Around midnight after we gave him his only extra dose of pain meds and a 101.7 degree fever, he turned to me and said “rocket ships”, him and Claire have their own titles for TV Shows, he fell asleep to “Little Einsteins” aka “rocket ships” last night. The room we are in has all sorts of DVDs (we are in a special room, called Liam’s Room that is meant specifically for palliative care and let’s both parents and even siblings stay, but I could go on and on about all the differences between NYU and Morristown, there is just no comparison, as Casey said having a wagon with an IV pole here right when you walk in tells you not even to try, this place is child centered vs NYU which was so damn sterile feeling) one of them being “rocket ships” he has been watching it on loop, around 9 when he was safely asleep I turned it off so we could all get to sleep, when he woke up in some discomfort and we got that under control, he immediately asked for it, and this right here is the saddest part, he has not missed a beat cognitively, he is 100 percent there. Half of me wanted to put it on, but it was Casey’s turn to cram himself into the twin hospital bed (Con takes up 75-90 percent with his positioning, one of us gets the rest so he can be “hugged”). The rest of the night was uneventful, the fever went down and the current dosing seems to be working. We were higher at one point yesterday, but he was unconscious, they played with the levels and he is now awake a bit which was the goal. We had a hospital bed delivered to our house yesterday, the infusion company is meeting us here today to give us his meds and connect his pump and then we should be able to go home. We have officially been transferred off oncology and now the palliative care doctor is our primary, that was kind of sad in a way, cancer has been the Bain of our existence for the last 15 months yesterday when they came up, they said once you go home there is no need for him to ever come in again unless the pain gets uncontrollable but hospice should be able to handle that. As for timing, we are close (which Casey and I were not prepared for, we have not let any visitors come except Claire and have in general avoided people, we thought we had much more time, but in reality the fever he had could have easily turned into sepsis and since we don’t treat that is it, that is why we both stayed last night, Dr. Gregory sort of admitted that would be a much better death than what could happen), but they have also told us the have seen kids “rally”, knock on wood but it seems Con is, he is in a much better place than he was 48 hours ago and is still eating to the shock of everyone. So nobody knows.
We spent a lot of time yesterday with social work and with child life, specifically discussing Claire, the end result this could not be happening at a worse time for her, with school ending in two weeks, it is just going to be too much change. They said at her age guilt is a big feeling and she may feel like she did something to make Con go away, they gave me books to buy, they are going to see her next week for a play therapy session and other than that we need to keep her schedule as normal as possible (this is another place where Morristown excels, the support for the family and being able to tell me what to do for a three year old). She needs to know she will be taken care of, for that reason my parents slept in our house last night so she could be in her bed, have her routine, Amanda and her are meeting Laure, Maddie, and Ryan this am which is something she does often on Friday’s. For those that have offered to have her come play with your kids, thank you, we will need all of you in the coming weeks.
So that’s it in a nutshell, things have settled, we are anxious to get him home where he will be more comfortable.
Making herself right at home, there is a button you can push to open the doors I had no idea about Claire sprints ahead with her hand in the air, “I push the button”, reaches up, I scream no thinking she is opening someone else’s room as she pushes it and the main doors to playroom swing open, the whole nurses station laughed, she knows her way around better than me!
Very excited to get to school hanging out the window:
Excited to go to the park with Ryan and Maddie!