We were all exhausted yesterday and so this morning (March 4th) we slept in and missed hotel breakfast. Jaylia actually only woke up about 11:30, we had to grab the shuttle to the hospital at 12. She didn't want any of the food we had brought for her, and when we got to the hospital she was already in a rough mood due to a car seat issue in the shuttle. The only thing she would even consider eating was a frozen yogurt.
It came out of this cool machine, and there was a little video of a robot making it. Kinda fun.
After that we met our neurosurgeon who will be placing the bolt monitor to measure her ICP and be in the OR in case of any issues with her brain during the expansion procedure if that ends up happening. He was very kind, and told us about the procedure and some things we can do this weekend in Philly. Jon and I liked him a lot. Jaylia heard more details than she had previously, and that was really hard on her.
From there we went to get her special cleaning wipes for the night before surgery.
We also met with the Child Life specialist, she has been very helpful during our prep for this trip. She saw Jay having a hard time and did her best to help. But ultimately we had to pick Jaylia up and carry her outside and sit for a bit to cool off and settle down. Then we went across the street to our anesthesia appt. We got there a bit early so we visited the food court and the gift shop. Jaylia got some grapes.
Her llama helped us check in. But after this we had to do the covid test. She knew what was coming and wasn't having it. She screamed so loud another nurse came in to check on us.
After that we chatted with the anesthesia nurse practitioner and got our lab orders. This really set Jay off. We headed to the lab, but realized we forgot her booster seat in the anesthesia clinic. So Jon went back to get it and we waited outside the lab. 😠She didn't want me to touch her or anything. 💔
After Jon got back we checked into the lab. Jon was able to get her to walk into the lab, but when it came time for the poke, he had to hold her legs with his legs and he held an arm while one phlebotomist held her arm to be poked and I tried to keep her attention while a second phlebotomist did the blood draw. She screamed "I hate needles!!!!" And flailed so hard the one phlebotomist said, "OH! SHE'S STRONG!!!!"
They were quick though and got what they needed. After that we caught the shuttle back to the hotel.
Jay got this cool locket at the gift shop. She loves shiny things! As you can see she rebounded pretty well from the hospital visit, but she is definitely processing. We've been talking about the possibility that some of her head will be shaved when she wakes up.
Covid test came back negative, so we are good to go for Monday. We check in for surgery at 10AM EST.
Tomorrow we are going to the zoo, and maybe the Liberty Bell, and the surrounding area. Hoping to take our minds off of the impending surgery.
Today things got really real. When we were talking with the neurosurgeon he confirmed that waiting to see with cases like this is really not a good plan. I'm thanking God for the continued confirmation that this is where we need to be and know that He is holding us and guiding us.
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