Wednesday, June 30, 2010

The Last 7 Weeks in Review

Since Pheobe has been making the entries in the blog for the past few days, we thought it would be a good idea for me to take a turn. Today has been a monumental day for Shannon. After seven weeks in the hospital, she was discharged and was able to return home!! She didn't want a lot of fanfare. The folks at the hospital asked her if she wanted to have a celebration before she left and she declined saying she just wanted to get home. The morning was spent with last minute check-ups and conversations with doctors and nurses. We made a trip over to the PICU to see if some of the doctors and nurses who had worked with Shannon were there today so that she could say good-bye (even though she doesn't remember them very well, if at all). But most of them were not working today, so we went back to the room and hung out. At about 11:30 she was discharged and on her way home--and she was excited. She didn't want to stop and get anything to eat, she just wanted to get home and have home food. It was fun to watch her savor the joy of being back home--she gave her sister Tonya a big hug and was excited to check out the house. She was thrilled to be back in her own bathroom and when she looked at her bedroom she said it looked like heaven. She has adjusted well so far and has been really good with understanding and complying with her schedule, goals, rules and directions. Her eye contact and conversation has been great and she has just been happy to be home.
The day has been a time of sweet and poignant reflection for me as I have thought back on the events of the past seven weeks, the miracles witnessed and the lessons learned. As I drove up to the hospital this morning to join with Pheobe and Shannon in the discharge process (and really to be a means of carting all of her stuff home), I was reminded of a much more anxious drive seven weeks ago today. I thought of the miracle that day of having two wonderful doctors, Dr. Walker and Dr. Maloney, on call and waiting to give Shannon the immediate and critical care that was needed. Their experience and wisdom was a tremendously calming influence on me. I recall turning to Dr. Maloney as they were taking Shannon away for emergency surgery and saying, "Take good care of her--she's my baby." And take good care of her he did, with the help of so many other wonderful and capable doctors and nurses. Dr. Maloney came by Shannon's room yesterday afternoon shortly after we had received word that she would be going home today. His expression was one of pure joy as he talked to her and marveled at the progress she had made since that night seven weeks ago. When I got to the NTU this morning, the first person I ran into was Dr. Walker and I shared with him the news of Shannon's discharge. He was pleased and expressed his continued optimism for her progress and recovery. I was grateful for the chance I had again to thank him for saving Shannon's life and being so helpful and wonderful during her recovery. Feelings were tender as we said good-bye and thank you to therapists and nurses. Wonderful neighbors welcomed us home with banners, balloons and food.
This evening as Shannon was getting ready for bed, Kate, Pheobe and I had family prayer with her. Pheobe expressed our gratitude for the many miracles that have happened which have brought us to this point. After the prayer, Shannon wanted to hear about some of those miracles again, so Kate shared with her the things that transpired right after the accident and recounted the speed with which help was summoned and arrived, the people who were in the right place at the right time to help, comfort and sustain, and so many other things that happened right from the beginning. I thought about the testimony of Elder Bednar a few years ago regarding the tender mercies of the Lord. "I testify that the tender mercies of the Lord are real and that they do not occur randomly or merely by coincidence. Often, the Lord’s timing of His tender mercies helps us to both discern and acknowledge them." There are so many times during the past seven weeks when we have seen these tender mercies come as a timely visit or telephone call, a feeling of comfort and assurance, a flash of inspiration or the expression of love and understanding. We are so deeply grateful for the countless acts of kindness towards us, the never ending stream of prayers offered, the faith that has been exercised and the sustaining hand of the Lord in each step that we have taken.
Today marks a significant step in Shannon's recovery. But it also serves as a reminder of the path that lies ahead. She has made unfathomable progress in the past seven weeks. Each day we learn more about Traumatic Brain Injuries and the way they are manifest. If you were to look at Shannon today, you would see a young woman with shorter hair, someone who is a bit skinnier than she was before, and you might be inclined to say "Oh good, Shannon's back." But as Pheobe mentioned yesterday, we have also seen to some degree or another, the effects of the TBI that the medical professionals have been teaching us about. We remain confident in Shannon's continued recovery, but the time horizon for that recovery is in months and years, not in hours and days. So please don't feel bad if we are overprotective parents and limit her time with friends and visitors. We are trying to implement the training and recommendations that we have received and are trying to do what we feel is in Shannon's best long-term interest. Please call or email us if you would like to visit and we will do our best to accommodate. We don't want her to get over-stimulated or fatigued. We are following the directions of the main Rehab doctor who advised Shannon (and us) to "start low and go slow." Thanks for your understanding and for your continued support. Today has been a great day. We are thrilled to have Shannon back at home and she is thrilled to be here.

Tuesday, June 29, 2010

Yes! We Are!

Going Home! Surprising developments for Udell and I but good news for Shannon! She is going home tomorrow! She is very excited and thrilled to be going. Mom and Dad are glad to be leaving the hospital too but WE recognize the challenges ahead. We are concerned some for how Shan will respond when she gets home, and realizes she "won't wake up from the nightmare" that she thinks she is having. Reality may hit very hard.

Our road is far from being over. Therapies will begin again on Thursday. Shan still needs to eat enough and drink enough so we will be tracking that. The home schedule won't change much from the hospital schedule. People who would like to call or visit Shannon need to set up a time by contacting me. She cannot have too many visitors in one day and they can't stay for very long. Until we see that Shannon has built up her endurance, we still need to limit her activities. The tough part will be that she won't think she needs to have her activities curtailed and she will think she is just fine.

Her facebook will most likely be deactivated. She doesn't seem to want to follow the rules already. It is not uncommon. The "executive functions" capability are still impaired and it will take some time for those to come full circle. From the manual, "Traumatic Brain Injury, A guide for Families" it states, "Executive functions include planning, goal setting, self-monitoring, self control, self-initiating, self evaluating and flexible problem solving. Distractibility, poor organization, the inability to contol emotions and many other changes in behaviors are all signs of changes with the barain's ability to perform executive functions." Further the manual says "Each brain injury is different and so are the changes in behavior for each child. Behaviors often seen in children with tramatic brain injury (TBI) include:
*tiredness and fatigue
*poor organization
*irritablity and anger
*sexual inappropriateness
*social immaturity
*self centeredness
*passive behavior

We have seen all of the above behaviors in Shannon all ready. And to add to that, she is a teenager!! She won't be able to be left alone for quite a while. The doctors keep telling us that she will be very vunerable for the next year at least and that we will need to take some major steps to insure her safety. She won't like any of it but I guess most teenagers don't like any controls either.

It's a scary time but a promising time....we have looked forward to this day for a long time. It will be 7 weeks tomorrow.. Time for another major change in our journey of miracles. We, as well as Shannon will truly benefit from your faith and prayers. It will be more difficult to keep up with the blog but we will try. We have been told numerous times that the blog is helping different people. If, by us sharing our story and our faith, we can make a difference in someone else's life, it will be the least we can do to thank God for his many miracles!

Monday, June 28, 2010

Coming Home??

Our sweet Shannon is so ready to come home that that is all that she can focus on. We are really close to bringing her home but not yet. She has been doing well with her eating. They say she is getting enough calories but she is still losing weight so I am confused. I guess it is that she is eating the minimum required to leave the hospital but she still needs to increase that so she is getting 3000 calories a day. The brain is still repairing and while it does, it burns many more calories than the normal person. (Wouldn't that be nice?)
They are still adjusting medications to see if they can get the anxiety issues under control. Anxiety and depression are very common symptoms of brain injuries. She still needs to have an appointment with the eye doctors. But as far as the therapies go, she is darn close to passing off all goals she needs to pass in the hospital. The other issue that we are waiting on is for the insurance to get worked out with "Rehab without Walls" so that it will be a seamless transition from the hospital to home as far as the therapies go.
Obviously, just because we go home doesn't mean things are back to normal. Shannon will still have to have 24/7 supervision for quite some time. We will still need to count calories and fluids. She will still be having a lot of therapies. Visits will still have to be scheduled so there aren't too many at a time. So the biggest differences will be home cooking for Shannon and no driving to Salt Lake for Mom, Dad and Kate!
The turmoil I feel as I begin to plan for that transition (coming home) is pretty normal I am sure. These are the times that I get disappointed in myself for not focusing on and remembering all the miracles that have happened along the way. Why should it be so difficult for us humans to REMEMBER as the scriptures repeatedly tell us, so that new challenges are not so stressful? Well, maybe some of you are much better at focusing on those memories than I am. It is definitely something that I need to work on. I just keep thinking "Trust in the Lord in all thy doings and He shall direct thy paths." All I can say is I am working on it! :)
Shannon has actually been on her facebook a time or two. To all those that hear from her, please know that she is not well yet even if she thinks she is and when she says she is coming home tomorrow, that is her wishful thinking. However, wishes do come true and we know that her stay in the hospital now is very short. We promise to post it as soon as we know ourselves! Thank you again and again for your prayers. We are grateful for your comments, emails, food, visits, gifts, texts and oh so many things. I thought I was going to be able to keep track of all of it, so I could send out thank yous but sad to say, there have been so many that I couldn't keep track! So thank you all for giving so much. You know, I don't even know how to respond to the questions that people asked here on the blog. (Sorry :( )We are very elementary in our abilities with blogging! Hope everyone has a great Family Home Evening tonight!

Sunday, June 27, 2010

Another Sunday

Going on 7 weeks come Wednesday....
Sundays are a very quiet and relaxing day; a day of rest. Shannon got to sleep in until 8, had breakfast and a long bath and then went back to bed for a nap. The doctor came in doing rounds and hence, we missed being able to go to church. However, there are assigned brethren who come to the rooms where needed. It is such a touching experience when the Sacrament is blessed and passed just for 2 of you. How grateful I am that the Sacrament can be given wherever it is needed.
We had afternoon visitors which made the day delightful. It gives Shannon the opportunity to use those higher function thinking skills and for us to see where we need to help her work on those skills!! She has no hesitation in telling a nurse to leave or telling someone to go do something for her. Those skills, that are needed for proper social interactions will take a much longer time to relearn. It will take the help of family and friends to show her the way.
It was interesting today to listen to Shannon talk to a friend on the telephone. She told her she was coming home tomorrow. She's not that I am aware of! There were a number of things she said that made me realize that she hasn't quite got the picture yet. And she certainly repeats herself a lot as well. But, blessed be the saint that listens to her, without judgment and cares for her success even though she can be rude and ornery at times.

Saturday, June 26, 2010

Saturday in Rehab

This morning was jam-packed for Shannon. She woke and got ready for the day and at 8am started a three-hour block of non-stop therapy. First she did an hour of Physical Therapy, then an hour of Speech Therapy and then an hour of Occupational Therapy. She did well, even though it was a long haul. She had a nap, entertained some visitors (from whom she received two snow cones!) and then went on an outing away from the hospital with Mom and Dad. We went to get a Frosty from Wendy's and went to Paradise Bakery to eat. When we made it back to the hospital, it was time to chill out, watch a movie and then go to sleep.
The progress she continues to make in her therapies is encouraging, but it also brings the realization that higher-function skills are harder to come by and require more effort and a longer period of time to regain. Many of her current behaviors are typical of a traumatic brain injury, like the tendency toward impulsivity and the tendency to get stuck on a particular topic. Over the past several days she has been stuck on the idea of going home. She thinks that everything will be OK once she gets home. From her comments, she often thinks that once she is home all this that she is going through at the hospital will no longer be real. So we are trying to impress upon her mind that even after she gets home, many things are going to be needed to help her recover, and it is going to be a long process, likely a year or more. She will still need to maintain a tight schedule, she will still need to deal with anxiety and discouragement, she will still need rehab, she will still need to focus on adequate nutrition, she will still need a lot of sleep and a peaceful environment, she will still need to have visitors and visit times closely controlled, and so on. It makes us grateful for the help and support that comes from the medical team at the hospital, but also makes us overwhelmed to think about doing all those things at home. It reminds me of the line from the movie Shrek where Shrek says that ogre's are like onions, lots of layers. It seems that as we accomplish one step, new ones emerge with their own quirks and nuances. I guess it keeps us light on our feet. We appreciate your faith and support as we move along this path. Have a great Sunday of rest and preparation.

Friday, June 25, 2010

Great Day-Mostly

I told you about the switch-o, change-o yesterday. Early this morning, it wasn't sticking but after morning meds and getting dressed and ready for the day, Shannon did well. In fact, in the afternoon session of therapies she did amazingly well. She walked on the treadmill for 10 minutes without stopping thanks to her dad telling Brian Regan jokes. She took a 2 minute rest, got up and did another 5 minutes at a faster past! She was huffing when she got off but wow! She did so well. She scored 6 goals against a volunteer in beach ball soccor. She typed a page from a book that the therapist read to her. She was a little impulsive on that but even then she would go back and correct her mistakes!!
And then our favorite--speech therapy. She used mosaic tiles form a variety of shapes, according to very specific instructions. She did well with that. But what was way awesome was she passed the drinking water test!!! Yahoo!! No more thickening her drinks! Later in the evening the therapist called her back on the phone to tell her she could also have ice cream and .... SNOWCONES!! She is really excited to get that SnowOasis lime something or another snowcone! We will have to figure out how to get one up here to her.
Another major change we saw today was in her cognition. Her understanding of what was going on around her and her's quite hard to explain but it was awesome. She engaged well in conversation, was focused on her goals and let that Shannon humor come through many times. For example, after she had passed the fluids test, the speech therapist told her she would need to go down and ask the doctor if he would agree to change orders. So she walked down to his office, opened the door, asked him to make the change and then made her case for why he should agree, citing the comments made by the therapist, her skill at swallowing, and her general desire to move forward. Then she flashed a great smile which sealed the deal. There were ups and downs during the day and like they keep telling us--this is a roller coaster ride. Later in the day when her medication had worn off, the anxieties hit again. That was not fun for her or for us. We got the nurse to get the go ahead to give her the medication for anxieties earlier than prescribed. We are so glad that we did. She had a delightful evening with her YW's president, her husband and Shannon's sister Kate. She had a great time laughing and talking with them because the anxieties were subsiding.

Today we had the chance to meet with a program called, "Rehab Without Walls". Rehab without Walls basically is just that; they do the rehab but not inside a hospital. They come to the home and into the community and whatever else the individual might need. They are currently working with our insurance company to get it approved which will make it easier leaving the hospital before Shannon is where we need her to be.
An assessment was done, during the meeting with the Social Worker from that program. It was interesting to see how well Shannon did in many of the areas. She was asked to count to 40 by 3s starting at 1. She struggled a little but she got it. Then she was asked to count to 40 again ALTERNATING adding 3 and 5. She thought for a minute and then explained how many iterations of that combination it would take to arrive at the number. She had basically determined an algebraic equation to come up with her answer which was much more complicated than the answer sought. It was funny! Then she was asked to count down from 100 by 7s. She got down to about 84 and made a mistake. She went 4 or 5 more steps down and then she said, "oh wait, then that means I made a mistake at 84 and it should have been 86.", then jumped back down to where she was in counting and finished with a breeze! She was pretty amazing! But the assessment also pointed out the areas where we still have challenges. Short term memory, implusivity, problem solving, etc. Hence, Rehab without Walls feels that they can show the insurance company that the services they can provide will deliver the needed benefits. So we hope that happens soon.

One last note. Shannon did amazingly well on her fluid and calorie goals today. She was determined to make sure that today was a day that she would meet and surpass them. The clearance to have milkshakes helped out a lot in both areas. She is calling and placing her own order for her meals and understands that if she tells them to place extra butter on her green beans that this will help her meet her calorie goals. (Wouldn't we all like to have extra butter because it was good for us.) So after a few rough days, today was a pretty great day. Good progress in many areas and greater understanding for how to deal with challenges. We are so appreciative for the continued love and blessings of our Heavenly Father as He guides and strengthens us along unchartered (for us) waters.

Thursday, June 24, 2010

Switch-o, chang-o!!

Today started out very much like yesterday except she did eat a small bowl of Fruit Loops. But no shake and very little fluid. The fluid intake had dropped to a small 16 oz by 1:00 this afternoon. All the doctors and nurses, therapists, specialists, involved were very concerned. At one point in the day, the two rehab doctors came in. Again they were trying to figure out what it could be that would make Shannon's stomach ache so much. After several negative answers to their inquiries that might help, I said, "Shannon is there anything that will make your stomach feel better?" She answered simple "no" which told us a lot.
Her anxieties only worsened through the day--she would fall apart if I left the room for more than 1 minute. Each day she is becoming much more aware of where she is at and what that means. And frankly, all she wants to do is come home because she thinks that will solve all the problems.
So they decided to put into place some very specific goals in each therapy area that they could use to say that when she accomplished them, she could go home. They are in the process of that. But while they were working on that Adam, one of the doctors came in and told Shannon that she could go home in a week if she meet the goals and as he was saying that, I said that she had to be eat and drink the required number of calories and fluids for 3 days and the dr agree with me. But for a while Shan just thought all he said was that she could go home. We have worked through that hopefully but it didn't change anything with her eating and drinking.
Because of the anxieties, the doctors decided to try a very small dose of anti anxiety medication. Shan heard that it could make her more sleepy so I worked things around so she didn't even know she was given the medication around 5:30 pm.
She had continued to do wonderfully well in therapies which was good and that earned her a middle of the week pass. That pass took us to the "angel's"" house with her 3 children. That, along with two of her favorite past YW's leaders, really brightened Shannon's countenance. I believe that with the help of the medication and 3 caring wonderful women, something happened. We returned from the outing and out of the blue Shannon says, "where's my food." We quickly grabbed a bowl and got "honey bunches of oats" and placed them in front of her. She started to eat! We ordered dinner and as soon as it arrived she continued eating. She thought that if she ate dinner it would have enough calories to make the grade for the day. Not so. She didn't even eat the whole meal but she did eat probably close to 400 calories. So she has some struggles yet ahead of her but that was the fastest quickest switch-o, change-o I have every seen. She's like a different girl. Now the prayer is that it will stick and we can move on to see what the next step is to be. She is going to need therapy longer than a week obviously and if she eats the requirements (I do think it will take a bit to work up to the required levels but this is Shannon so there is no telling!), we have to stick to promises and figure a way to continue from home. We are working on that options next! How grateful we are that the Lord is mindful of us and knew just how far we could go before the prayer was answered. I am coming to better understand how the Lord uses trials to strength us.

Wednesday, June 23, 2010

but Instead

Tonight I could write about the ongoing challenge of depression, which is getting better, or about the anxiety attacks that have come on strong or that she still isn't eating much and not meeting the drinking goal but INSTEAD...

