24 hours after the last update and the picture seems clearer and, as of now, in a more positive direction.
Yesterday sucked. We’ve seen Noah sick, puking, low energy and such throughout the rounds but, all things considered, his treatments have gone about as well as you can ask for. This is the first time he’s caught a bacterial infection and the fever and headache have been intense.
The worst six hour period we’ve seen thus far was yesterday starting just before the CT scan. The trip down there, waiting in a wide open bay, and then moving around for the scan was particularly difficult to watch and I can’t imagine how bad he felt through it. That CT scan came back negative. I don’t think this surprised anyone, but they also don’t just order those things willy-nilly because you don’t want to miss on detection of a bleed. Chest imaging also came out clean.
He spent another couple hours in considerable discomfort before I think his body just gave way to some rest. The fever persisted and, since he couldn’t keep anything down, we suspect he wasn’t getting a full dose of Tylenol. Around 6:00pm yesterday, the temperature was all the way up above 105 with low blood pressure, high heart rate, and significant mottling of the skin. As such, it looked like he might be on a track to sepsis and in the ICU.
It apparently takes a bit of “making a case”, but staff were able to switch to IV Tylenol. Additionally, he received a “bolus” of fluids. He’s been getting 100mL of fluids each hour, but the bolus was 700mL in a single hour. Thankfully, an hour later that temperature was down to a normal range which was a massive relief.
He was monitored closely last night to see if the fever and blood pressure could be controlled. He was what they call a “watcher”, which means he might end up in the ICU during the night. As it happened, he successfully got through the night in this room. It seems the fever keeps spiking, but the Tylenol is able to take it down for a period. He gets that every 6 hours and has gotten to a normal range after about an hour, gets a couple “good” hours, and then the fever gets back up around 103. There is also an option to get chewable ibuprofen if the Tylenol doesn’t cut it. That carries risk as it thins blood, which is not a good mix with low platelets already struggling to clot blood. Thus far, we’ve been able to avoid the ibuprofen as well as any narcotics for headache/pain management.
And then a short time ago they were able to detect the specific strain of bacteria. It is Strep mitis, a normal bacteria that lives in the mouth and GI tract. Typically a mucus lining keeps that in check, but cytarabine damages that lining which gives the bacteria a direct pathway into the bloodstream. Couple that with no immune system and you’ve got a bad time.
As mentioned previously, the vancomycin and cefepime were already what would be used to destroy the bacteria and that likely doesn’t change. Now that they’ve grown the bacteria they can do susceptibility testing on it to see which drugs it is and isn’t resistant to. Cefepime is typically the go-to drug for Strep mitis but, like all living things that replicate/reproduce, mutations can change what things it’s resistant or susceptible to. That testing is not done yet but, I think, will likely just guide whether there is, for example, less or more of vancomycin.
So the trend is better, but even as I was typing this up, he vomited and a fever is spiking to 103 as we approach the next dose of Tylenol. We’ll be watching the fever curve and the hope is that these spikes gradually become less, um, spikey, and that he can start eating and drinking — and keeping it down.
In the labs this morning we see the first sign of some neutrophils coupled with monocytes. That’s a good thing, but the white blood count is so low that it’s also fairly negligible. Any white blood cells that are in the bloodstream are quickly commandeered to fight the bacteria so it slows down the whole count recovery process. