It’s difficult being the parent of a child with a complex medical condition in today’s day and age. I have access to endless information about an endless number of things, but very little access to the physician(s) who really know what’s going on with my child.
This week I’ve been driven to distraction about the side effects that Ana’s experiencing on Prednisone. Her enzyme levels are stable (although one is actually slightly elevated) so they don’t want to reduce the prednisone yet. It took about four emails to get this explanation though – at first we were just told to keep her at the same level of prednisone this week. But Ana got a urine test at her local doctor’s office yesterday (we were afraid she might have a UTI) which showed sugar in her urine.
Now, I don’t know about you, but when I hear that my child has sugar in her urine, I FREAK THE HELL OUT. I immediately flashed back to pre-transplant days, when Ana was on 60 mg of prednisone per day, couldn’t stop eating, had trouble sleeping, was up 5x a night going to the bathroom and OH YEAH, had blood sugar that was above 200 and had to be weaned off the steroid (or start insulin).
This morning I sent an email to Tara and Dr. Martinez listing out my concerns (again) about these side effects, and asking outright why (if her enymes were stable) they couldn’t again reduce the steroid? It really went against all my instincts of polite gratitude and deferment to their professional expertise. But, then I thought, what can I do? I have concerns. I am her mother. I’m not THAT pushy, right? Right???
It is a balance here – I don’t want them to make decisions because I’m pushing them (I trust Dr. Martinez won’t do that – she’s tough and brilliant). On the other hand, I am the one with a front row seat to Ana’s day-to-day physical condition. I am also the one with her full history – she wasn’t being seen by Dr. Martinez when she was getting all those steroid side effects back in November.
So, ultimately, the decision was made to keep her on the same level of prednisone and increase her tacro (again!) because the tacro level is still lower than they’d like. Her blood sugar is 150 based on Monday’s labs which is below the danger zone (apparently). I’m not thrilled, but what can I do? It just feels like more and more and more drugs.
Doctors probably don’t realize how helpless we feel – sitting out hear on the sidelines while they order tests, medications and procedures that have such a huge impact on our lives. There are overwhelming obstacles in the healthcare system that complicate the simplest of things – just having a conversation with Dr. Martinez about my concerns feels like a huge achievement.
There are switches in place – barriers to good communication – insurance hurdles that crop up and become big obstacles.
Where am I going with this? I don’t know. I think some of it is that I want to share what I’m learning about being Ana’s advocate. Everyone who is seriously ill should have an advocate – not just children. I feel like the healthcare system is built to manage routine things really well – annual health screenings and the common cold, for example. Some things are easy – seamless. But when you’re dealing with a 12 year old who has had cancer and a liver transplant, suddenly the machine starts to smoke. Jim and I are the ones tinkering with it – making sure it works – the right doctors are talking to each other, the medications are ordered and the insurance company isn’t denying the care that Ana needs. And it’s not like we’re medically trained!
This isn’t really me complaining. I don’t (usually) feel beaten down about the things I need to know to ensure that Ana gets the treatment she needs to survive. But, I will admit to constantly being incredulous about how complicated it all is and how difficult it can be to get some of the simplest questions answered.