I want to tell you of the good things that are happening. We put together a schedule of Shannon's day. Each morning we review it and fill in all the free time slots. This makes it so there is no question of what we are to be doing and deverts the desire (sometimes) to just crawl back in bed after every activity. It really is helping. We also have set up a motivation/reward for Shan. She gets a point for every good therapy session that she has. If she gets 10 points before tomorrow night, she will get a WEEKDAY pass to go visit her "angel" that rescued her last week. She really just wants to go home but this seemed to be a good alternative.
Today we learned that there is still ANOTHER step in the fluids thickeness for Shannon to go through. But she passed today and so now we thicken her fluids 8 oz to 1 packet of thickener. It is hardly different but enough that it still keeps her safe. And it won't be long before they throw all those restrictions out so she will be able to eat/drink anything again. Yeh! her speech therapist is amazing and wonderful and is a great motivator herself for Shan. They worked on using her eyes better, reading and finding pictures within pictures. She did a great job. Her eyes continue to improve and each day she says they are focusing better.
In PT today she was amazing as well. She hasn't felt well with her stomach ache but she still walked down a flight of stairs, across the length of Primary Children's hospital, went outside, across the parking lot entrance to a green patch of grass. There she worked on kicking the ball--eye coordination and trying to walk without the drunk man's walk on the grass. We walked up a small hill and back down, across the lawn, across the parking lot entrance, back into Primarys' to the other end of the building, walked up a flight of stairs and all the way back to her room!! She's still unstable and hangs on to someone's arm but the endurance continues to increase!!
In OT, she worked through a 25 piece puzzle in record time but building those fine motor skills and eye coordination. Then she played "Trutti Fruiti" and "Blink" card games with her therapist and held her own at the number of times she won! They are both sight recognition and speed games. Great work with the OT as well.
The games reminded me of "Teen Night" here. All teens capable in the hospital gather together and play games on Tuesday night. Shannon did not want to go and had an anxiety attack over it until I said I would stay right beside her. She did interact a tiny bit with those she didn't know but mostly she played the game...spinner UNO. And with a little bit of strategy, she won the game. But then she was done. One step at a time....
Because Shannon hasn't been feeling very good they decided to do another CT scan just to be safe. They didn't think they would find anything and they didn't but we have just been trying to try all physical avenues for her not feeling well.
Last, I just wanted to tell you that Shan and I had a neat experience today after we read some comments in the blog. We found and read in her patriarchal blessing that even those who do not know her will be touched by her goodness and the light of Christ. That seemed so pertinent when we read from people that don't even know Shannon and how they are touched by the miracles in her life. Isn't it amazing that God knew that some 4 years ago when she was given that blessing? I guess since we like to identify the miracles, I would have to say that this was another one because as Shannon has continued to struggle, she humbly saw that God has a plan for her.

struggling with depression

Sometimes it is just hard to write on the blog when it isn't all about great success. Yet, I guess without it there is no opposition for us to appreciate those many many days of positive results.
Shannon had such a good day yesterday that we thought we had turned the corner on the depression. No one ever likes to admit to dealing with depression but I asked Shannon if she wanted me to add her sadness to the blog so people could pray for her specific need and she said yes. I can't imagine what it must be like to be out having fun and the next thing you remember is waking up in some hospital not being able to do all the things you used to be able to do and being in pain as well. It is very confusing to her to know that she already knows how to do these things that they are making her do, and yet in doing them, she has difficulty. It doesn't make sense.
If Shannon had had her way today, she would have stayed in bed and slept all day. She wouldn't eat and drank very little. All the docs, nurses and therapists agree that Shannon hasn't been herself for several days-close to a week now. Her headaches are better but she has been having a lot of stomachaches. She had just finished a round of augmentin, an antibiotic that can cause stomach discomfort, we had stopped the stimulant, we stopped the previset which can cause additional stomach issues and discussed any other possibility for physical reasons for Shannon's behaviors. None of them seemed like the whole answer. So we had the neuropsych doctors come and do an evaluation. They definitely believe that she is dealing with depression. They did say that brain injured people do fight with mental health issues more than those without. So that bit of information was added to the whole discussion. In reality we think it was probably a little bit of everything. With Shannon's participation, we decided to go back on the stimulant which helps the antidepressant to work better. We are putting a very detailed schedule together so she has to get up and doing things.We have put some rewards and motivators in place for therapy performance. And then see how things are going in a few days.

One of the things that has been so amazing to me is Shannon's willingness to acknowledge the problem and agree to what it takes to get better. If we ask her if she is depressed, she says yes. She knows what she is dealing with. So at one point today, I picked her up off the bed and put her in the chair and said, "Shannon you know that I am showing you tough love, don't you?" She responded that she did. Then I asked her if she wanted me to stop; she said no. She wants the help to pull her out of the darkness. She would very much just like to go home to her safe confines. I tell you it is very tough when your child cries out, "mommie,please take me home." and you know that you can't and it would not be in her best interest to do so. But still....

Shannon has some amazing adult figures in her life which we have always been grateful for. They can pull Shannon out of the dumps even if it is temporary. They have been up to see Shannon at some of her worse times and made a huge difference in her. They are just all part of God's miracle and His angels.
Quickly i will add one experience that again shows us how mindful the Lord is of us. Shannon was having a really down time and I was getting discouraged. So I text one of these amazing adult individuals that just happens to live only a few blocks away and told her what was happening. She asked if she could come up right then to see Shan. I was hoping that that was what she would say because I didn't have any more ideas to try. I typed a text that simple said, "yes you can". As you know, we don't have great cell coverage in the hospital. But I knew the spot where the phone had to be in order for a text to go through. I was in that spot but the text didn't go through. I had 5 bars showing on my phone. I sent it again. Still it didn't go through. They always went through before in that spot on the second try. Well I tried 3 more times (total of 5) and it wouldn't go through. I began to pray and ask Heavenly Father if there was a reason she shouldn't come now or if it was the adversary stopping things. I couldn't figure it out. I finally text another message saying that I didn't know if she should come up or not. I hit the sent button watching to see if it would go through and it was taking forever. And didn't go through but she came bursting in the room, having run the entire distance to get to the hospital. She felt inspired to bring certain things with her and to just go! She spent the next couple of hours with Shannon and did some amazing things. The Spirit in the room was strong and Shannon began to make the turn around. The Lord sent her because the adversary didn't want her to come make a difference. To me, its yet ANOTHER time that the Lord has expressed His love to me by creating another miracle using one of His angels here on earth! I am so blessed.
And tomorrow will be a better day!

Monday, June 21, 2010

Just another Monday

This entry will give a quick recap of the past couple days. In Saturday's post I mentioned that Shannon had had a rough time for a couple days and that her feeding tube had been pulled back to an NG (stomach) position. Sunday continued to be a difficult day emotionally for Shannon. She is more and more aware of her circumstances and her condition relative to where she was before the accident and it is hard for her. She doesn't see as we do the fabulous progress she has made, especially since she was not awake for a long time following the accident. Her discouragement along with a hospital policy that dictated that the feeding tube be completely removed and a new one inserted into the NG position, led to an extensive discussion with the doctors around mid-day on Sunday. Dr. Such-Neibar, the attending Rehab doctor, made a deal with Shannon that she would take out the feeding tube completely and back off on some of the stimulant medications used to help her in therapy if Shannon would prove that she could take in at least 2000 ml of fluids daily, 1800 calories, and participate well in therapies. If she couldn't meet the nutrition goals in the next couple days, they would have to put the tube back in. So by the time I made it back to the hospital for a "shift change" with Pheobe, the tube was gone!! That accomplishment notwithstanding, Sunday was a sad day for Shannon and she and Pheobe had determined that sometimes you have sad days, but you pick yourself up and move forward the next day. So we concluded the day looking forward to a great day on Monday.
Shannon was more willing to participate in eating and drinking, had a great breakfast and a good lunch. She was more attentive in therapies, but still exhibited a fair amount of fatigue. It seemed to me that her eyesight was better and that her ability to reason things out was improved. But there were still times throughout the day where she was just sad. Jen Call, her Young Women's leader, came and brought a "cardboard Shannon" that had attended Girls Camp last week. Jen told how the girls had taken the cardboard Shannon everywhere they went, hiking, swimming , eating, meetings, everything. Shannon really perked up for the visit by Jen, her girls and Shannon's friend Emily. Late in the afternoon she went to the opthalmology clinic and had her eyes checked out. The Dr. was pleased with her vision, especially in the aftermath of a traumatic brain injury. He still wants to continue in the treatment of her eyes for dryness and wants to evaluate her weekly in the clinic for a while.
One other positive experience happened this evening. The nurse came in shortly before bedtime and asked Shannon if her head hurt. It had been several hours since she had been given Tylenol, and she always says that her head hurts. But this time she said it was fine. Even when she was asked about an hour later, she said her head was still fine and that she didn't want any pain medication. We hope this is a indication of better times ahead for her headaches and pain. At least she is resting peacefully as I write this blog entry. We hope that she can rest well tonight, eat well tomorrow and participate well in her therapies. And we especially hope that Shannon can feel the support of all the love and prayers offered for her. Thank you for caring for her and our family.

Sunday, June 20, 2010

Kate's Blog

This is Kate. I have made a blog on my website and my mom wanted to share my story. I am going to copy and paste my blog post, but if anyone wants to read more or see my website it is, there is a BLOG section, where I just put up my thoughts. Anyway, here is one of my stories.

