Another day to celebrate! They took the pic line out! That's the last of the IV lines. They took the final stitch out of her head from the EVD line. All that is left is the feeding tube. Tomorrow she takes the swallow test again and if she can swallow without any aspiration, they will start feeding her real food. She says the first thing she wants is a snowcone!! When she is eating enough for a high enough caloric intake, they will take the feeding tube out.
Wouldn't you all love to have this problem? She needs to double the amount of calories a normal 16 year old would eat because of the amount of work her body will be doing through this relearning process. Shan has never been a big eater so this will be a challenge for her-- but again, who wouldn't love that challenge!
Shannon has gained a lot of strength over the last 24-36 hours. About a day and a half ago, she was needing full support for getting up and moving to the chair, but each time she did, as I held her as she got up, I could tell she was getting stronger. Earlier this afternoon, she needed help getting to the sitting position, but with my arms wrapped around her for balance and security, she stood on her own, took probably 15 steps into the bathroom and back!! A major improvement that the Occupational (OT) and Physical (PT) therapy folks will love.
This morning PT/OT worked her really hard but she was right in there with them. So this was before her feat of standing up herself--the therapist left the wheelchair 3/4 the way across the room, she walked it with much help and a few taps to get the right foot to move at the right time. When they reached the therapy pad, they made her stand for the longest time. It was pretty difficult for her. She was still having a hard time holding her head up and her body would often collapse but with a little help she would pull herself back upright except for her head. It just seemed too heavy. When the therapists said she was finished, she shook her head no and continued to work on standing there for probably another 1-2 minutes! What a fighter!
They had her catch the beach ball and throw it again. She did well there too. Then they laid her on her belly and showed things to her that were probably 30" in the air. She was to hold her head up so she could see the item, reach for it and put it in the basket. That was hard. With a lot of effort, time and a little help she got 2 done. Then she laid on the pad exhausted! They gave her a couple of minutes and then had her do it again. This time they wanted 5 and they got it!! We are so glad she is such a high achiever!! Then she made her way back to the wheelchair and was willing to let me take her for a walk to the 3rd floor patio outside. We sat out there for about 10 minutes before she just really wanted to get back to bed. It was great. She loved breathing in that fresh air.
Speech therapy brought a few new interesting steps. Someone had suggested we give Shan a white board so the therapist brought one in. This is where the brain is so fascinating. Remember I talked about the brain reconnecting from the ground up? Shan took the marker and white board, and wrote a sentence-rather a question of 5 words but only the first 2 were legible. She tried again but the connections were just not ready yet. So the therapist gave her a picture board of a keyboard and told her to spell out the answers to the questions she would give her. The first few were yes and no questions. The therapist then asked, "do you live in Salt Lake City?" and Shan tapped out yes. I said, "no, Shan, you don't live in SL but you have been in Salt Lake for a couple weeks in the hospital. Where do we live? She tapped out A-l-p-i-n-e!! It was cool. She has tried to whisper words today but not as many as yesterday. In time.....
These are all little baby steps but to us again, as I said before, they are miraculous! Truly we have seen where you spend months doing the same kind of activity and never getting the connections made for the correct response. Everyone who is familiar with OT, PT or Speech therapy know that what Shannon is doing is incredible! Dr. Hubbard from the picu came by just to see her progress. She was so excited and said in her line of work, they don't get to see many of these kinds of successes and she just has to keep returning to see how Shan is doing. We will be excited to one day go marching in to the picu with Shannon in the lead!
Shannon is off all the sedative drugs now but some of them can stay in the system for up to 72 hours. It has barely been 24. She has been so exhausted today and so has not been awake much except for therapies and some of the doctors' visits. But even so, they tell us that all this work that she is doing and having been in bed for as long as she has been is very hard to recover from and it takes a long time. We remain ever so optimistic because of all the miracles we have seen to this point and because of your prayers. There is not a doubt in my mind of the power of prayer! Even when fear tries to creep in, prayer can chase it away. Even with all these struggles and challenges, God's plan is so perfect. Going through this is no fun for us or for Shan and given a choice, we would not go through this. But as I think of the many sweet tender moments I have had and the answers to so many prayers--big and little, and the joy we feel over the little successes, I recognize the wisdom in God. We are learning so much.
Let me end with this thought. As I talked with Aaron last night, he made the comment about how our lives on the outside of this situation has pretty much stopped with the exception of one or two things. Being very very busy people, we all of a sudden can drop out of life and things go on. When we are so busy and stressed over how busy we are, we need to stop and remember that in reality, we could probably drop 95% of all that we do for that which matters most.