab unit here at the hospital.
So now for the harder stuff...they continually check her responses because they want to know how much brain damage there is. We have had everything from one doctor telling us she may never wake up or if she does she will be a vegetable to another doctor who feels there is a very good chance of a full recovery. There really could be anything in between those two extremes. All the doctors and nurses try not to give us false hope and to prepare us for the worst. We know that is there job, we understand that.
HOWEVER, so long as I am feeling the strength of your prayers and faith, I reflect upon the priesthood blessings that she has been given and remember that with all the medical field knows and can do, they are not the ones in control. They are instruments in God's hands to bring about his work and his glory, following his plan. Those that know our family well, know that our prayers have not always been answered in the ways we would have liked. But down each of those roads we have learned that it is all part of God's plan. It hasn't been easy, but in the eternal scheme of things, it has been what we needed and worth it.
I am so grateful for priesthood blessings. I am so grateful for the many others who have shared with us their personal witness of our outcome, that unknown to them, has been stated in the priesthood blessings. I am so grateful for those who continue to pray with faith, believing in miracles. We have seen so many little ones along the way. We are also very grateful for the men and women who have spent so much time in education and training to be in the medical field. They are amazing. They are instruments in God's hands everyday and most probably don't even know it.
With this ventilator set back, I have reflected much on the little miracle in my life when my friend sent me the phrase, "miraculous doesn't mean instantously". It has kept my faith and hope high. Please continue your prayers, fasting and faith for our sweet Shanny!
Pheobe
We've been asked what the prognosis' is for Shannon. The answer is, we don't know.
She is still fighting just for life although it is better than when she first came in the hospital. As far as responsiveness, this set back with the ventilator puts us back to where she was 3 or 4 days ago. She isn't responding much to commands but she is raising her arms occasionally. She is just very sedated.
The ventilator had come out yesterday but, you see from the last post, that it had to be reinserted. She is now heavily sedated for probably 3 reasons; one, to keep her comfortable, two, because of the ventilator and three, to help with the withdrawal symptoms of the first set of heavy duty drugs. It is definitely a process in bringing her off some of the medications. But they did their job by keeping the pressure from the swelling down where the doctors felt it had to be.
Shannon's pressures are doing well now, they are not as much of an issue as before. They are staying around the 14-15 level and critical level is above 30. We believe that everything has stopped swelling but it takes a very long time for the swelling in a brain injury to go down. (Right now for the medical people the CPP is at 74.) They have her on several different but still very strong sedative medications and the juggling act is to keep enough on board to keep her asleep but not so much that it makes the heart rate/blood pressure go out of whack. They need her to sleep so she can heal, tolerate the ventilator tubes down her throat, gain some strength and hopefully get rid of more of the withdrawal symptoms.
When she is well enough, they will take out the ventilator again and begin to take her off the sedative drugs. As she wakes up from that, we will again be looking for those milestones of following commands, squeezing our hands, wiggling her toes, etc. But it will be a while after that before she is really awake. We expect that we will be in picu (Primarys Intensive Care Unit) for 3-7 days IF all goes well. After that we are looking at 4-6 weeks in the Rehab unit here at the hospital.
So now for the harder stuff...they continually check her responses because they want to know how much brain damage there is. We have had everything from one doctor telling us she may never wake up or if she does she will be a vegetable to another doctor who feels there is a very good chance of a full recovery. There really could be anything in between those two extremes. All the doctors and nurses try not to give us false hope and to prepare us for the worst. We know that is there job, we understand that.
HOWEVER, so long as I am feeling the strength of your prayers and faith, I reflect upon the priesthood blessings that she has been given and remember that with all the medical field knows and can do, they are not the ones in control. They are instruments in God's hands to bring about his work and his glory, following his plan. Those that know our family well, know that our prayers have not always been answered in the ways we would have liked. But down each of those roads we have learned that it is all part of God's plan. It hasn't been easy, but in the eternal scheme of things, it has been what we needed and worth it.
I am so grateful for priesthood blessings. I am so grateful for the many others who have shared with us their personal witness of our outcome, that unknown to them, has been stated in the priesthood blessings. I am so grateful for those who continue to pray with faith, believing in miracles. We have seen so many little ones along the way. We are also very grateful for the men and women who have spent so much time in education and training to be in the medical field. They are amazing. They are instruments in God's hands everyday and most probably don't even know it.
With this ventilator set back, I have reflected much on the little miracle in my life when my friend sent me the phrase, "miraculous doesn't mean instantously". It has kept my faith and hope high. Please continue your prayers, fasting and faith for our sweet Shanny!
Pheobe
Saturday, May 22, 2010
2 steps forward, 1 step back
"Miraculous doesn't mean instantaneous." I read the talk from Elder Uchtdorf title "Patience" from this last Ensign. It seemed like each line was written for me. It was good that I read it this morning as it gives more meaning to the later events in the day.
Our last post said she hadn't done well last night, but even so, they felt like she was stable and there wasn't anything surprising to them. They continued to work through those issues, trying different medications and the likes. But Shannon continued to work really hard with her breathing. They were doing some suctioning because she wasn't getting rid of her secretions and some how Shannon got a nose bleed that they couldn't immediately stop. By the time they had dealt with the major nose bleed and the suctioning, it was obvious that they would have to intubate her again. (Put her back on the ventilator.) They have to sedate her for that and now they will keep her sedated more until they feel like they can try again to take the tubes out. It was very disappointing but the brighter side is that it has brought down her heart rate and her blood pressure. During all this her right lung collapsed as well. The respiratory therapist worked with her for a long time and they feel like the upper half of the lung is now open. But there is a ways to go. She is getting a higher level of oxygen to support her breathing which will be monitored closely over the next several hours.
Maybe this new set back was to try the patience that I just learned about this morning.... Pheobe
Our last post said she hadn't done well last night, but even so, they felt like she was stable and there wasn't anything surprising to them. They continued to work through those issues, trying different medications and the likes. But Shannon continued to work really hard with her breathing. They were doing some suctioning because she wasn't getting rid of her secretions and some how Shannon got a nose bleed that they couldn't immediately stop. By the time they had dealt with the major nose bleed and the suctioning, it was obvious that they would have to intubate her again. (Put her back on the ventilator.) They have to sedate her for that and now they will keep her sedated more until they feel like they can try again to take the tubes out. It was very disappointing but the brighter side is that it has brought down her heart rate and her blood pressure. During all this her right lung collapsed as well. The respiratory therapist worked with her for a long time and they feel like the upper half of the lung is now open. But there is a ways to go. She is getting a higher level of oxygen to support her breathing which will be monitored closely over the next several hours.
Maybe this new set back was to try the patience that I just learned about this morning.... Pheobe
Saturday Morning
Just a quick update this morning. Shannon had a rough night. The doctors feel that she is adjusting to all of the changes that she has experienced during the past couple days--getting used to breathing on her own, getting the medications out of her system, reacting to new medications, etc. Her temperature, blood pressure and heart rate have been elevated and she has been exhausted given everything that went on yesterday. She is supposed to go for a radiology exam today to see if we can get the cervical collar removed. That is about it for now.
Friday, May 21, 2010
Major Milestones
The end of the day was well worth the wait!! Shannon made it back from the CT scan a little before 4pm. Shortly after, the neurosurgeon resident came and took Aaron and me (Udell) through the results of the MRI and CT scans that had been done earlier in the day. He was pleased that the scans did not show anything unexpected. Perhaps the main thing they wanted to see from the scans was whether or not Shannon had suffered serious vascular injuries that would be manifested in things like strokes or other large area brain injury. The scans did not show anything like that. Consistent with the force of the injury, there is evidence of DAI (diffuse axonal injury) like what would happen with a severe concussion except they take longer to heal than a bruise from a concussion. We don't know what kinds of challenges may result from that--only time will tell. But Shannon is a fighter and with your continued faith and prayers she can tackle them.
While the neurosurgeon was giving us the update on the scans, the rest of the team came to remove the breathing tube. So the breathing tube is out!! She is off all the sedation meds that she has been on for the past 9 days. They will be shifting to some other medications as they watch her adjust to the significant changes that have occurred today. Somewhere in the middle of all of the travel and exams, she was examined by an ophthalmologist. Her left eye has been really swollen and we wanted to make sure that there was nothing else that needed to be done. He indicated that it is swelling of the tissues around her eye resulting from the original injury, and that the swelling should diminish over the next several days.
So the summary version is that Shannon accomplished many milestones today, and she is tired. It has been a very eventful and busy day for her. Although she is waking up, that is not to say that she is alert and talking and all of that. She is responsive to us some of the time, but still has a long way to go to overcome the injuries and the trauma she has gone through, not to mention the treatments of the past many days. There are more milestones in store for tomorrow as they do some additional testing to determine if we can lose the cervical collar, which I think she will really enjoy. She deserves a restful night. As always, we appreciate more than you can know your support, faith and prayers.
Mid Afternoon Update
Much of today has been a continuation of the waiting game. Early this morning they changed the ventilator to a spontaneous breathing mode to give Shannon a test. You know how much Shannon likes tests and how well she does on them. Well this one was no exception--she passed with flying colors. They wanted to see how she would do for an hour. Since she was breathing on her own, they essentially left the machine in CPAP mode to support her if there was an issue. She stayed like that until they sent her down to MRI at about 10. They switched medication to a sedative called Propofol to keep her under for the MRI. That test lasted longer than expected and the Neurosurgery team wanted one other CT scan run after that. So Shannon has been on a couple field trips today and has done fairly well. She is resting as we wait on test results and allow the doctors to determine if they are ready to remove the breathing tube today.
Again, thank you all for your continued faith and prayers.
Here we go...
So it's 6:30 am and she is taking her breathing test. I think she is going to get an A, they have had her breathing on her own for nearly 40 minutes! The ventilator is obviously still connected and all but she is doing the work on her own and doing well. She has to do this for an hour to pass the test. They may put the ventilator back on afterwards because of all the other activities that will be happening but by passing this test, she is another step closer to getting the yukky tubes out of her mouth!
MRI is scheduled for 10:00 am and will take at least 2 hours.
MRI is scheduled for 10:00 am and will take at least 2 hours.
Thursday, May 20, 2010
End of day 8
It's hard to believe all the things that we have been through in just 8 days. But looking back over the week, we have seen many miracles on her behalf. How grateful we are!
Today has been a very good day. Tonight Shannon would move her eyes from side to side looking at her dad and then back at Kate. She gave a thumbs up with both hands. She wiggled her toes! She would squeeze hands when asked. Her eyebrows went up when they asked her to raise them!
Dad asked Shannon if she wanted him to rub her feet and to give him a thumbs up if she did. He got the thumbs up! After rubbing her feet for a while, he was standing by her and lightly rubbing her arm and she pulled away! I guess it was tickling her. At one point she seemed to be pushing at the blanket so he asked her to give a thumbs up if she wanted the blanket off and there was the thumbs up.
It seems like these are all such simple things but for her at this point they are milestones. Aaron told us this evening that she has met all the neurological tests that can be done while she is still under the amount of medication that she is. But wow! Think of all the miracles we have seen already! We feel so blessed.
Tomorrow will be a very big day for her (if everything goes as planned). She will have a breathing test to see if she can maintain her oxygen and then have her MRI. She will come off the drugs she has been on so she can wake up completely. (She will get a different kind of pain medication that won't make her so sleepy.) It will be a scary day for her as she begins to understand where she is at. We know that you are all praying for her and we are so grateful. Will you add a little extra one for her for tomorrow? We are so grateful that prayers are answered. Pheobe
Today has been a very good day. Tonight Shannon would move her eyes from side to side looking at her dad and then back at Kate. She gave a thumbs up with both hands. She wiggled her toes! She would squeeze hands when asked. Her eyebrows went up when they asked her to raise them!
Dad asked Shannon if she wanted him to rub her feet and to give him a thumbs up if she did. He got the thumbs up! After rubbing her feet for a while, he was standing by her and lightly rubbing her arm and she pulled away! I guess it was tickling her. At one point she seemed to be pushing at the blanket so he asked her to give a thumbs up if she wanted the blanket off and there was the thumbs up.