June 1, 2010

I have heard many times in my Life that Fear and Faith cannot exist in the same place. Just like Good and Evil cannot coincide together. I had an experience today that I wanted to share.

Ever since Shannon’s Accident I have had some major Trauma related issues. They are completely normal for individuals who have been through or seen a traumatic experience just as I did with Shan’s accident. The other day it hit me strong. I started to see images, and my body started to get shaky and anxious. I felt similar to the moments during the accident. This is different then just “remembering” for people who have experienced trauma. These visions and experiences feel as if you are re-living the event over and over. In these instances the brain does not know the difference between reality and a memory.

Anyway, I had a sudden feeling of anxiety and the images that have haunted me started flashing in front of me. I lost all ability to think rationally and I started to feel like I needed to scream or cry. In that moment I heard my mom’s voice, a conversation we have had many times before, saying “fear and faith cannot dwell in your heart at the same time.” The overwhelming anxiety started to become too much for me. So in the moment, I simply closed my eyes and started to pray.

“Dear Father in Heaven,

I know that you can hear me. I know that you are aware of me and the situation I am in. I need help. These thoughts and images and feelings are too much for me to handle right now. I know I need to learn from them, but I also need to feel some peace and understanding. God, at this moment I need peace to overcome the feelings of fear in my heart. I need to feel comforted at this moment and know that you are in control. I need to feel peace.”

I pleaded with my Father in Heaven for a few moments, not caring that I was in this crowded place. There have been so many prayers answered in my sisters behalf, but today, it was my prayer that needed to be answered. I immediately understood that God was taking care of me. He was there when Shannon had her accident. He held her and also carried me. I think of the poem “Footprints in the Sand” and in that moment it became very clear that I was being Carried by my Savior. I knew I could not do this alone. I know that Shannon cannot do this alone.

I know that God is aware of me and knows what I am going through. After my prayer, I did feel a sense of peace and some understanding. Although I am not to the point where I can understand WHY this has happened, I do know that God knows what we are all going through. He has picked us all up and carried us when we cannot walk. His arms are extended.

I want to be able to take the time to recognize these miracles in my life. I have seen Shannon conquer many things that Doctors never thought she could do. I know that is a miracle. As my mom says “A Miracle does not mean Instant” As I have thought about that I have come up with my own thoughts about Miracles. The miracles in life are really the blessings that we have. We need to recognize our blessings and miracles. We have them everyday, but if we expect mountains to move before we notice we will miss out on all the miracles in our lives. We also need to be thankful for those miracles and make sure we share our thanks, not only with God but also with others. Sharing our experiences help others gain their faith. So this is my prayer.....I pray that I will learn from myself and remember these moments of peace and small miracles in my own life. It is time to be grateful and joyous for what we have, because God has His hand in all!

Saturday, June 19, 2010

More of the same

As Pheobe mentioned, Shannon has had a rough time the past few days. That seems to have continued today. Kate spent the night with her last night and all day today. We had hoped that since Shannon and Kate have such a great time together that Shannon might perk up with her sister being there. She only had morning therapies since it was Saturday and she struggled through them. The attending rehab doctor came by around noon and decided to send Shannon down for a CT Scan just to make sure that we weren't missing anything. She also had her tube pulled back to an NG, meaning that it is now in the stomach instead of the intestines. I had a chance to speak with the doctor who felt like Shannon was just not bouncing back from her bone replacement surgery as quickly as we would like. She reminded us that the size of the area of bone removed was so large with Shannon that it was like having two bone flaps replaced. And Pheobe reminded us that in addition to that the surgeon had repaired the fractured sinus cavity during the surgery as well. I recalled a conversation with Nephi Moon where he said that the most difficult part of his recovery was the days following his bone replacement surgery--his head just hurt all the time.
Shannon did perk up a little more in the afternoon, enough that we decided to go on another excursion. Tonya made it home from Girls' Camp and so Pheobe, Tonya and I went to the hospital late in the afternoon with the intent that we would take
Shannon and Kate on a picnic for her outing and celebrate Father's Day in the process. Shannon wanted to go to Wendy's so we thought we would go and get something from there and then head over to a park to eat and enjoy some cake that Pheobe had made. Things went Ok at the start but Shannon quickly got tired--probably was over-stimulated from all of the noise and activity. She didn't want to go to the park and so we tried to just eat there. I ended up taking Shannon out to the car to get her out of the hubbub while the rest finished their dinner. Then we went straight back to the hospital at Shannon's request. We had cake there, and then Shannon wanted me to give her another blessing--both for health and also for encouragement. So you can tell that she is at the point where she is very aware of where she is and what has happened to her. She has a difficult time realizing how much progress she has made--she just sees what she is currently capable of and compares it to what she remembers she was able to do before, and it is discouraging. Pheobe and Kate cried during the blessing I gave, and Shannon immediately told them she was sorry for making them cry. She is such a sweet kid. We just need to keep reinforcing to her that she is amazing and that her progress is incredible. Our current prayers are focused on helping her feel a peace and satisfaction for the marvelous things she has done, and retain a hope for greater things yet to come. We know they will, it is the patience required in the here and now that presents a challenge for all of us. Thank you for your continued support of us and Shannon. We look forward to a restful Sunday in preparation for a week that will get Shannon's progress back on the path that we would like it to be.

Not all days are good days....

It's always easier to write a blog entry when all we have to tell about are miraculous changes or progress. Today is not one of those days. We know, understand and accept that there are good days and bad days. We know that there are challenges ahead that will be very difficult to deal with and we know that only the Lord will have all the answers. We just need to stay focused, ask and then listen.

Yesterday Shannon seemed extra tired. She started being a bit more defiant when we wanted her to eat. Then this morning (well at this time of night I guess it was yesterday morning) she just did not want to wake up, telling me she was still so tired. Before it had helped to get her showered so we headed to the shower. She was awake and somewhat perky in the shower. Right after, we went straight to OT. She worked maybe 10 minutes before she just put her head down and said she was too tired. Generally, even though she doesn't want to work, we can convince to make it through the session--not today. We went back to her room and she slept--soundly. The doctors had a blood test done and found that she was at 22--normal is 30 and 18 is not good at all! So it could have been part of the problem. After discussing what was going on the decision was made to give her a couple of units of blood. That took up the majority of the day and we still aren't seeing the consistent perky Shannon we have been used to. We talked with Aaron (our doctor son :))and walked through the situation. We thought that perhaps the medications that they had been given her were possibly causing her to be so tired and sleepy. It could be, but since Thursday mid day she hadn't had any Lortab or Toradol, only some Tylenol and one dose of Motrin before bed. It is true that it takes a long time for some drugs to get out of Shannon's system. So perhaps that is still part of the issue. And the third possible reason for the tiredness may be sadness. Shannon is becoming ever more aware of her situation and what it really means. Her short hair has never really bothered her until today. Because she has been so tired, we have had a very difficult time getting her to eat much--not just because she is tired but because she refuses. She still drinks well but not as much and most foods, she just won't even try. So the big question is, is the problem low blood, medication, sadness or a combination of all 3. I think I would have to say a combination.
Shannon has had a few visitors and she generally perks up well for them. It has been good for her. We do schedule visitors because she can not have too many and they can't stay for very long. Whenever someone leaves, they are so amazed at how good Shannon looks and how well she does interact with them. We see her every day and so don't realize what others may think of Shannon's current condition. She looks good, she knows people and she can carry on a conversation very well. We do know that when people leave, they feel uplifted and inspired because of what they have experienced with Shannon. We do know that family and friends are important to her. We have read and reread every letter, card, poster, email, blog comment that we have received for her numerous times. She loves to hear from others.
I must say though the clouds are not all dark. Shannon did eat for the speech therapist today and passed into another level of foods. She is now at the advanced mechanical soft foods. Wow, does that open up the options for her! She ate french fries today and pieces of chicken nuggets. She only ate 1/2 her fries and maybe 1/8 of the nuggets but she was thrilled to have them when she started eating! I hope the variety will help to improve her appetite. I spent 30 minutes or so with the dietitian today learning ways to boost the calories in the things that Shan does eat. It's going to take more time than we wanted before the feeding tube comes out but patience is a virtue that we are working on here! :)
We know things are going to be tough on Shan emotionally and ask that you would pray for her to receive the divine help that will sustain her.

Thursday, June 17, 2010

Did I say change?

