Today started with physical therapy specialist evaluating Elizabeth in the morning. They have recommended acute rehabilitation for Elizabeth which basically means intense rehab. We were hoping that it would get going today but the insurance company was slow getting back to the hospital. It will start tomorrow. We are anxious to get started as could be imagined. She slept so so last night and is very tired still. Her jaw is still the biggest problem right now pain-wise. The incision on the head ironically does not hurt that much as there are not a lot of nerves there but the jaw muscle being cut is a very painful thing. The stitches in her head are the dissolving type. The pain drugs make her really drowsy when they kick in. These drugs also make her nauseous which they give a med for that too. When she opens her eyes she gets pretty dizzy still and that also makes her feel nauseous. Her eyes tend to be closed a lot for this reason. All this leads up to not being able eat without throwing up. Although, she did eat a little today which is more than it’s been which is good! We’re trying to bring in foods that she’s craving. Tonight we brought in pizza as she asked for it. Unfortunately the jaw is just too sore to chew that even though it was pretty soft pizza. She ate a few bites. She also asked for strawberries and blueberries and was able to eat a little of that once it was chopped. Also had a little vanilla ice cream. Tomorrow we will try frozen yogurt as she has requested. She’s drinking a little soda and a fair amount of water. We really need to get this eating thing going… not even soft foods are working right now…. I hope this improves soon. Her strength over all has improved each day. The left arm/leg weakness has also improved some since yesterday. Speech and face are a tiny bit better. She was also able to take a shower again today and did well with that with a little help from me. She also walked the circle of our wing once this evening which was great and her balance is pretty good. Even though she doesn’t sound/look the same she still has her same funny wit about her!! She is constantly cracking up the staff here. Again, which is so amazing considering the situation, but that's just her J …She and I had a really good laugh together today (which was the first time in past 3 days) as I asked her if she needed anything and she said “a head transplant”. It was a nice moment because of the laughter but also because I haven’t seen her smile that much since all of this (her left side face muscles don’t allow her to smile easily). I would often describe Elizabeth’s smile as having the power to light up the room! Those of you who know her know what I’m talking about! It still did that for me! .
Elizabeth’s mom Michelle was there this morning and I was there in the day and evening time. Michelle and I have been a good team through these last 4 days. She has been a gigantic help with Jack and Elizabeth both! My sister Rebecca and brother- in-law Tom have continued to be an amazing help with filling in all the loose gaps from doing to laundry, to supply runs, to watching Jack, to pizza runs for Elizabeth, to just great moral support. They have also offered up their home as Elizabeth transitions into rehab and Michelle and I leave the hotel which is on the campus of the hospital. The Hampton Inn could not have worked out any better… nice place that’s clean, with all the stuff you need especially being so close. I can walk to Elizabeth room in under 5 minutes. I was very thankful that it’s so close. This place is a must for anyone coming here to have a surgery at Barrows Neuro. Tomorrow is a big day with starting rehab but also packing up two hotel rooms with a 22 month old in tow and setting up at Tom and Rebecca’s house. Thanks so much Tom and Rebecca for everything including your house!
Elizabeth is set to move to the rehab wing at Barrows which obviously is the place you want to be for this. She should be over there by mid day tomorow (Tuesday). She will have her own room at this facility and will be there for at least 10 days and would then continue at home… at least that is the tentative the plan. We’ll obviously know more in these first 10 days of rehabilitation.
Elizabeth continues to ask me to tell you all that she is so grateful for all your support and positive energy. I continue to read her all the comments on the blog left for her and I. She hangs on to every word as I read them to her! I see in her eyes how much it means!!!!
I’m am pretty worn out as could be imagined. These days are so tiring and go by so fast I often can’t remember what day it is or what time it is... I will try to sleep now…
Thanks so so much everyone!