Post Surgery Update
The first 24 hours after brain surgery is always pretty rough. This time is no different. Once we got to see Henley in the PICU (pediatric ICU) she was hooked up to all kinds of things which is always alarming. She has IV’s in both of her hands, an arterial line in her wrist, pulse ox on her finger, heart monitors all over her chest and automatic compression sleeves on both of her legs. She was given a lot of drugs during the surgery and those are always rough on the body to come off of.
Needless to say, it’s difficult to “get comfortable” when you have all these tubes and cords to manage.
In addition to that, she was complaining that her neck was hurting and that it felt really weird. I would say this is a valid complaint because they literally moved all of the muscles in her neck yesterday to get to her brain and then sewed everything back together layer by layer.
When we met with Dr. Greenfield yesterday after surgery he said that there were two really notable things that he discovered when he opened her up. The first was that the dura (the covering around your brain) was hard as a rock. It is supposed to be pulsatile which means that is should be thin and it should move with her heartbeat, but that was not the case. The other thing he found was that her cerebellum was actually tethered (stuck to) her dura which is not supposed to be the case either. Dr. Greenfield additionally removed about 10% more of her occipital bone because he felt like for her age now, it was a relatively small opening for her brain to have the adequate space it needed. It was adequate for her as a 7 year old, but she has grown and so has her brain over the past 6 years.
We are not sure how long Henley will be in the ICU but they will try to get her out of here as fast as they can based off of her progress. Currently they are doing Neurological checks every hour where they come in, shine a light in her pupils to check for responsiveness, they check her ability to follow commands, smile (facial response) and use her arms and legs. So far she is doing all of those well.
They really want her to be able to sit up, eat, move her head side to side and maybe even try to take some steps today. Sitting up for longer than about a minute is challenging right now. She has struggled with some nausea, so we are watching her closely to see what is triggering that response and trying to get that under control. They have her on a lot of heavy meds, antibiotics to prevent any infections and steroids for overall inflammation. It’s a lot on her system right now and her body is certainly not used to this amount of substances.
We have had great nurses so far and everyone is super kind and helpful. Because this is a teaching hospital we are seeing a lot of different therapists, residents, fellows and attending doctors and so there is a lot in the way of collaboration and fresh energy that I really appreciate. As much as we wish we were home, we are thankful to be here with this staff.
Specific Prayer Request: I think my biggest worry right now is that this new patch they put in yesterday somehow hardens and calcifies like the last one. I know that I have no control over how this heals for her, but we can pray, right? So that is my prayer for her. That this tissue they have put in will somehow stay flexible and not thicken and harden like it did.