Ok, so I'd like to just say that I was overly optimistic but in reality what it is, is that we have more than one doctor involved in the decision making process. They really don't want to rush to take the tube out because then if they need it, they don't have it and have to reinsert it. :( The plan was still to pull the tube to an NG but when the nurse told me it was policy to pull the NJ completely and then put in a whole new tube for the NG, I began questioning that. Shan's throat is already sore having the tube in and to go through the process of inserting another can't be too pleasant. So the nurse didn't get around to doing it and then we had speech therapy. Our speech therapist is awesome and her opinion holds a lot of weight with the doctors. She is the one that deals with the swallow studies, what type of diet Shan can have and all that kind of stuff. So I asked her about the NJ change, (she thought it had been done a few days ago) and that they would have to pull it and replace a new one. We also talked about how much fluid and calories Shannon really needs in order to not take feedings through the tube. After she left, she did some investigating; came back shortly and said that the doc would be in but that they had decided not to pull the NJ but to stop all feedings and see how Shannon does. She has to do 3 things consistently -- probably that 2-4 days scenario--before they will take out the tube. That means they would totally skip the NG part. Those 3 things are: 1) Drink 80 oz of fluids, 2) Eat 1800 calories and 3) be able to swallow pills.
So that sweet speech therapist went and bought some M&Ms, came back and gave Shannon 3 trial tests to see if she could swallow an M&M. (I couldn't do it because I would want to eat the M&M!) But knowing the purpose, Shannon swallowed 1, 2, 3 M&Ms in a row without a bit of hesitation! The therapist needless to say was estatic! So then the doc came in and was super pleased! Then the 3 of us talked and decided that we would follow the last above plan of turning it all over to Shannon. Well, of the 3 things she has to do, the swallowing of pills is checked off, and drinking the 80 oz for her has been very easy especially since they count the smoothies that she drinks. BUT the calories are going to be the problem. She just doesn't like to eat. I am sure it has a lot to do with the tube in her throat and then just being tired. But when she says she's done eating, she means it!! So I am meeting with the dietitian tomorrow to find out where to count the calories and how to increase the caloric intake. The fluids are easy to track but the calories, not so much.
Shannon has still been on her pain medications that make her very tired so therapies have been a challenge to get started. Nonetheless, once started she will do what the therapists ask her to do--although she doesn't have much choice! All I can say is that they really know how to use tough love in therapy here.
The eye doctor was in. Her eyes continue to improve. They seem to be focusing better all the time and they certainly are working together better. There is still a ways to go but we continue to see progress which is amazing!
Being here every day, we don't think about the things that others would want to know. For example, no, they did not shave Shannon's head completely as we had thought when she had her surgery. Instead she has an inch wide strip that follows the previous scar. The rest of her hair is now at least 1/2" long. Today, her swelling had dropped even lower in her face so she really looked like she had just had all her wisdom teeth pulled. But as the day has gone on, that swelling continues to decrease more and more. Shannon can carry on a very lively conversation with people as well. For the most part, she is always upbeat and happy. Her Bishop today, when he visited said, "she is just so pure". I think meaning that she is just totally honest and forthright in her feelings and then there is just a spirit about her that others sense when they are around her. What a blessing she is to us as her parents.
I wish I could be more concise in my writing so I could tell you more of the cool things that happen every day but I figure if the entries are too long, you won't want to read them and besides that, I am doing it late at night and sometimes I am tired enough to need to retype the easiest sentences repeatedly! I will try and shorten the rest up...
Again today we had yet another who said that they can't believe that Shannon is alive. Today it was from the therapist who said she couldn't believe the progess Shannon has made with the type of injury she had. She said others with this type of injury don't show anything close to the progress Shan is making. Another testament to the reality that we are watching a miracle happen.
I have said before that there are many many smaller miracles happening that we are told about because of Shannon's situation. There are 2 I would like to record tonight. (I am trying hard to record all these little miracles in a book for Shannon but I just don't seem to stay on top of it.) The first one, I really should have recognized sooner but didn't until I was talking with my friend today. Tonya, Shannon's sister that is 18 and has disabilities is really the only one at home during all of this. Before the accident she had always been very dependent on me with sometimes, needing several phone calls a day. When people would ask how things were going, Tonya was always a major concern. She and Shan are very close so I knew I had to be prepared for some challenging times as all of this started to happen. But in talking with my friend, I recognized another miracle. Tonya has done very well without me there, her anxiety levels have been kept low, we have the most excellent helpers for her right now, she is content and really quite happy. She misses Shannon but she is having fun with her "workers" and has no time to get bored! If you know Tonya and her situation, that's pretty hard to believe...unless you believe in miracles!
2nd one--this one is so similar to several others that we have been told. The far reaching effects that Shannon is having on others is amazing. My niece told her boss about Shannon and her boss, who has no idea who Shannon is except she is my niece's cousin, has been following the blog and is witnessing this miracle with us and is praying for Shan. Perhaps that isn't considered a miracle but to me, anytime someone becomes concerned for someone else that they don't even know, it demonstrates the same characteristics of our Savior, Jesus Christ. In today's hectic busy crazy world, too few people find the time to reach outside of their own little circles. When they do, people experience things that only come because of the Spirit--to me, that's a miracle.
If Shannon's experience has brought about a miracle in your life or someone you know, we would love to hear about it. There will come a time when Shannon will totally comprehend what has happened, and for her to remember what she has learned while in this process, reading about those miracles will make a big difference in her life. Pheobe
How fast things can change! Udell left from the hospital early this morning so I got up early at home and drove in. I got here about 6:30 am. The docs had already made rounds but were standing in the hall. They asked for my report (which Udell could have done better with because he spent the afternoon with her)which I gave what I knew. She asked if I thought Shannon was up to having the NJ tube changed to an NG tube. I couldn't see why not...course, I still don't understand all their rationale on why the tube goes where it is even though they have told me numerous times. So for those of us that aren't medically adept, for the record, an NJ tube goes in through the nose, through the stomach and into the small intestines. It is placed with the use of xray. The NG tube is placed in through the nose but goes only into the stomach and does not need xray to determine if it is correctly placed. (I guess they can hear by the sounds in the stomach to know if it is where it needs to be.) With an NJ there is less chance of reflux and stomach upset but the hunger pains are still there. NG is considered not as intrusive and going from an NJ to an NG is a big improvement. But that isn't enough for Shannon! Generally when they pull the NJ to an NG, they start with continuous feeds--the feeding tube runs continuously to be sure the patient can tolerate food in the stomach. After a day or so of that, if all goes well, they begin to do feeds only at the same times you would have breakfast, lunch and dinner. After that, if the patient is taking in enough fluids and enough calories, they pull the tube. Well, for Shan the doc skipped the continuous feed completely and decided to only give her feeds in the tubes if she didn't make her fluid or calorie intake. She certainly, even though it has only been 3 days after major surgery,is taking in enough calories and fluids at this point. When the doc saw how many calories she had yesterday, she talked about getting rid of the tube in the next day or so. The IV will go most likely today and then.....within a day or three (not to be too optimistic) hopefully we will lose the feeding tube--the last one! With all she has been through, it is so miraculous to see this progress.
As I sit here, some of Shannon's music is playing. The song is called "When Someone Cares" and the chorus says, "With God, nothing is impossible, if you just reach and take His Hand." I think that as we have all reached out our hands to God in prayer, we are seeing that "with God, NOTHING IS impossible." Pheobe

Wednesday, June 16, 2010

Five Weeks

Today marks five weeks since Shannon's accident. It has truly been an amazing journey. Pheobe mentioned last night that Shannon's head and face were swelling quite a bit in the aftermath of the surgery to replace the bones in her skull. That swelling continued through the morning today to the point where she could barely open her eyes. She rested most of the morning and her appointment in the Ophthalmology Clinic was postponed. I should mention for purposes of clarification that the swelling we are talking about is different than the brain swelling that occurred five weeks ago. That swelling that we were monitoring so closely was causing inter cranial pressure (you may recall the discussion of making it past the 72-96 hour mark of maximum swelling). This swelling is in her face and skin, not in her brain. She had this before as well and I am not sure why I was not expecting it following this surgery. They essentially made the same incision as before, and they moved the scalp around like they did before, so I should have expected that the skin swelling should have been similar.
At any rate, the swelling started to abate as afternoon came. The neurosurgery nurse practitioner came by in the early afternoon and removed the drain tube that had been placed between the skin and the skull during surgery. It had drawn out any blood and fluid from the incision. The flow from that drain had essentially stopped and was no longer needed. So she has one less tube. After that Shannon pointed out to me that she was back down to only two things, her IV and the feeding tube.
The other thing that has been bothering her has been headaches. They have decided for a while to just manage the pain with regular doses of pain medication. That along with the ice packs that she likes to arrange around her head have helped to keep the headaches more under control. This afternoon she got back into the therapy mode with her normal schedule of physical, occupational and speech therapies. She wasn't too excited about it, but she did well. Following her last therapy of the afternoon, Shannon and I made a trip over to the PICU. We stopped at the office where Jaime, her main PICU nurse and new friend was working, and then she took us around to introduce Shannon to many of the people who had worked with her when she was so sick. The people in the PICU see the patients at their very worst. By the time the patient starts to improve, they are transferred to another unit. So it means a lot for them to see people come back when they are doing so much better. It was touching to see tears well up in the eyes of these nurses as they had a chance to meet the real Shannon and have a chance to talk with her. Shannon still has a difficult time understanding how so many people (both here at the hospital and following her on the blog), some of which she doesn't even know, can care so much about her and have so much concern for her. We are all overwhelmed at the continued outpouring of love and support that we feel each and every day. Thank you all so much.
Tomorrow has more great things in store as changes and improvements are anticipated for her schedule, nutrition and therapies. We'll let you know about those as they unfold. Above all we are so grateful for the way that Heavenly Father continues to send his comfort and blessings. We stand in awe of His goodness and mercy! Udell

Tuesday, June 15, 2010

Small soccer ball

The day after surgery is never fun and they say that the 3rd day is always the worst. That is not a good scenario! Poor Shannon. I returned at about 3:30 today and I could tell that Shannon had swollen quite a bit. It reminded me a lot about the first time I saw her after the accident. The swelling continued throughout the afternoon. Tonight her poor eyes are swollen shut. Her cheeks look like Chipmunks. Her head is about the size of a small soccer ball! She has had a lot of pain as would be expected. But tomorrow will be a better day! Pheobe

Back To Rehab

Shannon wanted to make a quick post to the blog to let everyone know she was out of the PICU and back into Rehab. Last night went pretty good, but she didn't get as much sleep as normal because the baby in the next room cried a lot during the night. Her CT scan went well and showed good results from the surgery so the neurosurgeon team released he back to Rehab. She had to wait for about 2 hours before that could really be done and she used the time to take a much needed nap.
We read the blog comments and Shannon wanted to clarify for everyone that her head is indeed on straight and that she is finished with her helmet. She loves to read the blog posts and the comments. And she thanks you all for your prayers and your fasting for her. That all for now or in Shannon's words, "That much is good!"

