I cannot believe it’s only been four days since we started this stage of the journey. I feel like we’ve been trapped in 8B for years already. Today started off pretty well but had a bit of a downward spiral in the afternoon, before plateauing and being okay again into the evening.
Apparently the Bean was up and on the go at 6:30, so had already had a bath when I arrived, bleary-eyed from a weird sleep. (You know when you wake up with a start, like, agh! it must be morning! and then you look at a clock and you’ve been asleep for all of ten minutes. Terrible) Daddy took himself off to work and Gavin and I went to the lounge, went back for a bath, had a play, and returned to the lounge for Gavin to have a reiki treatment from one of the lovely women who charitably provide free treatments for Beanie. (They are both generous, beautiful people who have helped me a lot too!)
Bubby arrived around lunchtime and we then had to run IVIG for a couple of hours. During this time, Gavin had to be monitored closely for fever, rigors, or other reactions. Luckily, he took it well and seemed fine, except that when he had at first looked like he was about to pass out in exhaustion, he perked up and suddenly decided nap-time was a no-go. Throw in a meeting with the OT, social worker, and dietician and the morning was pretty busy.
The negative part of the day occurred shortly after Gavin had had a little barf. Hello, nausea! As I said, he wasn’t going to sleep any time soon so a bit later my mum and I decided to take him up to the Starlight Room. Starlight is a beautiful play-room for oncology patients that we have not had the chance to go to very frequently because they keep weird hours, are closed on weekends, and Gavin has often been banned due to fear of contagion if he has a fever. The room is meant to be reserved for 8B patients three afternoons a week, from 2-4, right in the middle of naptime. I was thinking that our chances of ever getting there were slim, and Gavin is not allowed to visit any other playroom, and there isn’t one on 8B. Of course, most of these kids do need to be kept isolated most of the time, but there are times when they are strong enough to be around other people. Once I realized it was 8B’s day for Starlight I got really excited and got Gavin all revved up about going up there. I was thinking it was going to be his last time off the floor and last time out of his room for awhile as we go into isolation tomorrow.
However. Imagine our disappointment when we got all the way up there to discover that he wasn’t allowed in because there were kids from another ward up there. The nurse was apologetic and probably didn’t deserve the hissy fit that I threw, but the room is supposed to be reserved for 8B patients at that time. The nurse told me that she had conferred with the Child Life specialist on the floor at 11:00 and told that no 8B kids were coming that day. As she never asked us if we had any intention of going I was a bit surprised to hear this. (She later told me that given Gavin’s young age, it had never occurred to her that he would want to go. Again confirms my opinion that half the people who work at the hospital know nothing about children.) Gavin’s little face when we told him we weren’t allowed in… it killed me. Such a disappointment for him. He did get over it pretty quickly though, whereas I stormed off and started leaking tears, taking it out on my poor mum.
It was just a straw, meet camel’s back situation, mixed with a little dehydration. I went off and had a good sob session by myself, and returned to the lounge to find Gavin curled up on Bubby’s lap completely conked out. I guess he needed that nap after all! Once I collected myself, I felt a bit (but only a bit) embarrassed for over-reacting. However, it doesn’t change the fact that if a rule is set for some reason, it should be adhered to. These poor kids are the ones who have to stay in the hospital longest, in the smallest, most cramped rooms. They don’t have a playroom to go to and cannot receive visitors. They are not allowed off the floor most of the time, and barely get to see the light of day. It is a sad, sad place to be and desperately needs a renovation and some new ideas for how to keep these kids occupied and happy. Playing Bingo on a certain TV channel just doesn’t cut it.
All of these things were in my mind as I thought about being turned away from Starlight and being forced to spend the next two weeks in lock-up. Yes, it has to be this way. Yes, it’s nobody’s fault. But I’m still deeply annoyed.
Gav ended up having a long sleep after the Starlight debacle and I snuck out in the early evening to head to my first yoga class in four months. Wow, a lot harder than it used to be! Now just packing up Gavin’s laundry for the journey into isolation. Praying for no more nausea, but apparently we’re still going through the worst of it. Yikes.