The inevitable happened... Nate had a fever that sent us back to the hospital. BMT patients cannot mess around if there are any signs of a virus or infection, especially in those precious early months just post transplant. I figured this was a "cross it off the list" sort of moment because, as much as I didn't want him to be re-admitted, I knew the possibility was there. It seemed that there were a variety of complicating factors that lead to his fever. First off, he started a new anti viral medicine (Foscarnet) last week resulted in some unexpected side effects... complete loss of appetite, vomiting, generally feeling yucky. Add to that a small case of sinusitis and an overgrowth of mucous in his airway and here we are. He had several blood cultures taken and a CT scan and thankfully there is nothing more that is causing his issues, no fungus in his system or bacteria in his blood or unexpected viruses and only a small spot of concern on his lungs that is really not much of a concern at all. He did start two new antibiotics to help clear the infection from his body and he is doing well today. Still vomiting or spitting up mucous (often times with some blood) and some random low grade fevers but very well all things considered. I really dislike this part of his treatment, the having to treat the effects of the treatment. But it's reality and I'm not going to sugar coat it. He is back on IV nutrition (TPN) for the time being because he is not eating. This should resolve once the Foscarnet is gone in a couple of weeks, sooner if he begins to eat again. And of course the IV nutrition adds additional stress to his liver and kidneys, and his kidneys are already being closely monitored due to being on two nephrotoxic medications simultaneously. But, like I said, this is his life right now. Tear him down then we can built him back up later. He has a very rare form of an already rare disease (if aplastic anemia is 1 in a million then auto immune hepatitis associated aplastic anemia is maybe 1 in 20 million, with only a handful of cases each year) and just to be close to a team of doctors who truly understand it and know how to treat him is hugely reassuring. This is what needs to happen for him to heal, it's unfortunate but very true so to resent the disease or it's treatment is pure futility. I focus on healing instead, being thankful for the antiviral med because, even thought it is making him feel very sick, it also got rid of a virus that had potential to be far more harmful. Being thankful for having access to IV nutrition because he needs some nutrition to heal, even if it is suboptimal and further stresses his body. It's hard to not hate the disease but truly I do not because it serves no purpose. To put energy into hate is still energy and I have none to spare on negativity even if it's very justified. Instead I choose to count our many many blessings and put my energy into love. As with all things in life, this is temporary.
So now we wait... make sure the HHV6 virus is completely gone so we can reduce his anti viral dose... make sure his mucous and sinusitis is improving... and most importantly, get those cells ready to give him a little boost. We should be discharged Monday or Tuesday. Have I mentioned how much I dislike waiting? Ah well, I guess I need to reframe that too, as I am also thankful that we have the luxury of time and that he still remains remarkably healthy despite everything.
While we sit here and do all this waiting, I am spending my time reflecting on what our family has been through, continuing to count our blessings, making future plans and gathering ideas to make 2015 an epic fun year for our family because we all deserve it.
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