Monday, June 14, 2010

Another Significant Milestone

Shannon wants me to tell you all that she has her head screwed back on now!! That's right, she underwent surgery this afternoon and had the portions of her skull put back in that were removed when she had her surgery 4 1/2 weeks ago. She went into the operating room at about 1:30 in the afternoon. She was excited for this event and was not at all anxious about it. She bade Pheobe and me a cheery good-bye as the anesthesiologist wheeled her into the operating room, and we headed for the waiting room. By about 2:15 we got an update from the operating room that she was stable and doing well under the anesthesia. At around 4:00 Dr. Siddiqi, a Plastic Surgeon came and explained the procedure he had done during the surgery when a fracture in a sinus cavity in the forehead part of the skull was discovered. The neurosurgeons had mentioned that they would be examining and cleaning out these areas of the skull prior to replacing the bones. The fact that there was a fracture was not a big problem, they just wanted to make sure that her brain was protected against infections in the future that could migrate from the nasal passages into that sinus cavity and into the brain. His procedure sealed off that cavity so that such a problem would not occur. As he was finishing his explanation, Dr. Walker came in and gave us a report on the bone replacement. He said that things had gone perfectly and that the bones fit back together really well. for the record, there were a total of three sections that needed to be replaced, two large ones and one medium sized one. He was really pleased with how well things had gone. They still needed to close the incision, which was the same incision made previously which had taken 68 staples to close. But this time the plastic surgeon was doing the closing and used sutures instead of staples. It took quite a while to get everything completed so she didn't get out of the OR until about 5:00 or 5:30. She went straight to the Pediatric ICU unit, where she will spend the night under observation. Baring any complications, she will head back to the Rehab unit tomorrow.
This was an interesting day for me. Since we were in many of the same places I had been during the evening of May 12th, it was natural to think back on the events of that day and compare and contrast them to this day. Some of the same feelings of trepidation were there since Shannon was going through major surgery. It was a little like Deja Vu, sitting in the same waiting room, anxiously awaiting word from the same doctor regarding the outcome of the surgery and how Shannon had fared. I have to admit, I was calmer today than I was then, but a familiar Spirit of peace was present. I had an opportunity to give Shannon a priesthood blessing today prior to the surgery, much as I had done before and feel that assurance that comes from Heavenly Father. Once the surgery was complete, we went back to the ICU, in fact to the room right next to the one she had come to before. I was reminded again of those tense hours of waiting and was grateful that she was already responding by the time we were allowed into the room. That was perhaps the most stark contrast of all and reminded me again of just how far Shannon has come and the miraculous recovery she has made. Some of the doctors and nurses who are here tonight knew her when she was here before. And they are amazed how how great she looks and how much progress she has made.
All in all, it has been a great day. We are so grateful for the wonderful skills of outstanding doctors and nurses who do incredible things. We are grateful for their families who sacrifice so much so that they are in a position to be able to do those incredible things. We are grateful for Shannon's drive and determination to beat the odds and come out on top. We are grateful to you for your continued faith and support. And we are eternally grateful to the Savior for His love and kindness. It is a great day.

Sunday, June 13, 2010

Little Unknown Tender Mercies

Sunday evening; all is quiet. It's been a beautiful day of rest. Shannon went with me to the Sacrament meeting held here at Primary's. It was a very nice meeting and I think Shan enjoyed it. She was just anxious to get back to her bed for a Sunday nap!

I began compiling the list of all the things that people have done for us during the last month. There are so many that even after spending a good part of the day working on it, I still am not done. It is so hard to believe there are so many people who care about us. We are so grateful for each little thing from a card, to a phone call, a visit, a loaf of bread, fruit, popcorn, snacks of all kinds, yard work, etc. The list is so long....

Some of our very dear friends live here in Salt Lake, not far from the hospital. It was Joel who I called to assist Rob Wellman in a blessing for Shannon when she gave us a scare last Tuesday from a severe headache. I recorded that here on the blog last Tuesday. I was talking with Brittany, Joel's wife, yesterday and she told me of another little miracle that has made our lives less stressful and we didn't even know it. Below is her story:

Miracle of the Cell Swap
Joel and I have 2 cells phones that are exactly the same and we only have one charger for the 2 of them. Usually at night we place Joel's to be charged for the night so that in the morning it will be ready to go for him at work/school. That morning I had put mine in the charger and had unknowingly kept his phone, so on his way out the door he grabbed the phone off the charger. That day - unknown to us but known to our Heavenly Father, Joel had my phone. Pheobe called looking for a worthy priesthood holder to assist in giving Shannon a blessing on a difficult day, hoping to get a hold of me to see if Joel could come help. My phone rang and Joel answered. Within 30 minutes he joined another brother in giving a blessing. What a testimony to me that God knows what we need - here he swapped our cell phones to ease the worries of Pheobe just a bit quicker than we could have.

Oh how grateful I am for the tender mercies that without someone telling us, we would never know about. I wonder how many there are that we are so unaware of.....

What a Difference a Month Makes

A month ago today our world was turned upside down when Shannon was involved in a terrible accident, followed by paramedic transport to the Emergency Room in Provo and then the Life Flight ride to Primary Children's Medical Center. Her survival was very much in question and emergency brain surgery was performed. Then the long, agonizing hours of waiting began as she underwent very aggressive treatment to control the swelling and pressures in her brain. Countless prayers were offered, priesthood blessings were given, faith was exercised and the miraculous blessings of the Lord were extended to her. Comfort and peace came to us and to you and we have been strengthened and supported in every way imaginable. We have been eye witnesses to the power and glory of God and are so grateful for His tender mercies.
Today was another wonderful day. Kate came up early in the morning and was there for Shannon's three straight hours of therapy. (The therapist only do morning sessions on Saturday so they pack things in.) She did really well the whole time--amazing. She is continuing to improve in areas of speech, comprehension, physical endurance, problem solving and awareness. It seems that the biggest hindrance to her progress right now is blurry vision which makes it difficult for her to read, write and focus on details in some of the therapy exercises that she is involved in. After she goes through her surgery on Monday, the eye doctors want her to make a trip to their clinic so they can really check out her eyes and see what is going on. They have come by her room periodically, but have some limitations of what they can examine with the equipment at her bedside. After her therapies, she was ready for a nap. At about 1pm Kate and I got to take Shannon on a field trip away from the hospital. After a month here, she was ready for the adventure. We went cruising around Salt Lake for a bit and Shannon expressed a desire for a treat--a Krispy Kreme donut. So we found a store that had some and took her in where she could see what kinds were there and make a selection. We then went over to the drinks and she decided that some strawberry milk sounded like a good companion to her donut. She was rather conspicuous with her helmet on and a disconnected feeding tube, but she engaged the people in conversation and even posed for a picture so that the trip could be documented. We then drove over to Sugarhouse Park to enjoy the treat. It was cold enough that we just ate in the car, and Shannon joked that she was dropping icing chunks in the back of her daddy's car. After about an hour or hour and a half, we made our way back to the hospital. Shannon thought the outing was pretty cool and really enjoyed the break. I left her with Kate and the two of them "hung out" together for the rest of the day, until Pheobe headed back to the hospital this evening to begin the Sunday shift.
A lot has happened in the past month. We are amazed and grateful for the progress Shannon has made during that time--from being on the verge of death to pursuing a quest for Krispy Kreme donuts. Our hearts are filled with gratitude for the many blessings that we and she have received. We pray that her surgery will go well on Monday, that her eyes will continue to improve and that her overall recovery will maintain an onward course. Thank you for taking this journey with us, for extending your love and faith and joying in the success. We look forward to the blessings and progress this next month will bring. Udell

Friday, June 11, 2010

Full Speed Ahead

The big news for today is that Shannon had the MRI she needed to see if she was ready for the bone replacement surgery on Monday. The MRI showed that the swelling in her brain had diminished enough to allow her to proceed with the surgery on Monday at noon. Shannon is thrilled with the prospect of being able to ditch the helmet that she wears for protection whenever she is out of bed. One of the neuro-surgery docs showed Shannon and me a bunch of the scans, including the ones right after the accident and the ones from today. It was interesting to look at the side view from today and see where the bone is missing and how it would fit into place. So much of this whole process is mind boggling to me. I am amazed at the skill and knowledge of so many of the professionals that work with Shannon. It makes me even more in awe of the greatness of Heavenly Father's knowledge and mercy.
Shannon lacked a little energy in her therapy sessions in the morning due to the fact that she hadn't had anything to eat or drink since the previous evening so she could be sedated for the MRI. Even at that she did really well. She really surprised the OT with her skill in playing a memory game. After the MRI she slept for a while as the sedative was wearing off, but woke to participate with a music therapist. She enjoyed listening to and singing with this lady as she shared her talents with Shannon. After that, it was on to the afternoon sessions of therapy. Again she did really well. The Speech Therapist gets a kick out of Shannon's responsiveness to her cues to look her in the eye and use voice inflections when she talks. In PT she was particularly adept at basketball--she shot a higher percentage than either the Celtics or the Lakers.
Every day brings additional progress as Shannon marches forward to recovery. We are ever grateful for the blessings that come each day and love to see her fun personality bring joy to those around her. Thank you all for your love and support.