It seems like these are all such simple things but for her at this point they are milestones. Aaron told us this evening that she has met all the neurological tests that can be done while she is still under the amount of medication that she is. But wow! Think of all the miracles we have seen already! We feel so blessed.
Tomorrow will be a very big day for her (if everything goes as planned). She will have a breathing test to see if she can maintain her oxygen and then have her MRI. She will come off the drugs she has been on so she can wake up completely. (She will get a different kind of pain medication that won't make her so sleepy.) It will be a scary day for her as she begins to understand where she is at. We know that you are all praying for her and we are so grateful. Will you add a little extra one for her for tomorrow? We are so grateful that prayers are answered. Pheobe
Readers
It is amazing how many people are reading the blog and how often they are checking it. It's pretty mind boggling. There are many hours that go by with not much to report or things we could report but Shannon wouldn't want us to :) and you would most likely tire of the monotony .
Hey, Shannon's hair is growing!! :) Pheobe
Hey, Shannon's hair is growing!! :) Pheobe
And on we march...steady as you go!
Today has been such a sweet day. We are all still so filled with elation and gratitude from yesterday. Shannon has done very well today but has slept a lot, much quieter. Her feeds (feeding tube) have been increased for more nutrition and by tomorrow should be up to normal for her weight. Her ventilator has been turned down again and she is breathing more and more on her own. Her pneunomia is slowly clearing up and she hasn't been coughing as much but they haven't been suctioning her as much either. She has had a slight tempature and they continue to give her tylenol for that.
Shannon has squeezed my hand numerous times including on demand today. She frequently raises her hands as far as the restraints will let her go. I saw her once bring her hands together and started scratching at the sat probe (measures her oxygen levels). I quickly pulled her hand away and explained what it was. She seemed to relax after that. Most all of her movements are meaningful. She raises her eyebrows in the attempt to open her eyes but they still are swollen inside enough that it is going to be a while.
The next good news is that tomorrow they are going to take her down for an MRI. The MRI will give them more detail of the injury and also will look at her neck to be sure there is no injury there. MRIs are better at looking at soft tissues like ligaments. Supposedly if that comes back without injury, they will take off the cervical collar which is most annoying to her! Along with that good news, if everything comes back good from the MRI and her breathing stays as it has been, they will take out the ventilator tube!!! We will be so excited but not nearly as excited as I am sure she will be. If we get the cervical collar off and the ventilator out, we will really be able to see more of her sweet face.
So we have taken several more steps forward without any backward steps. It is so great! We seem to bask in the warmth of the faith, love and Spirit that we are feeling. The comments on the blog and emails are amazing. Thank you all. We continue to hear of people's personal experiences and miracles in their lives because of this whole ordeal. I believe that God is involved in the details of our lives. And I believe that there is purpose in all that happens in life. We would never ask for this trial and we would never want Shanny to go through what she is going through. But if we learn all that we can learn from this experience, her suffering will not be in vain.
Bless her heart, the last time they suctioned her, I saw a tear roll down her cheek. It made me cry. It isn't fair....life isn't fair, there are twists of fate that are uncontrollable, hard, tough, no fun, etc. But we make it through because of those who love us and mostly because of the love of the Lord. We can't say it enough...thank you for your faith, love, prayer, support and all you do.
Pheobe
Shannon has squeezed my hand numerous times including on demand today. She frequently raises her hands as far as the restraints will let her go. I saw her once bring her hands together and started scratching at the sat probe (measures her oxygen levels). I quickly pulled her hand away and explained what it was. She seemed to relax after that. Most all of her movements are meaningful. She raises her eyebrows in the attempt to open her eyes but they still are swollen inside enough that it is going to be a while.
The next good news is that tomorrow they are going to take her down for an MRI. The MRI will give them more detail of the injury and also will look at her neck to be sure there is no injury there. MRIs are better at looking at soft tissues like ligaments. Supposedly if that comes back without injury, they will take off the cervical collar which is most annoying to her! Along with that good news, if everything comes back good from the MRI and her breathing stays as it has been, they will take out the ventilator tube!!! We will be so excited but not nearly as excited as I am sure she will be. If we get the cervical collar off and the ventilator out, we will really be able to see more of her sweet face.
So we have taken several more steps forward without any backward steps. It is so great! We seem to bask in the warmth of the faith, love and Spirit that we are feeling. The comments on the blog and emails are amazing. Thank you all. We continue to hear of people's personal experiences and miracles in their lives because of this whole ordeal. I believe that God is involved in the details of our lives. And I believe that there is purpose in all that happens in life. We would never ask for this trial and we would never want Shanny to go through what she is going through. But if we learn all that we can learn from this experience, her suffering will not be in vain.
Bless her heart, the last time they suctioned her, I saw a tear roll down her cheek. It made me cry. It isn't fair....life isn't fair, there are twists of fate that are uncontrollable, hard, tough, no fun, etc. But we make it through because of those who love us and mostly because of the love of the Lord. We can't say it enough...thank you for your faith, love, prayer, support and all you do.
Pheobe
Good Progress During the Night
I just thought I'd give a quick update of Shannon's progress during the night. She did well with her pressures, temperatures, and other indicators. She increased her movements during the night and started to get irritated with her breathing tube. As morning approached, she wanted to grab at it and get rid of it, so much so that she has now graduated to having restraints on her wrists to limit her movement to prevent that. Her breathing continues to improve and they are decreasing the support the ventilator provides. So we continue to see improvements and look forward to what today will bring. We are grateful for her progress and for the love and support from all of you.
Wednesday, May 19, 2010
More good news
So Shannon is continuing to wake up and show more movement. They were just in here suctioning her out again. She moved her left arm up all the way to the mouth and touch the nurse that was suctioning her out. She also moved up her legs. Very good signs. I went up and was talking to her. I was asking her to squeeze my hand. She was moving her eyes to look at me. I was holding both hands and she moved her thumb on the right hand feeling around my hand. Then she lifted up her left hand and shift grips to more of a arm wrestling grip and gave me a good squeeze. It was exciting. I tried for a second squeeze, but she seemed to fall back to sleep.
I am taking over the night watch for a while to give my parents a few hours or so of sleep. It will be some good news to give them when they wake up.
