bracing for bumps

On our last trip home, before we entered the BMT unit, Caemon discovered he doesn’t like riding over railroad tracks. I made the mistake of taking him to see the lights downtown where we live, and to get there, we had to cross a couple of sets of railroad tracks. They upset him terribly–in part because he didn’t like the feeling of them and in part because they scared him; they were unexpected. He has made me promise not to go over bumps, and he has talked with me about different types of bumps. He is worried that I walk over railroad tracks when I cross the street to the family guest house. Any time I go home, he asks if I have driven over the railroad tracks. Those bumps clearly left an impression.

I can honestly say that I’m not a big fan of bumps either, but as I came home yesterday from preparing the house for Caemon’s homecoming, I found myself going over one. A blood culture of Caemon’s came back positive for staph infection. He had spiked a fever. He was retaining fluid, not eating, and was having a fair amount of abdominal pain. There was worry of VOD rearing its head again. Something was eating up his platelets. We have what I would consider to be a genuinely annoying bump right now–one that is a little scary, a little bothersome, and something we all would rather have avoided.

Today, Caemon spent a lot of the day battling a very painful diaper rash and doing everything he could to keep anything inside his body from touching the diaper rash. It seems his will power works both ways, so once again he is causing himself incredible discomfort all to avoid the pain of a bodily function.

Today he showed some progress in a number of areas, and the blood cultures taken from his central line and from his veins (they had to poke the poor guy) haven’t shown any sign of further infection, so we are hoping this resolves as just a contaminated lab sample. Still, it’s such a mystery what is happening in his body, and we’re hoping to find some answers soon.

Wednesday, we have Caemon’s first post-transplant bone marrow biopsy. He will have to go under general anesthesia, and we’ll learn a bit about what is happening in his marrow, how much of the marrow is his donor’s, and whether the mutation for JMML is still present. While we are hoping for the absolute best, it’s hard not to take a little walk down those darker paths. I don’t want any such news, and the chances are good we won’t be getting bad news. My hope is that we’re going to hear that his marrow continues to be sluggish, that it’s taking its time to set up house, but that it’s the donor’s and it’s JMML-free.

Tonight, Caemon started to look a bit like himself again after losing some of the fluid he had retained. All day, his face had been so puffed up that his eyes were little slits, but his eyes started to emerge again, the rest of his body started to shrink a bit too, and as he felt a little better, he requested food and ate almost half of a baked potato. He even giggled. It was a better night, and I think tomorrow will be an improvement as well because this is indeed one of those annoying, surprising bumps, something that slows us down a bit, keeps us from cruising along at our preferred speed, and keeps us on high alert for any other bumps in our paths. We’re going to have these now, and we’ll have them when we go back home. The trick is in remembering that a bump does not signal the end of a journey. It typically doesn’t even throw one off course. It’s a nuisance yes, something we’d rather avoid, but we’re still moving full speed ahead toward our destination: a life outside of this hospital with a vibrant, healthy little boy. I just need to quiet that inner child who keeps tugging at my sleeve and asking, “Are we there yet?”

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2 thoughts on “bracing for bumps

  1. Ali

    Once again, a beautiful, apt metaphor to explain what all of this feels like to your family. Hoping for fewer and fewer bumps with each passing day.

    Reply

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