Thursday, June 10, 2010

Thursday Comes to a Close

I called Pheobe as I was getting ready to head home from California. Shannon heard that her Mom was talking to her Dad and wanted the phone. I heard a cheery, "Hello Daddy. When are you coming back?" She carried on a great conversation with me for a few minutes as we chatted about all kinds of things. It was pretty cool!!
When Pheobe posted an update earlier today, she indicated that Shannon was headed for another swallow study. She did pretty well with that--passed the next level and came close to passing the one after that. What happens during those studies is that they have her swallow different textures and consistencies of food and liquid. They monitor how well she handles each consistency like pudding, honey, nectar, and water. So today she was almost cleared through the nectar consistency, but not quite. Shannon still has work to do in order to be able to get things working in her throat so that she doesn't have as much risk for getting things down her windpipe when she swallows. However, she has made good progress since the last study. She is doing really well with eating and drinking. She needs to be able to get enough calories and liquids through regular meals and snacks so that she doesn't need extra through the feeding tube. That is our goal.
Tomorrow has more significant events in store. She is scheduled for an MRI to make sure she is ready for the bone replacement surgery on Monday. (Shannon talks a lot about how they are going to "take the top of her head off" so that they can replace her skull.) Along with that we have a full schedule of therapies scheduled.
It is amazing to see how much progress she has made during the past three days that I have been gone. She is incredible. I am constantly touched by the kindness of so many people. So many of my co-workers in San Francisco and Colorado express their love and concern for our family and Shannon in particular. Many of them have never even met her but are so willing to give of themselves, offer prayers in her behalf and exercise their faith to bring about the healing and progress we are experiencing. Words cannot express our gratitude to them and to all of you for your heart-felt love and support. We are especially grateful to our loving Heavenly Father for the many blessings he continues to shower on Shannon and us and on you. I am excited to be back and see what tomorrow brings.

Wow! Swallow study today!

Holy Cow!! Things can change fast in Shannon's world. It is quite the yo yo ride!! In order to get the tube out, Shannon has to drink about 2 liters of liquid a day and eat enough calories. Well, folks with brain injuries are always very thirsty and willing to drink. Shan woke with a dry throat so we got started on a jelled apple juice. 8:00 am Breakfast came and she ate 1/2 her french toast and pears and drank about 16 oz. The speech therapist was supposed to be here to test her with nectar thickness. But she had forgotten and double books. So the therapist came at 9 and gave her another 8 oz, nectar style and was so pleased and excited that she asked if we wanted to get another swallow study done. If she passes, the restrictions will be limited to what she can tolerate. She still wears out with chewing, in fact, with her first bite this morning she said her mouth and jaws hurt! She worked those muscles yesterday! But she plugged away and ate about 1/2 the french toast. So the therapist called to see if they could squeeze Shannon's study in and sure enough, today at 12:20! So then the therapist decided to try Shannon on pure water. Shannon was super excited and although she was told to take only one swallow, she gulped 2 and began to aspirate. :( But like the rest of us, she coughed it up and up until she threw up and up and up! Poor kid. We had really just given her too much to drink in too short a period of time. So I thought for sure they would cancel the swallow study but when I asked, the therapist just said, "oh no, let's see where she really is at." So that's coming up here in the next little while. The therapist wanted her to get as much rest as possible between now and the test so we are working on that at the moment. She will have to eat a bunch of different foods and drink the yukky barium stuff so they can see what is happening as she swallows. Hopefully that will go well.
Shan did get in the few minutes she had in OT. This time she got to play boggle. That was really tough for her but with little helps, she did ok. PT worked her hard but only for 30 minutes. They traded out her big comforty tiltable wheelchair for a regular wheelchair and she didn't like that. The other one is more comfortable and she doesn't have to work as hard. But progress will be progress! And we are thrilled for it. Shannon obviously wants it too but sometimes gives us a pouting face to let us know she doesn't like it! She certainly has every right to pout when she wants considering she goes ahead and does the work. She is so awesome!'
I tell you, everyone talks about how fast Shannon is progressing. I believe it is all part of the miracle! I believe it is for all of us as we watch, to know that miracles can happen every day. This kind of progress doesn't happen every day!! And miracles strengthen our faith just like trials and challenges do. I will get back later to tell you how the study goes! :)

Rehab!! And the Miracles continue!

Yeh!! They made the change! We are now officially in Rehab! And what a difference it has made. All of a sudden, decisions were made and orders written and things cleared up! It's been so helpful!
Lots of good progress today; each therapy session got better. Shannon worked for nearly an hour in PT today! Leg lifts with weights, climbing stairs, cross pattern crawling, playing her favorite game, Bop! (not!!), and walking up and down the halls. Good hard work!
OT was great as well. Her writing skills improved dramatically. The challenge is getting the eyes to work where they are suppose to and being able to focus on what Shan needs to look at. She did another puzzle--25 piece this time. And we played a game of Uno which she decided she didn't like because she didn't win! :)
Speech was incredible. Her eating skills have really improved--so much that she will be tested by the speech therapist tomorrow to see if she is ready to handle the next step up--the nectar thickness diet. That will open more possibilities to what she can eat. They have turned down her feeds to where she only gets them at night and it is only 750 calories with additional fluid as needed according to what she has taken in during the day. This should make her eat more during the day. Once she meets all the necessary calories and fluid intake requirements, she will lose that feeding tube! The last one! We are excited for that but know that it can still be a while. The therapists talk about weeks, we think about days!
Today Shannon had pancakes for breakfast--not pureed. She really enjoyed them. This afternoon it was ground hamburger with mashed potatoes and gravy, and this evening it was ravioli. She did not like the ground hamburger at all. So a couple of bites and that was it. They told us that chewing would take a lot of energy and be very tiring for Shannon. I thought that seemed strange but I have witnessed that today. I guess when you haven't chewed anything for a month, your mouth really does need time to get its strength back to do its job. It was so interesting watching her facial expressions and seeing how tired she was getting. We are grateful that she is so willing to keep at it and do the best she can. She met her fluid intake (thickened) for the day. I am so pleased and proud of how well Shannon is doing.
Shannon is still having headaches. We are not sure how much of it is related to the itchy-ness of her scalp where the scars are still healing or what makes her so uncomfortable. We continue to give her tylenol and occasionally Motrin. She loves to have ice packs on her head, they seem to help with the pain. Even at that, she is pleasant and fun to be around!
How grateful we are to see the miracle continuing!!

Tuesday, June 8, 2010

surgery is coming!

I said there was much to report on and I can't even remember it all. But this is a rather important bit of information that some may want to know. One of the doctors who came in this morning was Dr. Walker, the surgeon who put Shannon back together. He came in at the request of those trying to plan what is next for Shannon. He looked her over and said, "I think we can do surgery next week." And Shannon piped up and said, "You can't do it sooner than that?" It really caught him off guard and he chuckled saying he was going to be out of town until next week but although he didn't usual do surgery on Monday, he would set it up for Monday. So the tentative schedule is that next Monday Shannon will have the surgery to replace the bone in her head. Friday they will do an MRI and I think a CT scan and if all is clear, she soon will not have to wear the helmet she so despises!

Time for faith to grow!

Yesterday there wasn't much to report other than good progress. Today I have a number of things to share.
First, the OT came in at 8:30 and had Shannon dress herself completely. It wasn't very challenging for Shannon because she has been doing most of it herself anyway for some time. Then breakfast and the speech therapist came in. Shannon did so well that the therapist wanted to try Shannon on the next level of food--the mechanical diet. This is where she gets real food that she has to chew but it still needs to be soft. The therapist told me that the chewing process would be very tiring for Shan and so we don't want too much too fast. She can have one regular food item per meal but the rest needs to be pureed for a while yet. The therapist was talking about the plan and said something like, "maybe we can get the tube out of your nose next week or the week after". Shannon replied, "how about Monday?!" The therapist chuckled but I thought, "I wouldn't be surprised." She was so pleased with the progress Shannon has made since she saw her last Friday and kept saying how loud her voice had gotten! She was indeed really pleased. They also moved her up to 3 meals a day, snacks and drinks (thickened). They have cut her feeds way back so she will be hungrier at meal times. Major good news!
One of the challenges we face is that the therapist or the rehab doc will decide we should change something but they have to wait until the trauma docs approves their suggestions before we can start on things. It can get rather confusing. In fact, at this moment I don't know if they have the new orders for the feeding tube because it is going right now. It is generally something that is very smooth--transition from trauma to rehab but insurance is involved so I guess this time it has been much more time consuming than they are used to. Oh will happen soon enough. The only real difference we should see is that the trauma docs and nurses won't be around and the rehab folks will be totally in charge. (The rehab folks of course, want things a little different--now we will have some real goals in place!)
We continue to see miracles happen with Shannon and today was no exception. The day started out pretty normal but during therapy, several different doctors came in for their rounds at the same time and so there was discussion about several different things going on a once. Quite exhausting for me let alone Shannon, I must say. Then she finished therapy with the breakfast we already mentioned. PT had her scheduled later in the day which was probably good because Shannon was so tired after the morning's activities she wouldn't have done well. She had been complaining of a headache which hasn't been unusual for the past several days. So they gave her motrin and she went to sleep. An hour later when it was time for PT, she did not want to wake up! We were pretty insistent and soon had her in the PT room. She continued to act much more tired than usual. She wouldn't keep her eyes open...she just wasn't herself. She did a set of stairs and then started a crawl pattern and finally just laid down on the floor saying she couldn't do more. Well, we have heard that before but not this way and not the way she was acting. The PT went to get the nurse and I sat and talked with Shan. I finally got enough information from her to know that her headache was much worse and it was making her so tired she couldn't do anything. It wasn't time for more meds and so she really shouldn't have been in that much pain. We took her back to bed to let her go to sleep...but she didn't sleep. Again, unusual. I asked her if she wanted a blessing and she immediately said yes. I was getting quite concerned myself because we hadn't seen this kind of behavior before. I arranged for Rob Wellman, one of her most favorite people, to come give her a blessing. We called Joel, another dear friend here in Salt Lake and in 30 minutes they were both here. In the meantime, from the time Shannon said she wanted a blessing, she began to improve. I believe that was because of her belief and faith in the Priesthood. She received her Priesthood blessing that told her that her headaches and dizziness would dissipate but she would have to be strong. The next time I asked her about her headache it was more of the typical headaches that we have been used to dealing with. She had been taken tylenol and motrin as soon as it was time in the morning. Well, now 10 hours later and after the blessing, she hasn't even asked for meds. She says her head still hurts but nothing like it was. As simple as that may sound to some, the bottomline is that the Priesthood of God is here on the earth and those that are worthy can access it at any time. And through that power another miracle took place today!

