More Updates

Andrew is still stable. They have gradually decreased his oxygen percentage to 40% (room oxygen is 21%), but the pressure is still at 8 liters/minute. This makes Andrew very uncomfortable. We're two steps from intubation, but it seems like although Andrew is still respiring at 60+ breaths/minute, he's kept his blood gases stable. His chest x-ray from this morning shows that his lungs are still full of fluid, but there haven't been any dramatic changes in that department.

I won't sugar coat the fact that he's pretty miserable, and so tired of breathing so fast. He has barely kept anything down, and he's maxed out on anti-emetics. Dermatology came by this morning to biopsy his rash (did I mention he developed a rash? it's more like red spots). The main hypothesis is that it is a fungal infection on his skin (which can easily happen with neutropenic kids), or it may just be a drug reaction to his antibiotics. The dermatology people say it looks more like a fungal rash than a drug reaction. They told me they were really sorry, but they'd have to do two spots instead of one because they often need 2 samples, and they really didn't want to put him through that again. Okay, sounds good. She injected him with lidocaine, took a 3mm diameter cutter thingy and went all the way down to his fat. It was a sizeable chunk of skin for a little guy, and it's deep enough and bleeds enough that they needed to put in a stitch. This is the absolute most they do without actually putting him under. It's such a sad thing to see hold him down and inflict pain because he doesn't know that it's actually a good thing, and he's not old enough that I can tell him to be brave or anything. Since then, he's cried every time someone draws from his line, changes his caps, or listens to his heart or lungs, which he has never done before. He is truly traumatized. I was glad it was all over with so we could just get answers.

He's NPO right now (nothing orally except his oral meds) because of the risk of aspiration that comes with such a high-flow nasal cannula, so I have to pump exclusively (I'm planning on nursing until he's no longer immunocompromised). It's nice to have a little break here and there and just get a breather. This afternoon I took a quick break and when I came back, Andrew was screaming his head off and the dermatologist was stitching up yet another biopsy. What the??? One of the oncologists (not the infectious disease people, or even the dermatologist) had ordered yet another biopsy. She insisted that it was necessary and it had to be done right now. Come to find out, only one of the two other samples had been analyzed, the first sample being negative for fungus. Andrew has had high fevers and has really struggled to breathe all day, and a fungal rash is truly the last thing on my mind. I still don't see why this biopsy was necessary (the first two they put in formalin, this one was supposed to grow a culture), but right now, I care a whole heck of a lot more about his comfort than a stupid sample. Even if it did come back positive for a fungus, they most likely wouldn't change his meds. I haven't gotten this angry/upset/flustered for a long, long time.

It was ironic that this happened because I had just convinced the attending not an hour before to not do a peripheral blood culture (i.e. a venous poke) because, frankly, it doesn't make sense at this point in time (it would have made sense when he first had a fever). If he had the infection harboring in his line, a culture drawn from it will show it. If the peripheral culture and the line culture are both negative, it doesn't get us any more useful information. I'm fine with other pokes like cap gases, etc, but these two just did not make sense for trying to make him get better. As one of our friends who lost their little girl last January told me, the motto of the hospital really is the child first and always. The child's interests reign supreme. I am no longer worried about offending residents, nurses, and even seasoned doctors if it means that my child has to go through less pain. It took a while, but I have become much more assertive in asking why exactly are you doing it, and what's it going to show you? Can you wait? I need to calm him down, etc. Because these people don't know Andrew, it's even more important to ask these questions because I know his history the best.

Even with all the misery, I know that it's good that we're down here. Although I feel less comfortable with the nurses down here because they aren't as familiar with Andrew, I breathe easier knowing that he's monitored very extensively. However, I have noticed more alarm fatigue down here in the ICU than up in our ICS townhouse. I am happy they let me sleep in the same room, because even if they don't notice something, I will. After today, I am even more crazy about staying with him all the time.

The other thing that's been really upsetting to me today is that I can't go to Tanner's funeral. I really love funerals not just because of the closure aspect, but because I love the idea of gathering together and celebrating a person's life. I really wanted to be there for his parents, and learn more about the kind of person Tanner was. I can only surmise what kind of a person he was from knowing his parents, and I am sad I can't honor his memory by being there.

Thanks again for the faith and prayers. I really need them. Even with the extreme sleep deprivation and stressful times, I know I am being supported because normally I would have stopped being able to function by now. There's not much that many of you can do for us right now but what you have already been doing. Thank you.