I am sorry you are having to go through this again with your daughter. I am sure it was so scary to do it with an infant. I can relate to the feelings of just wanting it be done and also not wanting to do it at all. I felt exactly this way and definitely feel like a huge weight has been lifted now.
Her being older will definitely have some challenges but kids really are amazing and resilient. We have had to deal with his feelings related to the loss of control of some things, especially about having to shave his head. He is at the age where image is everything, so even though we tell him his hair will grow back that doesn’t really help him feel better now. His friends are really into the Jordan brand clothing so I was able to find a cool youth Jordan beanie that he likes. Also, I let him pick out a special shirt to wear that says “Badass brain surgery survivor”. He enjoyed getting to wear it in the hospital, especially since he picked it (even though I tried to discourage that particular shirt lol).
As far as advice for the hospital, not sure if you will be using your local hospital or traveling out of town but for us we were able to get a room at the Ronald Mcdonald House that is across the street from the hospital. We didn’t go there until he was out of the PICU. Once he was on the floor it was nice to have a place to go to shower and just have a moment to recharge. My husband and I would take turns stepping away and it helped me to be able to deal with my emotions and be ready to stay strong for Luke.
For recovery, I wish that I had found an outpatient therapy center and made sure that we had the proper referral form ahead of time. We were given a paper copy of the referral for PT/OT from Cincinnati and I called our local pediatric rehab center before discharge and was told they could accommodate him for outpatient rehab, but here we are a week later and still trying to set it up because they needed a different form filled out. They said this issue has to do with it being an out of state referral, but it is more about making sure the insurance company will pay. Luckily, today his PCP was able to fill out the correct form and he is on the schedule now.
He will likely be able to go back to school on 4/21, so two weeks post op! At first, I didn’t think that would be possible but he really is getting better every day and I think he will do fine. He is still tired often but not really complaining of pain now. I think the biggest issue will be getting him out of bed in the morning.
I hope things continue to go well with your daughter. I know how hard this decision is to make even knowing it is the right one. Hang in there, you are almost there! Let us know if you have any other questions/concerns or just need to vent. This place has some amazing support!