Monday, June 7, 2010

Sense of humor

I guess you are stuck with me again tonight. Udell works out of town and is gone for a few days. The worst part about that, is he is the one that has been with Shan today. So I will do my best to report what has been reported to me!

Great day. Shannon was right back to the hard work of therapies. I understand she walked up and down the hallway (assisted) but she did it!
They have cut the amount of food they are giving her again. I guess they feel that she is eating enough calories to cut back. That is good because hopefully it will make her more hungry and she will eat more.
Shannon really has not lost her sense of humor and in fact, maybe it has been enhanced! Her ability to communicate continues to get better. People come by and are amazed at her progress. It is so hard to explain it on the blog. The steps are so little but being here watching her, they seem like huge steps! As we continuing to watch this miracle, we wish that all could witness it themselves instead of through the blog. But please know that she is down right amazing! The only thing she ever even complains of is occasionally her headaches. The only things she rebels against is the seatbeat on the wheelchair and always wearing the helmet when she is out of bed. Her rebellion you see as she quietly puts her hands over the belt and when she thinks you aren't paying attention, she undoes it. The helmet is the same way. She will also tell us repeatedly that she really doesn't have to have a seatbelt and she doesn't have to have the helmet to get out of bed! She can be pretty adamant about it...but then as we look at where the bone is missing in her head...we are more adamant than she is!

Sunday, June 6, 2010

Simple things

It's been a very quiet Sunday. It's truly been a day of rest for Shannon. She has slept most of the day! But this is definitely expected and needed. Tomorrow will begin another rigorous week. We went for a short ride in her wheelchair out to the gardens here at Primary Childrens Hospital. It was so beautiful outside but I could only convince Shannon to stay out for a few minutes. She wanted to get back to her bed.

Shannon also had a visit from President Nilson and President Owen. She was very happy to see them and enjoyed her visit. They brought with them the LONG butcher paper poster that so many youth had signed at youth conference. As soon as they left, Shannon insisted I read them all. She loved it! She loves hearing from family and friends. So all of you youth who signed the poster, know that you made a difference in Shannon's day today!

None of us would be surprised, but she does have a number of headaches. Today the tylenol hasn't worked as well for as long. The doctor said that she will probably have headaches for a long time. She is dizzy/lightheaded when she gets up and that too will be an issue that she will most likely deal with for a long time.

The doctor also decided today, that since Shan was eating so well that she shouldn't be given so much through the tube. Before today, she was on continuous feed, now they have shortened that by 5 hours. This should hopefully make her more hungry and get her to eat even more. I think she will eat more when she doesn't have to eat everything pureed! She did not like her PB&J at all today! It's the little things like this that make me realize how much we all take for granted in life. Being able to eat something as simple as a peanut butter and jelly sandwich is not something most of us think twice about. The good things in life are really the simple things and we usually don't think about them or acknowledge them....until we don't have them. We are grateful to be reminded of the simple things through Shannon's daily progress of getting them back in to her life!

Saturday, June 5, 2010

End of the day--3 1/2 weeks

Good day! Not too much to report and it would be better if Udell did this or Kate but I am going to attempt it. Shannon's voice has continued to get stronger. But the doctors felt the benefit of the scope was still necessary. So they did that this morning while Shan was eating. The vocal chords look really good. They did notice some reflux and felt it was important for Shannon to continue to talk, cough and clear her throat; all things that strengthen the muscles in her throat. And that what she has done all day today.

Shannon has been very interactive today with lots of talking....sounds like her, doesn't it? She has enjoyed having Kate here with her. They really are the best of friends. Kate has repainted Shannon's toenails for they are bright flourescent orange! Pretty wild. But she loves it. The report I got from Kate said that Shannon walked on a treadmill today! She went for, I think she said, 5 minutes. She also said that after the first 30 seconds you could tell how hard it was for Shan. But she stuck with it. Shan is certainly a fighter. We are so grateful for the example she is to us.

Shan is also looking really good. The scar on her scalp is basically all healed. Her hair is getting longer--but they will take care of that again when they put the bone back in. She laughs and makes jokes with us. She is still making connections so everything doesn't always make sense but we know that her brain is working hard at the reconstruction. We are ever so grateful to see the progress she continues to make and appreciate all the prayers given on her behalf. We hope you all have a good Sabbath!

Friday, June 4, 2010

Lift Up Your Voice

To really report on the events of today, I need to go back to yesterday evening. Over the past couple days, Shannon has been more interactive with us, carrying on limited conversations and more interested in things around her. Yesterday evening as Pheobe was getting ready to pass the baton to me, we were talking about various things and Shannon said, "Daddy, would you give me a blessing? I think you can put your hands on my head now." So I was able to give her a priesthood blessing of health, strength, comfort and recovery. We were reminded of the pure and simple faith that she has always possessed, and of her desire to seek the blessings of the Lord in times of trial and difficulty. The three of us shared a tender experience as we felt the love and care of the Savior in our lives.
As Pheobe had mentioned yesterday, one of the major concerns we have is how Shannon's voice and neck are functioning. This seems to be affecting many of the things that are very important in her continued progress such as nutrition, protecting her airway, and communication. I had spent a fair amount of time talking to her about focusing on two things today, her voice and the muscles in her throat. She must have taken the pep talk to heart because she showed great progress in both areas today. The speech therapist was really pleased with her improvement during the morning session both in terms of her ability to eat better and the strength of her voice. By the afternoon session, things were even better. While yesterday you had to be right next to Shannon to hear her whisper, today you could hear what she was saying from across the room. I kept trying to annoy her to the point where she would just yell at me to "bug off" but she isn't to that point just yet. She really loved her pureed pears. When she ate the first bite of them this morning her reaction was, "Um. That's good." She was supposed to have the scope done of her throat today, but there was enough happening at the hospital today that we had to postpone that until tomorrow morning.
She has also been building up her stamina for her therapy sessions. She still gets tired but not as early in the sessions. She has her opinions and preferences. They have had her playing a game they call "Bop" where she holds a bar and hits a beach ball with it when the ball is thrown to her. She let the therapists know that she thought this game was really stupid. So this afternoon they replaced that game with basketball, much to her joy and satisfaction. She did about 2 1/2 hours of therapy today so she is getting really close to making the transition from the Trauma team to the Rehab team. I imagine that will happen early next week.
I should mention one other thing. Shannon has been really interested in the cards and posters that people have sent that are hanging in her room. This afternoon she wanted me to read the messages to her that friends and family members have sent to her. She also had me read the comments that you have made on the blog. She will often break into a smile and she hears what you have written--the expressions lift her spirit and let her know of the love so many people have for her. Thank you for taking the time to share your thoughts and feelings with and about her. And thank you for your continued faith and prayers. We gratefully acknowledge the Hand of the Lord in her progress each day and are humbled by the love and grace that He extends to us.
One final note, many thanks to our daughter-in-law, Kim, for putting style into the blog. Her layout, formatting and content make it so much better and readable.
Udell was with Shannon last night and all of today so I took the opportunity to go to the temple. I had been thinking and praying about her vocal chords and her endurance. But by the time I left the temple, my focus had changed to be more on 3 words; patience, trust and order. The temple teaches us so much about order and how important it is in God's plan. Even the universe has its specific order! I realized that when we live our lives in order, there is more joy and happiness and less heartache. All around us, the things that are working right are done in a very specific order. That made me think about how the brain is organized and that there must be a specific order for Shannon's brain to reorganize itself. So in the temple, I realized that I need to have more patience and trust in the Lord. I know He knows what He is doing. Why should I want to specify what the next step for Shannon should be? I vowed that I would try again to show the Lord that I do trust Him by striving to have more patience in the process of this miraculous healing that is taking place.