It’s been 16 days since Danny’s transplant. I’ve been waiting to post an update, hoping for some really great news to share. But we’re still “in the thick of it” as his doctors say.
Presently, Danny is in the ICU. They moved him down here yesterday. He’s in stable condition.
Danny was having a pretty textbook post-transplant recovery, consisting of mucositis, upset stomach, fatigue, and a nasty little condition called hand-foot syndrome. He also had (and still has) an infection known as BK virus. It’s not uncommon for latent viruses like BK to “wake up” post-transplant. It is estimated that up to 80% of the population has a latent form of BK virus. Additionally, Danny has a bacterial infection for which he’s receiving antibiotics.
The doctors have jumped on every side effect that popped up with the appropriate treatment, but two things caused them concern:
- The mucositis became very severe with sores and inflammation in his mouth and down his esophagus. It created thick secretions that made it challenging for Danny to breathe comfortably.
- We started to see some neurological symptoms, like tremors, confusion, agitation, and eventually non-responsiveness.
As the neurological symptoms progressed, many diagnostics were performed to determine the cause of these symptoms. A number of things could have been the root cause, from medication toxicity to infection. Blood cultures, CT scans, MRIs, ultrasounds… we did all of it. To date, everything has come back as “normal” or “unremarkable”. That’s good news, but it’s also frustrating because we don’t have an answer to know how to treat Danny.
Meanwhile, the mucositis presented a risk of aspiration, meaning that some of the thick secretions could end up in Danny’s airway and/or lungs.
To make Danny more comfortable and allow his body to rest, the decision was made to sedate and intubate him. Instead of expending energy on constant tremoring and working extra hard to breathe, he can rest and allow his body to recover. Also, the mucositis made it impossible for Danny to eat or even drink, so he now also has a feeding tube to deliver nutrients right into his body.
While this is far from the recovery we hoped for, I remain optimistic that Danny is channeling his inner warrior to conquer this beast. But still send all those good thoughts, prayers, and energy our way!! Now is the time to throw in some extra prayers and call in any favors with the higher power of your choice.
Later this evening, Danny will undergo a lumbar puncture. This will help determine if he could be fighting an infection in his CNS (central nervous system). Stay tuned.
I’ve been asking for signs to let me know that Danny will be okay. This morning, I got one. A very special and precious gift arrived on my back patio overnight. I couldn’t believe my eyes when I looked out our glass-sliding door in the living room to see the tiniest and most adorable creature…
This sweet baby is no more than a day old. I’m confident that mama will come back after she has eaten and rested. In the meantime, I’ve closed all the blinds on the back of the house so as to not spook the baby or mother with any movement. It also makes the fawn out of sight and out of mind for our cat Emmett (who really just wants to snuggle up with the baby).
I looked up what it means, spiritually speaking, when a person sees a fawn, and while there are different interpretations, depending on the culture, I’ve decided to go with this one:
“The Fawn deer appears in our lives as a message that you will find that the incessant worries you have today will not be as prevalent tomorrow.”
Maybe I’ll get another, even better gift, tomorrow.
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