All Steps Forward!-wait..WOW!!
Shannon does have her favorites! One of the main nurses she has is named Jamie. It seems that the next step forward always comes when Jamie is here! Jamie came on and that's when all the cool stuff earlier reported started to happen. And she continues to be successful! We have had several more good signs! Shannon is coughing with nearly every suction and some times without the stimulus. We need the coughing to continue to break up the pneumonia. This may be just too gross to know but when they suction, they are sticking a small suctioning tube down in to her lungs, in her throat and mouth. The more Shannon coughs the more of that junk they get out. They suction her about every 2 hours. When Jamie was suctioning in her mouth a little bit ago, Shannon was moving her tongue all around and it is back to that cute resting spot that you can see when she is concentrating! :) So although we feel bad for her when they suction her, because of what we see, we really don't feel too bad!
Aaron mentioned that after a person withdraws from the pain, then the next step is going to the pain. We're there! When the doctors came in and pinched her, she reached for the spot they were pinching! She almost crossed midline which is another little step. She is also consistently moving her arms and her legs with the stimuli.
Jamie just changed the pads on her cervical collar. It has a front and a back to it. A skilled person holds her head and neck, they remove the front, take out the pads, put new ones in and then replace the collar. While they were doing that Shannon started moving her head back and forth! She grimaced when Jamie was wiping a sore spot! She's coming awake!
Shannon wears a cervical collar because her neck has not been cleared which means all accident patients wear the collar until they get an MRI or a clinical exam to ensure that there was no injuries to the neck. So not to worry.
They have started to wean her off the ventilator and she has started taking a few breaths of her own. The ventilator is such a sophisticated machine that it can tell when she draws in air and how much, then it compensates to maintain the correct amount of oxygen. The same process for breathing out. Amazing!
Another good sign is her pupils are now reactive! So MUCH in one day! What a miracle in and of itself. Shannon is still very much unaware of what is going on around her but we are headed in the right direction.
Interruption...
Just got the report in that her pentibaritol level is now at a 5! So they have decreased versaid down to a 1 and a couple other adjustments to continue the waking up process. So it has been a very very good day. The doctors are very pleased and we have been elated to see so much happening in one day!
Interruption...
Holy Cow!! I can't get this written before there is more exciting news to share! Jamie said to Shannon "I am going to suction you out again." Immediately Shannon's right eyebrow went up as if to say, "you're what?" Then Jamie asked her to look at her and we saw the slightest movement of her one eye. Then she told her to look at me and we saw a definite turn of the eye in my direction!! Her eyes are partially open still because of the swelling but when Jamie said "open your eyes, Shan", that right eye brow went up again! After the suctioning, Jamie asked Shannon to squeeze her hand and Shannon squeezed her left hand. After all of that, she then gave us an ICP level of 17! Down from the 20-22s we have had today--goal is below 20 and the lower the better.
It is so humbling to see these miraculous steps and to know that the Lord made these incredible bodies to function as they do. We have so MUCH to thank the Lord for tonight! Ours--yours and so many other prayers are being heard and answered. Thank you!
Aaron mentioned that after a person withdraws from the pain, then the next step is going to the pain. We're there! When the doctors came in and pinched her, she reached for the spot they were pinching! She almost crossed midline which is another little step. She is also consistently moving her arms and her legs with the stimuli.
Jamie just changed the pads on her cervical collar. It has a front and a back to it. A skilled person holds her head and neck, they remove the front, take out the pads, put new ones in and then replace the collar. While they were doing that Shannon started moving her head back and forth! She grimaced when Jamie was wiping a sore spot! She's coming awake!
Shannon wears a cervical collar because her neck has not been cleared which means all accident patients wear the collar until they get an MRI or a clinical exam to ensure that there was no injuries to the neck. So not to worry.
They have started to wean her off the ventilator and she has started taking a few breaths of her own. The ventilator is such a sophisticated machine that it can tell when she draws in air and how much, then it compensates to maintain the correct amount of oxygen. The same process for breathing out. Amazing!
Another good sign is her pupils are now reactive! So MUCH in one day! What a miracle in and of itself. Shannon is still very much unaware of what is going on around her but we are headed in the right direction.
Interruption...
Just got the report in that her pentibaritol level is now at a 5! So they have decreased versaid down to a 1 and a couple other adjustments to continue the waking up process. So it has been a very very good day. The doctors are very pleased and we have been elated to see so much happening in one day!
Interruption...
Holy Cow!! I can't get this written before there is more exciting news to share! Jamie said to Shannon "I am going to suction you out again." Immediately Shannon's right eyebrow went up as if to say, "you're what?" Then Jamie asked her to look at her and we saw the slightest movement of her one eye. Then she told her to look at me and we saw a definite turn of the eye in my direction!! Her eyes are partially open still because of the swelling but when Jamie said "open your eyes, Shan", that right eye brow went up again! After the suctioning, Jamie asked Shannon to squeeze her hand and Shannon squeezed her left hand. After all of that, she then gave us an ICP level of 17! Down from the 20-22s we have had today--goal is below 20 and the lower the better.
It is so humbling to see these miraculous steps and to know that the Lord made these incredible bodies to function as they do. We have so MUCH to thank the Lord for tonight! Ours--yours and so many other prayers are being heard and answered. Thank you!
Shannon's waking up!!
Nothing but good news from rounds today.
Not only is Shannon continuing to cough spontaneously from time to time, but this morning she turned her head while the nurse was suctioning out her nose. Her pupils have become more reactive albeit sluggish. Then on rounds she moved (withdrew to pain) her right leg and shrugged both shoulders! These are the first signs that not only is the sedation wearing off but also giving us a picture of her neurologic function and slow recovery. As the sedation wears off and she begins to recover, we would expect her to first withdraw (or move away from painful stimulus), then localize (move toward the pain), then move spontaneously, and then follow commands. On rounds they turned down her versed and fentanyl medications to lighten up her sedation. Hopefully her ICPs will stay down and we will begin to see more motor functions.
