PICU Day 3

Day 3 in PICU has consisted of a lot of sleeping, transitioning to oral pain meds so we can get the rest of the IVs out. Trying to walk more and be upright as long as she can endure. Henley’s biggest issue right now is neck stiffness, so moving her head from side to side is extremely challenging. This is due from the fact that they literally moved all of the muscles around to get to the brain and then have to sew everything back together. Every morning we see about 6 different doctors before 8:00am. They have the Neurosurgery team that comes by to check on her, talk though the night, and then they have the Neuro ICU team that comes by to do their rounds as well. It’s a well oiled machine and they all do a great job communicating and collaborating to make sure every piece of info is being heard, every move is in the patients best interest with lots of check and balances built in. It’s impressive for sure. Henley did great in physical therapy today and actually climbed a flight of stairs! She continues to amaze me with her pure grit and resilience.

Today our goal was to get moved out of the PICU by the end of the day and into a step down unit so we could get a private room with our own bathroom and let her get a shower. The PICU is not the place for a peaceful nights rest, especially when you have someone coming in every hour for neuro checks. We are anxious to get out of the hospital as soon as possible because we know Henley will be more comfortable once she can be back at our AirB&B with her cozy blankets, softer pillows and even more of those comforts from home.

Adam came to the hospital this morning and then my brother Erik came and brought Haven & Zane with him while I left the hospital for the first time and went back to the place we are staying, took a shower and crashed for a couple hours. It was much needed. I have felt like an absolute zombie for the past 3 days. Grandmommie and Papa have been grocery shopping and are taking care of feeding people, doing laundry and making sure the other two are doing schoolwork. It’s been so good to have them here to do things I just can’t focus on right now and it’s allowing us all to be together which is also helpful to everyone’s mental health. Henley has really needed her siblings here.

While I was gone and Haven stepped right in and helped Henley with her socks, held her iPad for her to watch things while she tried to stay in the chair for a while. It’s been sweet to see how Haven has served her sister today. Later in the day, me and Grandmommie came back to the hospital and brought Henley a little gift that her friend Emerson had sent to her and Grandmommie ordered some Sprinkles cupcakes to be delivered to the hospital. NYC does delivery of just about everything and they do it really well!

After Henley had dinner and ate a cupcake, they let us know that we had a room in the step down unit and they were going to let us move! We got moved over here and Henley got a FaceTime call from a good friend which was like the perfect ending to this day. FaceTime calls and texts from people back home are giving her so much life right now which is good for us to see. The hospital can be super depressing and it can be hard to keep spirits up when you’re far away from home. It’s good to see a friendly text every time you pick up your phone and she is craving these interactions right now for sure.

For now, we are off to sleep. Here’s hoping for a peaceful night and getting out of here as soon as possible. Hopefully tomorrow.