I am writing this as I sit on a plane headed for Salt Lake City. It feels so wrong. It just feels too early for a mother to leave her son in this situation. Arguably one of the hardest things I have had to do in my life! It was a committee decision and logically, it makes sense, but emotionally...not so much! As a support team, we decided to take shifts, since this will be a long and arduous road ahead....Pacing is a very smart idea. So... Michael, Scott's dad, is there with Ashley this week. The good news about being gone for 5 days is that he will likely have made some big improvements when I get back. He will have his speaking valve in, and he may be eating and talking.
The blog reigns will be handed over while I am in Utah. I will be as anxious for posts as the rest of you!
Last night, Scott was very active. We have been told that he will become more active as he becomes more awake. The tough piece is knowing when the restlessness is due to pain (bad) and when it is due to increased consciousness (good). His pulse rate has been our indicator, so far. His pulse rate is commonly 120-130 when he is in pain, but remains in the 70's and 80's when he is "just awake". He did get quite aggressive at tugging on things last night, though. He pulled out his IV, his trach canula (the inner tubing), his catheter, and his pulse oximeter. He gave the night crew a run for their money. He also did a gazillion partial sit ups in bed last night, and is now rolling over onto his sides by himself...both sides/even the right! He is visually tracking to sounds, at times. They will put a smaller trach tube in on Monday... the speaking valve will be next....then maybe eating (if he is more awake). They have taken the ventilator out of the room, since he has gone 3 days and nights without needing it. Yeah!
We have been tapping into our family resources this week to help us understand and manage this phase of Scott's recovery. It has been a huge learning curve for us. My fabulous sister-in-law, Robin, who is an RN, has a lot of experience in critical care, teaches nursing students, and has been a legal consultant for medical malpractice cases for many many years has been an extremely valuable resource for us in adjusting to the LTAC phase. Thank you so very much, Robin!
She also has a contact that she has used as an expert witness in the past, who was a neurosurgeon at Barrows for many years. She contacted him re: general Barrows Neurological Institute qualilfication questions that we had. In their discussion, he said that it was GREAT (his words and his emphasis) that Scottie has been able to follow commands before the 2 week mark... It will be a long road, but there is hope. It seems like such a long way away right now as he vacantly stares past us when we look at him and talk to him.... when he can't even hold his head up or stick out his tongue,....but it is reassuring to know that time is on our side and will be our friend in this case!
Keep the prayers coming... I'll "talk" to you again in a few days... for now, Ashley and Michael will be at the blog helm!
Love you all!
- Patti
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