Everything else is going well too. She is maintaining adequate blood pressures so they have stopped the BP medication (norepinephrine). They are also going to begin to increase her tube feedings as she is having more signs of bowel function. They are starting to wean her off the ventilator support and hopefully as the sedation continues to be weaned, we will begin to see spontaneous breathing. She did have a fever last night which is not unexpected as she has multiple reasons to be febrile. All her cultures have been negative except the lungs and she is on appropriate antibiotics for that. All good things. Baby steps, small miracles, tender mercies....
Not only is Shannon continuing to cough spontaneously from time to time, but this morning she turned her head while the nurse was suctioning out her nose. Her pupils have become more reactive albeit sluggish. Then on rounds she moved (withdrew to pain) her right leg and shrugged both shoulders! These are the first signs that not only is the sedation wearing off but also giving us a picture of her neurologic function and slow recovery. As the sedation wears off and she begins to recover, we would expect her to first withdraw (or move away from painful stimulus), then localize (move toward the pain), then move spontaneously, and then follow commands. On rounds they turned down her versed and fentanyl medications to lighten up her sedation. Hopefully her ICPs will stay down and we will begin to see more motor functions.
Everything else is going well too. She is maintaining adequate blood pressures so they have stopped the BP medication (norepinephrine). They are also going to begin to increase her tube feedings as she is having more signs of bowel function. They are starting to wean her off the ventilator support and hopefully as the sedation continues to be weaned, we will begin to see spontaneous breathing. She did have a fever last night which is not unexpected as she has multiple reasons to be febrile. All her cultures have been negative except the lungs and she is on appropriate antibiotics for that. All good things. Baby steps, small miracles, tender mercies....
Middle of the night!
Shannon just coughed on her own, out of the blue, without the stimulation of the ventilator suction tube!! It's a little miracle but I about scared the nurse to death when I jumped up out of my chair, diving for her, saying "ya, Shannon"!
Tuesday, May 18, 2010
A word from Nate
I felt like I should write about some of my observations now that I am here in Utah. I spent the afternoon and evening at the hospital. It was good to visit with my parents, and to hear tidbits of the support that they have felt from all types of people who Shannon has influenced. I gave a talk in church on Sunday about our legacy. I came up with a definition that I think fits well. A legacy is something that we create ourselves but it is defined by those who see us. Shannon has definitely created a wonderful legacy to all those that she comes in contact with. Whenever I think of Shannon, I think of her infectious smile and the love that she shows others.
As I looked at Shannon today, she looked like she was at peace. I am sure her body and spirit are fighting to get better, and to be healed. However, I know that she was happy. I could almost see her smile.
My mother has mentioned about some of the smaller miracles that she has experienced as Shannon has begun her journey to recovery. I often ask myself in times like this, what I can learn from it. I remember of the time I was in the hospital with appendicitis. While I was recovering from my surgery, Aaron came to visit. He told me "Just think. A hundred years ago, you would be dead right now." He said it in a joking tone. I have reflected on that and know that modern medicine is a huge miracle. Shannon probably wouldn't be alive, if we didn't have some of the miraculous machines that are helping Shannon heal, from the ventilator to the helicopter that took her from Utah Valley to Primary Children's. Each of those is a miracle. Sometimes it just takes us looking at a problem in a different light to see the blessings we have.
A final note about visitors. Aaron posted some good advice about coming to visit. I want to reiterate that, but also let you know that visitors are welcome. My parents are uplifted by those who stop by to give them support and tell them how much they love them. I am grateful for all those who have reached out to help my family during this time. It means a lot to all of us.
A Different Waiting Game
One of the things that we must really need to learn is patience. We were first in the waiting game for brain swelling to peak and subside (the 72-96 hour mark we mentioned before). We now seem to be waiting for the effects of the sedatives to wear off. We got some interesting information on the Pentobarbital that she was on as a result of blood level tests that gave us some insight as to the overall level of sedation she is trying to deal with. When Pentobarbital is used for seizure control, the therapeutic level is about 7. Shannon's levels from yesterday after she had been off the medication for 24 hours was 25, and today it was still at a level of 13. In addition to that, she is still on the Fentanyl and Versed which were the original meds she was on to put her under. One doctor described it as her still being in a level of sedation similar to anesthesia during surgery. We are hoping that the Pentobarbital will continue to decline during the night and that her pressures will be stable or preferably decline so that we can start to reduce her other medications a little tomorrow. Her cough reflexes have gotten stronger today when they suction fluids from her airway and there are more rumblings in her digestive tract. So small but meaningful steps.
One interesting item to mention. Aaron spoke with the head trauma surgeon that he works with back in North Carolina and reviewed the facts and observations of Shannon's case just to get his impression. He is exclusively involved in trauma cases and sees multiple head injury cases per day. He felt that the care Shannon was receiving was very appropriate and given all of the circumstances was not concerned about her pupils and general responsiveness, but seemed optimistic given her age, health, and treatment. He encouraged us to view progress by week, not by day or by hour. There are bumps along the way in every case, but as you look at things over a longer horizon, you can really see progress. We can certainly see that as we look where we have come from in the past six days.
Nate and Jess made it down from Seattle today. They got the girls settled at our house and then Nate came up to spend some time with us and with Shannon. We are glad to have them here and appreciate their help. Kate has been (and continues to be) a trooper caring for Tonya and keeping us supplied with the clothes and things we need. One other note, we got a surprise visit today from Nephi and Clare Moon. Many of you may know that Nephi was working on our home in February, removing Christmas lights, when he fell off of the roof and suffered severe head trauma and other injuries. Many of the things that Shannon experienced in the early stages paralleled Nephi's experience. We are counting on that parallel to continue, as Nephi has experienced a complete recovery. So it was particularly meaningful to us to have them take time to visit, share in our concerns and strengthen our faith.
Thank you for your comments and emails. You have no idea how much it means to us to hear of the love and concern you have for Shannon and for us. We feel your faith and your support and appreciate the prayers that are offered continuously in Shannon's behalf.
Tuesday Morning
Shannon had a good, stable night. She has continued to have a good cough reflex, in fact it is more consistent and stronger. She hasn't done anything else but she is still on fentanyl and versed for pain and sedation, plus the pentabarbital effects are probably still on board. We just need to give her more time. Her ICP have definitely peaked and are staying down (highest was 19 overnight) suggesting that the brain swelling is starting to subside. They probably turn down the fentanyl and versed for at least another 24 hours to make sure the ICPs stay down. Another good sign is her diabetes insipidus has resolved--she is maintaining her sodium levels without the vasopressin (medication to treat the DI). Her EEG is constantly active. I don't know how to read EEGs but there is definitely more activity when Shannon is simulated--even just when her arm is rubbed--which is pretty exciting to see.
Her pneumonia is getting better--her white blood cell count is down and she's doing better on the ventilator. They have taken her off one antibiotic based on the preliminary lung cultures. There are going to start her tube feedings back slowly to try to get some nutrition. If she can't tolerate it, they will likely start TPN (nutrition in her IV) tomorrow. She has been weaning down off the levophed (BP medication) which was being used to maintain adequate blood flow to her brain. Hopefully she can be weaned off it completely today.
We are anticipating another slow stable day and are praying for more small signs of waking up. The PICU attending that took care of her over the weekend stopped by and was encouraged by her progress and simple said, "Time is on our side." The waiting continues painfully slowly but she appears to be out of the acute dangerous time period--now we need to faithfully and patiently wait.
Her pneumonia is getting better--her white blood cell count is down and she's doing better on the ventilator. They have taken her off one antibiotic based on the preliminary lung cultures. There are going to start her tube feedings back slowly to try to get some nutrition. If she can't tolerate it, they will likely start TPN (nutrition in her IV) tomorrow. She has been weaning down off the levophed (BP medication) which was being used to maintain adequate blood flow to her brain. Hopefully she can be weaned off it completely today.
We are anticipating another slow stable day and are praying for more small signs of waking up. The PICU attending that took care of her over the weekend stopped by and was encouraged by her progress and simple said, "Time is on our side." The waiting continues painfully slowly but she appears to be out of the acute dangerous time period--now we need to faithfully and patiently wait.
Deep Thoughts from Pheobe
I received an email last night from a very good friend who gave me this quote, "Miraculous doesn't mean instanteous." I have thought a lot about that and have another insight perhaps. When Christ performed his miracles instantly, there were many who still did not believe. I think when we are waiting for a miracle, the Lord is going to continue to try our faith so that we grow and learn to trust in Him. Miracles take time for the Lord to do his work. We will continue to petition the Lord for the miracle we want.
The other thought that I had this morning was that it doesn't matter how much the doctors or nurses know or what they do; its only the Lord that controls the outcome. That in and of itself can bring great comfort.
And for a little levity ... you know in the story of Peter Pan when Tinker Bell had drank Peter's poison? Peter asks the audience to yell, "I believe in fairies!" Soon he has everyone in the audience yelling, "I beleive in fairies!" And soon Tinker Bell is zipping around like her old self. I think we should wake Shan up with our phrase being "I believe in miracles!" :)
Thanks to all of you for your faith and prayers! Pheobe
The other thought that I had this morning was that it doesn't matter how much the doctors or nurses know or what they do; its only the Lord that controls the outcome. That in and of itself can bring great comfort.
And for a little levity ... you know in the story of Peter Pan when Tinker Bell had drank Peter's poison? Peter asks the audience to yell, "I believe in fairies!" Soon he has everyone in the audience yelling, "I beleive in fairies!" And soon Tinker Bell is zipping around like her old self. I think we should wake Shan up with our phrase being "I believe in miracles!" :)
Thanks to all of you for your faith and prayers! Pheobe
Monday, May 17, 2010
Hospital Visitors
This is Aaron again. I'd like to personally thank all those you have sent emails, posted comments on the blog or Shannon's facebook, called, left messages, and visited the hospital. You have been an inspiration and a source of strength and comfort, especially to my parents. They feel of the love and concern you have for them and for their sweet daughter. It is amazing to read and realize the impact my dear sister Shannon has had on some many lives. Shannon's friends that we didn't even know about and friends that we haven't seen or heard from for years have contacted us and given us so much strength. Thank you for your prayers, your words of encouragement, your service, your support, and your love and concern. We will forever be grateful and indebted to you.
We have had many visitors at the hospital over the past few days. They have been a great source of comfort and encouragement for my folks. It has given them the chance to be out of the PICU, get their eyes off the monitors and their minds off the endless waiting. For those of you planning on coming to the hospital I'd like to ask for several favors.
--First, the PICU has strict visiting rules and only immediate family members are allowed to see Shannon right now. But more importantly we want to respect Shannon--we are sure that she doesn't want her friends and family to see her in this condition (one reason why we aren't posting pictures on the blog). Certainly this might change once Shannon is awake and able to realize who is visiting and interact with them.
--Second, please contact my folks before coming, either by email (easiest) or by leaving a message on their phones. There are times that they need to be in the room to meet with doctors and there is the potential of multiple people wanting to visit at the same time-feast or famine kind of thing. That way they can also meet you in the lobby or cafeteria at a specific time since their cell phones do not work in most areas of the hospital including the PICU.
--Third, please do not stay too long--30 minutes is a good amount of time. They want to see you and visit with you but after a while they get anxious about being away from Shannon too long and have a hard time saying good-bye. They really have some great friends that they appreciate and love.
Again, thank you for all you are doing for Shannon and my parents. Please do not interpret these requests as asking you not to come because my parents need your continued love and support.
We have had many visitors at the hospital over the past few days. They have been a great source of comfort and encouragement for my folks. It has given them the chance to be out of the PICU, get their eyes off the monitors and their minds off the endless waiting. For those of you planning on coming to the hospital I'd like to ask for several favors.
--First, the PICU has strict visiting rules and only immediate family members are allowed to see Shannon right now. But more importantly we want to respect Shannon--we are sure that she doesn't want her friends and family to see her in this condition (one reason why we aren't posting pictures on the blog). Certainly this might change once Shannon is awake and able to realize who is visiting and interact with them.
--Second, please contact my folks before coming, either by email (easiest) or by leaving a message on their phones. There are times that they need to be in the room to meet with doctors and there is the potential of multiple people wanting to visit at the same time-feast or famine kind of thing. That way they can also meet you in the lobby or cafeteria at a specific time since their cell phones do not work in most areas of the hospital including the PICU.
--Third, please do not stay too long--30 minutes is a good amount of time. They want to see you and visit with you but after a while they get anxious about being away from Shannon too long and have a hard time saying good-bye. They really have some great friends that they appreciate and love.
Again, thank you for all you are doing for Shannon and my parents. Please do not interpret these requests as asking you not to come because my parents need your continued love and support.
Cough baby cough
The great news tonight is that Shannon has regained her cough reflex. That means that the coma medication is finally starting to wear off. Her pupils haven't changed since this morning and she doesn't have a gag reflex, but it is the first sign of recovery. By small miracles will great ones come to pass.
Shannon was stable most of the day. Her ICPs have remained down despite coming off the paralytic. She continues to have a lot of lung secretions that need to be suctioned out but that goes with the pneumonia. The coughing has occurred with suctioning which has helped get those deep secretions out. They haven't been able to start her tube feeds back up but hopefully tomorrow. The EEG is constantly active showing us that she has good brain activity. The swelling in her face continues to improve.
Shannon was stable most of the day. Her ICPs have remained down despite coming off the paralytic. She continues to have a lot of lung secretions that need to be suctioned out but that goes with the pneumonia. The coughing has occurred with suctioning which has helped get those deep secretions out. They haven't been able to start her tube feeds back up but hopefully tomorrow. The EEG is constantly active showing us that she has good brain activity. The swelling in her face continues to improve.
Quick update
We got the twitch!! That just means that the paralytic has worn off. We hadn't been able to get the twitch in her hand and it was way past time to see it. They finally tried a different nerve stimulator and we got the twitch. It's a little thing but we'll take it! She is still coming out of the coma sleep (sorry I can't use the fancy terminology) so it will still be a while before she moves on her own. That was some powerful drug they had to use.
We do so appreciate the emails and blog comments. They do strengthen us. But if you think we may not know you, please tell us who you are; high school friend, debater from ___, friend of so and so, etc. It just helps us appreciate the influence Shannon has had.
We do so appreciate the emails and blog comments. They do strengthen us. But if you think we may not know you, please tell us who you are; high school friend, debater from ___, friend of so and so, etc. It just helps us appreciate the influence Shannon has had.
Monday Morning
Shannon has had a pretty good morning. Her paralytic has been off for 5 hours but we still are waiting for a reliable neurologic exam--no movements yet. Her pressures are staying down (20 and less). Her neurosurgeon, Dr. Walker, rounded on her earlier and said her ICPs have been acceptable and he does not place a lot of weight in her pupils right now because there are so many things that could be effecting them. He felt that she was still in the critical time period for another few days. He confirmed that Shannon has a significant amount of DAI (diffuse axonal injury) but while it is still way too early to know for sure, he was hopeful that she would make a "meaningful recovery." The recovery road ahead will be long and difficult.
The newest development this morning is that Shannon has developed pneumonia. Her white blood cell count is elevated (16) and she has 40% bandemia which is a sign of acute infection. She is having more secretions from her lungs and her x-ray is much worse than it was two days ago. All that points to pneumonia, but they are checking for other sources of infection. She has been placed on strong broad-spectrum antibiotics and have sent cultures to see which bacteria are causing the infection. The good news is she has not required more respiratory support from the ventilator. They have increased the PEEP setting on the ventilator which will help keep her lungs more expanded but it was a prophylactic measure rather than a response to her lungs not working well. Her lungs are healthy at baseline and pneumonia is extremely common in trauma patients on the ventilator so while this is a "setback" it is very manageable and I suspect she will get over it quickly.
Shannon also has developed an ileus--where the intestines slow down in response to the medication she is getting. This means that the nutrition she was getting was not going through her intestines quickly enough and things were backing up. They have stopped her tube feeds and are given her some medication to help stimulate her bowels. Hopefully they will be able to restart the nutrition later today.
We continue to feel at peace, knowing the Lord is in charge. We appreciate all your thoughts and prayers. Shannon has received several incredible blessings that have blessed her with full recovery. We trust in the Lord and know that He's plan for Shannon and for us will be what is best. Aaron
The newest development this morning is that Shannon has developed pneumonia. Her white blood cell count is elevated (16) and she has 40% bandemia which is a sign of acute infection. She is having more secretions from her lungs and her x-ray is much worse than it was two days ago. All that points to pneumonia, but they are checking for other sources of infection. She has been placed on strong broad-spectrum antibiotics and have sent cultures to see which bacteria are causing the infection. The good news is she has not required more respiratory support from the ventilator. They have increased the PEEP setting on the ventilator which will help keep her lungs more expanded but it was a prophylactic measure rather than a response to her lungs not working well. Her lungs are healthy at baseline and pneumonia is extremely common in trauma patients on the ventilator so while this is a "setback" it is very manageable and I suspect she will get over it quickly.
Shannon also has developed an ileus--where the intestines slow down in response to the medication she is getting. This means that the nutrition she was getting was not going through her intestines quickly enough and things were backing up. They have stopped her tube feeds and are given her some medication to help stimulate her bowels. Hopefully they will be able to restart the nutrition later today.
We continue to feel at peace, knowing the Lord is in charge. We appreciate all your thoughts and prayers. Shannon has received several incredible blessings that have blessed her with full recovery. We trust in the Lord and know that He's plan for Shannon and for us will be what is best. Aaron
A Good Night!!
I couldn't wait to come to the blog this morning to report the latest. Shannon had a really good night. Her numbers stayed down ALL night even when they moved her all about to bathe her and change her linens! As I walked in at 6 this morning, I looked at the EEG and it was almost constant activity! That means she is slowly waking up! The unit doctor came in and checked her pupils and he, nor I, saw anything. Shan and I had a little chat and when her ICU pediatric doctor came in, she checked her pupils and we both saw a very slight change but a change none the less!! That was so awesome to see. It is amazing how the tinyiest signs of progress are such great victories. More swelling has gone down in her face and my opinion mostly her forehead area which makes me feel (although I am not a doctor) that some of the brain swelling is going down. Another wonderful ity bitty sign but such a positive one. The unit doctor felt good enough about things that they have turned off the paraltic drug so they can try again for a neurogical exam.
