Best news is we have been moved to HDU (High dependency unit). This is a step down from PICU, but not quite back on the ward, where we want to be. He is on a lot less oxygen, and coughing less. He walked about 20 yards (he still needs portable O2 to do anything). After not eating for many hours, he just devoured some disgusting looking chicken nuggets. Some Cambridge United players came to see kids on the ward and gave him a goodie bag, put the first smile on his face today! But for 24 hours now he has had a constant fever and has been sick a few times. The fever is new, and worrying. And due to the sickness, he is refusing to take his Parvolex (a drug which helps protect his liver from the powerful antibiotics), which isn't altogether surprising; nausea + drinking the smell of rotten egg don't really mix.
We also lost the cannulla last night as it tissued (the drugs started to enter the subcutaneous tissue instead of the vein). This meant we needed a new IV line as soon as possible, but Isaac quite rightly wanted to have the long-line that he had been promised (which should last weeks) rather than more peripheral lines (which may only last a day, so would need repeating). Due to the number of IVs he has had over the years he has limited good veins left, and doesn't want to bugger them up more with short-lived peripherals, as once a vein is used, it's temporarily or permenantly a no-goer for more venous access. He is so brave getting lines, but no one fancies repeated stabbings, and he has been promised a long-line everyday since day 2 when we tried to get one in but failed (now on day 8). This caused a bit of friction - PICU/HDU policy is to insert long lines under sedation or in theatre. His usual way on the ward is awake on entinox (laughing gas), which is also safer for him (best to avoid sedation and anaesthetics when your breathing is impaired). Seems crazy, but it seemed policy would mean we needed to get back to the normal ward to have the long-line put in; but they had no beds. Hours passed. In the meantime, missing IV doses increased the risk that the bugs could become resistant to the antibiotics. Finally common sense prevailed and the lovely, straight talking Dr B agreed that Isaac's preferred way was what would be best for him, to sod the fucking policy, and make it happen. He couldn't believe Isaac had been made to wait so long.
I have learnt the hard way over the last 12 years to not always sit back and accept what it laid out before us in terms of his care. By nature I avoid confrontation at all costs. That very British politeness is ingrained in me. But it is our job to be his champion, and in this case, his request was not only reasonable, but also better for his veins long term. One doctor from PICU (who I thought was quite short with me earlier) just came to tell me that I was doing a great job, defending my boy and his best interests. There is a massive role for a parent on children's wards, yet sadly, I see many babies and children with no family around them. Isaac has also had 12 years of this - he complains so little, that if he wants to have a long line (a much longer and more painful process) rather than a peripheral line (quick and easy), then credit to him, and I'll fight for that.
So definite steps forward, but not without frustrations too. Right now Dan is doing the nights, and me the days. This sounds cruel, but he sleeps better on a chair than I do, and I need to be there in the day, as I need to talk to the doctors, be there for the tests and invasive procedures, and ask about the plan. I quickly feel out of control if I don't know what's going on.
I feel frazzled. I am running on adrenaline. When I sleep, it's with vivid and weird dreams. I constantly feel on edge and can't shake off my shake. And on top of this, I need to come home and be a half way decent parent to two worried girls. Not sure I am succeeding on that front sadly.
Doodling my frustrations out.
