Long post warning!!
This recovery has been so weird. In many ways, she has done great! She hasn't had any of the pulmonary issues she usually struggles with, and that's awesome!
But some concerns have kept her from being cleared for PT, so we can't do anything with her. Except for going on the bedside potty, she isn't allowed to move. We haven't even been able to work on sitting up--she is unable to hold herself upright while laying in bed. She needs to be supported by a blanket roll at this point. Her legs continue to cause severe pain from the hip down the thigh, and I found out why: Dr. Campbell takes muscle from the hip to support the VEPTR. We were told her range of motion in her legs will be pretty drastically affected, but that she can gain it back with lots of work.
A CT was supposed to be done this morning to examine the area of concern, but additional dialogue needed to happen with Dr. Campbell to find out what images he needed. She ended up getting it around 3:30, but no one seems to have results yet. It has been a stressful "hurry up and wait" situation that has taken its toll on me! We are hoping and praying that Dr. Campbell likes what he sees in the CT and that nothing further will need to be done.
For being almost completely immobile, she is able to play quite a bit. We played another hand of Uno, where she beat me fair and square once again! She did some coloring and a few crafts. Her personality is coming out a bit more. It's hard for her to talk too much because of the pain and effort it takes to push air out, but she can still find a way to be sassy! :)
The highlight of her day was when her friend Pawle (pronounced Paul) came to do music therapy with her! She loves when he visits, and it's so fun for her to play real instruments. He is such a cool guy!
As is our routine, Abby and I talk each night before bed about what was better about today. Here's our list:
* We now have our own room! Dr. Campbell told us to expect to be here at least another week with this set-back. When our nurse heard that, she went right out and told the charge nurse that we needed our own space! Bless her!!! I thanked her profusely! It is a lovely corner room that is all ours!!
* Abby got to do music therapy with Mr. Pawle! :)
* Matt and Caleb are coming up tomorrow night for the whole weekend! We can't wait to see our boys!
* Abby is off of oxygen while awake, and being monitored while asleep. If she needs it, we put it on. So far, so good tonight! I'm making her sleep on her side tonight, which is the best position to open up her tiny airway.
We end the list with "Each day gets a little bit better!"
Here are tonight's prayer requests:
* The big one tonight is that the CT comes back ok. There is cause for concern and I'm trying really hard not to worry! But if there's an issue, I'm glad they are dealing with it now instead of sending us home and something happen. As much as we don't want more surgery, we do want her to be safe! To cause more panic attacks, Dr. Campbell will be out of town for the next week or so. His associate will be here, but he is not our Dr. C! I am trusting that God will give Dr. Cahill wisdom to do what is best.
* If/when Abby is cleared for pt, please pray for her pain control! I have had to guard her pain pump today, as pain team kept wanting to take it away because she wasn't using it very much. I reminded them that she's not allowed to do anything! While she is still, we don't need it! I want her to get at least a day of pt behind her before we take away the pain pump. This is a hard surgery!!
* Pray for Abby's emotions. Today, a simple wipe-down pushed her over the edge and had her begging me to just take her home. She was crushed to hear Dr. Campbell say another week. Her tears break my heart!
* Pray for my nerves. Panic attacks are a real thing for me, and these setbacks are concerning. My typically stoic post-op personality has been wavering because I feel pretty helpless in this situation.
This is not for the faint of heart! She is such a tough kid. Thank you for all of the well wishes! I read her all of them and show her all of the pictures. She knows how much she is loved!