I think I realized a great lesson yesterday. We continue to see lots of little miracles along the way. But there are still times of the testing of our faith. Yesterday, especially the morning was a very tough day. It was very hard to have the faith be strong enough to dispel the fear. There will be many more trials of our faith along the way to the overall miracle of Shannon's full recovey. I think we have baby step trials of our faith when we are in the midst of one big crisis so our faith can grow. How grateful I am to the Lord for helping us to grow a little at a time, that although we expect a miracle from Him, He only expects us to take one baby step forward at a time. And He helps to make even those baby steps possible.
We know that your faith, prayers and fasting are making a difference. We know the Lord is hearing them all. Your faith is sustaining us and helping us through each day. Thank you to all the little children, who we know their faith is pure, for praying for Shannon. Please tell them she feels their prayers and Heavenly Father is listening. We know He is. Pheobe
I think I realized a great lesson yesterday. We continue to see lots of little miracles along the way. But there are still times of the testing of our faith. Yesterday, especially the morning was a very tough day. It was very hard to have the faith be strong enough to dispel the fear. There will be many more trials of our faith along the way to the overall miracle of Shannon's full recovey. I think we have baby step trials of our faith when we are in the midst of one big crisis so our faith can grow. How grateful I am to the Lord for helping us to grow a little at a time, that although we expect a miracle from Him, He only expects us to take one baby step forward at a time. And He helps to make even those baby steps possible.
We know that your faith, prayers and fasting are making a difference. We know the Lord is hearing them all. Your faith is sustaining us and helping us through each day. Thank you to all the little children, who we know their faith is pure, for praying for Shannon. Please tell them she feels their prayers and Heavenly Father is listening. We know He is. Pheobe
Sunday, May 16, 2010
Bedtime on Sunday
Shannon has been pretty stable this afternoon and evening. Her pressures for the most part have remained in a good range and the continuous EEG shows that the effects of the Pentabarbitol are wearing off slowly. The rate at which that happens varies for each patient. The doctors will monitor that and see when they are ready to take her off the paralytic meds and see how she reacts, both in terms of pressures and neurological response. We are hoping that we have passed the peak swelling in her brain, that tonight will be uneventful, and that Shannon can rest well and gear up for tomorrow.
We offer our deep gratitude for your support, faith and prayers. We are amazed at the far-reaching sphere of influence this young girl has. Her example makes all of us want to be better, to be more willing to care for one another, and to sacrifice for one another. At home she begins every prayer by saying, "Heavenly Father, We love thee so very much!" We know He loves her too and is mindful of her.
Sunday afternoon--96 hours
Today has been a rough day. Peak brain swelling was expected to occur at 72-96 hours after the injury. We have finally meet that hurdle and hope to see things start improving. The last post mentioned that her CT scan this morning was somewhat reassuring--the ventricles were actually bigger (they should be compressed if the brain was swelling ). At 7:15am, Shannon was taken off the pentabarbital (coma drug) and the vecuronium (paralytic) drips. The plan was to let the medication wear off so her neurologic function could be assessed. The paralytic effects wear off within 1 to 2 hours. The issue is the pentabarbital can take anywhere from hours to several days to wear off--everyone is different. Her ICPs continued to be elevated in the high 20's all morning and there was no change in her neurologic exam--no movements, no spontaneous breathing, no change in her brainstem reflexes (gag, cough, pupils). The neurosurgeons came in around noon and suggested that the paralytic be restarted to try to bring the ICPs down and give the pentabarbital time to wear off completely. Since the paralytic has been restarted the ICPs have dropped to around 20. The consequence of this plan is we won't be able to assess her neurologic functions while on the paralytic. They are going to hook her back up to the continuous EEG which will help us see when the pentabarbital effects begin to wear off. At that point the paralytic can be turned off and after an hour or two, we should be able to see what she will do neurologically. The wait continues...
The concern continues to be her pupils which should not be effected by the pentabarbital or paralytic. There are effected by fentanyl which she is on. Fentanyl should make her pupils pinpoint (1-2mm). Her pupils are 4mm and nonreactive. We continue to be hopeful that her swelling will start to subside and we will start to see some improvements.
On a lighter note...the nurse last night suggested that we buy Shannon some high top shoes to help prevent her ankles from becoming "frozen" pointing down. She wears them for several hours at a time. Her nieces in NC thought it was pretty funny that Shannon was "sleeping" in bed wearing shoes. I'll let you decided if we'll see Shannon wearing these shoes walking down the halls of Lone Peak as a big senior next year....
We continue to be hopeful and prayerful. We feel the strength of the Lord and the strength of your prayers and support. He is in control and we trust in Him.
The concern continues to be her pupils which should not be effected by the pentabarbital or paralytic. There are effected by fentanyl which she is on. Fentanyl should make her pupils pinpoint (1-2mm). Her pupils are 4mm and nonreactive. We continue to be hopeful that her swelling will start to subside and we will start to see some improvements.
On a lighter note...the nurse last night suggested that we buy Shannon some high top shoes to help prevent her ankles from becoming "frozen" pointing down. She wears them for several hours at a time. Her nieces in NC thought it was pretty funny that Shannon was "sleeping" in bed wearing shoes. I'll let you decided if we'll see Shannon wearing these shoes walking down the halls of Lone Peak as a big senior next year....
We continue to be hopeful and prayerful. We feel the strength of the Lord and the strength of your prayers and support. He is in control and we trust in Him.
Sunday Morning
This morning is a crucial time for Shannon and we can use all the faith and prayers available. Shannon's pressures rose during the night and at 6am she had an additional CT Scan. The results of the scan seemed to be at odds with the numbers being presented, according to the attending physician. The plan had been to take her off of the sedation medication today and see how she would respond. The doctor felt like the best thing to do would be to get her off of the Pentabarb (sedative) and the paralytic drugs so that they could see what her body would do. So at 7:15am they took her off of the medications and are in the process of letting the levels of those medications decrease so that they can see how she responds physically. They are looking for responses in how her pupils react, motor functions, and anything else that will give them an idea of how her brain is functioning. Now it is up to Shannon!!
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