Okay class, listen up. Today has been a crap day. That’s right, I said crap day.
Honestly, it’s been worse than crap, but this is a family show, so I’ll leave it at CRAP.
I try very hard not to be all gloom and doom when it comes to Capt Snuggles and his various ailments. Various, mind you, as if one just wasn’t enough. But some days the doom and gloom take over and it’s all I can do not to scream.
So if you’re arriving late to the show, I’ll give you a brief run-down. The Captain had a liver transplant back in mid-August. Directly after the transplant he caught a virus called Adeno and then he developed Graph vs Host Disease. We’ve been in the PICU for 3+ months fighting both of these bad boys.
Last week he was out of bed, laughing at his Occupational Therapist.
Today, not so much. Today he was feeling yucky. Today his rash spread. Right before our eyes, like wildfire. The GVHD went from being only on his hands and feet to, well, everywhere. Scalp, forehead, mouth (yes,even inside his mouth), belly, back, arms, legs, even the poor lad’s bum. EVERYWHERE.
So a decision was made.
A decision they tried to postpone. A decision that is irrevocable.
A decision that has me up and awake in his room at 2am because it’s already put his little body through hell.
It’s name is Campath. And it wreaks havoc on the immune system.
Campath specifically targets lymphocytes, which are a type of white blood cell. It does not differentiate between the good (his) lymphocytes and the bad (his donor’s). It is an equal opportunity killer.
Up until now they have been giving him meds that kill specific types of lymphocytes. T-cells, B-cells, activated T-cells, cells that control the activation of T-cells, B-cells that dance with the T-cells under the pale moonlight and on and on and on. Yes, the lymphocytes can be divided into more cell types than you can shake a stick at. Suffice to say these previous meds have not been successful in containing the GVHD.
So bring on the big guns. Think Hiroshima. It’s not a pretty picture.
The Campath was administered @ 6pm. By 6:30pm he had spiked a fever to 103.5, his heart rate was 212 and he was doing that grunty-breathing thing that earns him the high-flow nasal cannula.
He was experiencing hypercytokinemia. Or a cytokine storm. That’s a fun term. Cytokines are crazy. Imagine a mosh pit filled with teenage boys. Bumping, thumping, slapping into each other. It’s not funny until someone gets hurt kind of thing. Now imagine the cells in your body doing all that frenzied moshing. That’s a cytokine storm.
And that’s not good.
So we do what we do best. We wait.
It’ll take a couple of days to see the effects of the Campath. He may need more doses. When I watch him in his hospital crib, the term that comes to mind is languishing. Some days are better than others, some are worse. Most are stagnant.
Today would be classified as worse. The GVHD has progressed to the point of beefy blisters on his hands and feet. That just earned him an additional drug. No waiting to see if the Campath will do it’s stuff.
Add. Another. Drug. Now.
I was asked the question whether I regret opting for the liver transplant. Rather, ‘pushing’ was the term used. Did I regret pushing for a liver transplant? Obviously this person had no idea of the devastating effects of Citrullinemia. The dance of brain damage that is the life of a child dealing with that awful disorder.
I answered simply. “No.” I think the person was rather appalled at my answer, seeing only what the lad is experiencing right now. This person did not understand that the same Adeno virus that triggered the GVHD after the transplant would have caused irreparable brain damage before, in the guise of elevated ammonia levels.
I know he’s in pain, he may have scars. I know he feels yucky, but it will pass. I know he’s weak, but he’ll get stronger.
Is that Faith? I am not a subscriber to the notion of a greater power governing my life. So maybe it’s my own brand of Faith. Faith in the power of one’s own body to heal. Faith in modern medicine. Faith that I made the right decision for my son, that I did the best I could to afford him a life.
Even if he looks like Thing from the Fantastic Four.