Nico seems improved. He is smiling and laughing again. He expresses an interest in food although he does not actually eat yet. It seems we have watched Max and Ruby for about 23 hours today (OK, I’m exaggerating). But I prefer Max and Ruby to watching a pale and bloated version of my child sleep all day. His counts are still very low, however. His neutrophil count is basically holding steady at zero. So he is at high risk for a bacterial infection. His hemoglobin and hematocrit remain very low as well. He is bordering levels that historically required a blood transfusion, which we prefer to avoid. But Nico’s monocytes and platelets are increasing and this signals that his bone marrow is considering a recovery soon.
I cannot imagine that there is a nicer room in the hospital than ours. But there is really no such thing as a nice room on a pediatric oncology unit. And Nico is not allowed to leave this space. Even the best room in the house starts to feel like a prison when you cannot leave it. Nico, who definitely has at least one virus, poses a deadly risk to the other kids here. No one comes into our room without a mask, paper gown and gloves. Everything that comes into our room is treated as hazardous when it leaves. We would not recognize any of our nurses or doctors since all we have seen are their eyes. This gets tiring after a few days.
As mentioned, we are right across from the helipad. I think this is more exciting for me than for Nico. This is how I passed time over the last few days. There are a few different helicopters that land here. I am assuming I have watched at least a few different pilots come and go. I have watched long enough that I notice that each pilot flies a little differently. I do not know why. Maybe it depends on the level of urgency, purpose, the time of day or night, or just their personal style? Anyway, I would love to liken this observation to our journey through treatment, our different doctors, nurses, and how strange and nuanced healthcare actually is, but I think I am delirious from cabin fever, head congestion and lack of sleep.
Hoping for better counts tomorrow.
I cannot imagine that there is a nicer room in the hospital than ours. But there is really no such thing as a nice room on a pediatric oncology unit. And Nico is not allowed to leave this space. Even the best room in the house starts to feel like a prison when you cannot leave it. Nico, who definitely has at least one virus, poses a deadly risk to the other kids here. No one comes into our room without a mask, paper gown and gloves. Everything that comes into our room is treated as hazardous when it leaves. We would not recognize any of our nurses or doctors since all we have seen are their eyes. This gets tiring after a few days.
As mentioned, we are right across from the helipad. I think this is more exciting for me than for Nico. This is how I passed time over the last few days. There are a few different helicopters that land here. I am assuming I have watched at least a few different pilots come and go. I have watched long enough that I notice that each pilot flies a little differently. I do not know why. Maybe it depends on the level of urgency, purpose, the time of day or night, or just their personal style? Anyway, I would love to liken this observation to our journey through treatment, our different doctors, nurses, and how strange and nuanced healthcare actually is, but I think I am delirious from cabin fever, head congestion and lack of sleep.
Hoping for better counts tomorrow.
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