Today was such a whirlwind!! We saw a TON of people and it was just a steady stream. I feel we are truly headed in the right direction now and have gotten more done regarding Abby's nerve issues in a day than we have in 3 months!
The rehab doctor who evaluated Abby is great. She did her fellowship at Kennedy and said their spinal cord program is where Abby needs to be. She said she has never seen anything like it. She is going to call and fill them in on Abby to get the ball rolling. We are so thankful for that "God thing!"
We saw urology and they agreed with everyone's analysis that the bladder issues are from the spinal cord injury. The urodynamic testing they recommend has to be scheduled months in advance at CHOP, but the rehab doctor is hopeful that KKI can do it. The spinal cord program does them all of the time there. This will determine the source of her bladder issues. The rehab doctor also ordered an MRI, which will be done while she is inpatient here at CHOP.
Pt and ot both came, so Abby has been in her chair 2x today. Both times it totally wiped her out and caused her to sleep for several hours each. I'm glad though, because She needed it. Do you see the hint of a smile?!?! They didn't push too hard, since it was just Day 1. Tomorrow they are hoping to do a little walking.
She's still on lots of pain meds, including a pain pump. We pretty much push the button whenever we move her. Any move is very painful.
She seems to like ice packs on her face. She's been complaining of her teeth and jaw hurting, and this seems to help. Opening her mouth is very, very hard. It took several attempts to get a toothbrush in there, and I couldn't get the backs of her teeth. So that means chewing is pretty much out of the question. She has eaten 6 tiny bites of applesauce today. 😕. I am hoping I might be able to get more in at dinner, but we will see.
If you've been reading my blog long, you know that the orthopedic residents are...special. When I asked about how to attempt to clean Abby in the halo, the resident said, "Hygiene isn't a priority." Her nurse replied, "Well it is to me!" She helped me use a tongue depressor to get a wipe under the brace to clean her up. Tomorrow I'm going to try taping two together. I get that this brace is important and we can't remove it, but she will reek after 3 months if we don't at least attempt to clean her up with it on!!
One bright spot of Abby's day was when Caleb sent her a HUGE unicorn balloon! She loved it so much and didn't even let go while sleeping!
Every day gets a little bit better, so here's what was better today:
*. we had a very productive day with lots of doctors who are all focused on addressing Abby's mobility and nerve issues.
*. Abby tolerated the chair 2x today.
*. She got some restful sleep without being agitated and in pain.
*. Her neck positioning is noticeably better with the halo.
*. We had a great nurse who we have had many times and who really loves Abby.