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