grace led in life: Isla's 10th VEPTR surgery (VEPTR expansion and tethered spinal cord release surgery) back to the hospital Oct 31,2022

Thank you so much for praying for Isla...
We had plans of flying home Monday night...but those plans had to change.

On Sunday night we noticed that Isla's incision for her spinal cord detethering surgery may be leaking. She was becoming sleepier and wanting to lay down all the time...not feeling well. She also had a lingering cough since intubation. She slept fairly well, but a lot longer than typical. we kept a close eye on her and when doing her incision cleaning the next morning, we could see that she had clear fluid leaking at the top and bottom of her spinal cord detethering surgery incision.

We had been in contact with both of Isla's teams of surgeons and they told us to come into the emergency dept to get checked out. According to what we were describing and photos we sent, it appeared Isla was leaking spinal fluid.

They confirmed that Isla was leaking spinal fluid and neurosurgery was trying to decide what route needed to take to help stop the leak. She was put on antibiotics to protect her spinal fluid and we are keeping a close eye on her cough as well. Intubation always causes irritation and for Isla to have some congestion after surgery. Generally, we would be trying to get Isla to be walking soon after VEPTR surgery to help with that, but she had to be laying down and quite still and so we think it just became a bigger cough for her. We are hoping the more she moves, the better it gets. She has had tests and x-rays that have come back clear.

It was decided that a neurosurgery doctor would add outside sutures to her incision to pull the seal even tighter and try to stop the leak that way. She would have to be admitted to the hospital again for observation for at least 24 hours.
ISLA IS SO STRONG...she was given some pain meds through her g-tube, but they could not do any local anesthetic around the incision for fear of the anesthetic getting into her spinal fluid inside her body.
The doctor warned us that she was going to feel the sutures and it would be painful for Isla.
Isla calmly said "ouch" a few times, but she did not get upset at all...the doctor was SHOCKED.
We are so grateful for everyone that was praying!!!! Isla seemed to be a peace during that, which was the biggest blessing. She fell asleep on me immediately after the procedure and slept very hard.
After 8 hours in the ER, there was a hospital room ready for Isla. It was a very long day.
We were so grateful to get Isla to a quiet room and it was so good to have a restful night for Isla.

Isla slept fairly well, with a little 30 minute singing worship session at 12am. ha!
Isla woke up fairly happy...not happy to be in the hospital, but she was able to eat, her incision is still not leaking, and she was cleared to go for a walk now.

We got to take Isla on a little walk around the floor...
We were able to say "hi" to her favorite "gingerbread men" mosaic :)
The playrooms are back to being open! So, we were able to choose some toys and books to bring to Isla's room to play. They also had costumes kids could pick from...so Isla was so excited to be Minnie Mouse! She is currently now dancing to "ballerina music" in her Minnie Dress 💖
such good exercise for her lungs!

Our prayer is that Isla would not have a spinal fluid leak anymore and that her throat and lungs would completely clear.

We will keep watch the rest of the day, on both the incision and her cough, here at the hospital. If there is no leaking or swelling, they may send us "home" (hotel) again tonight. We will remain in Philadelphia again for a couple of days prior to flying home to be sure that no fluid starts leaking again.

We'll try to update as we can.

Please keep praying for Isla 💓