Daycare or Dialysis
A while back, I wrote a post explaining how there are no right or wrong decisions in this medically complex life. There are just better decisions than others, and the best you can do is weigh out risks and benefits. This couldn’t be more true today. While I lead a cushy privileged life, it doesn’t cancel out pain, heartache, and having to make difficult decisions. The last really big decision we had to make was temporarily separating our family this year, so that we can have more control over our schedule in the future. This week, we gained new knowledge that changed our plans yet again.
One of the factors in deciding to do long distance, was knowing that I would have help in the form of a Pediatric Special Needs daycare. It’s been a blessing being able to bring my son there whenever I need. He would be extremely well cared for, and I would be able to work. Win-Win. Things were running pretty smoothly, until they weren’t.
What started as an overnight cough, ended with yet another hospital admission. Same course of symptoms as the past few admissions, coughing and fever escalating into full blown respiratory distress within hours. Hours! We have been on a preventive routine, operating under the assumption that he was more asthmatic, but clearly that didn’t do the trick. After more digging, and more appointments, we learned that Oskie is immunodeficient. His airway is most likely smaller than normal - just as everything about him is. (He’s in the 0.1 percentile on the growth chart compared to your average 2 and a half year old. He proportional to himself, so it’s not quite obvious until you see it on the chart.) When he gets a virus, like the common cold, his lungs swell around his already small airway, straining his ability to breathe. When he loses oxygen due to this swelling, he loses it everywhere - including to his vital organs, which are already compromised. The only thing to reduce the swelling is steroid use. Long term steroid use has pretty nasty side effects, and could even lead to the need for dialysis or a kidney transplant unless we do as much as possible to prevent these respiratory episodes.
I can’t un-know this information. All I can do is use it to improve my son’s quality of live, and decrease his exposure to viruses.
So, what does this mean? Well, to me, it feels like this: Daycare? Or Dialysis?
If I keep him in daycare, he’s exposed to more germs and viruses, and his immune system isn’t ready to fight them off. He’ll see more hospital days, and each one of those stays puts up back a few steps in therapy, weight gain, and mental / emotional health — not to mention the damage being done to his cells.
I can’t, in good conscience, keep him in daycare just because I want to go back to work. It makes no sense. There is no “decision” to be made, really. It is what it is.
Is it hard to swallow? Yes. Is it isolating? Hell yes. It is overwhelming? Yep.
It’s gonna be a one minute, one hour, one day at a time kind of year. I know I’m not alone in this, there are many children who are chronically and critically ill, and their parents face similar hurdles. But, for now, I’m gonna allow myself a bit of a pity party, and just get through it. It’s not hard to get a smile on my face — I mean, have you seen my kid? The cutest!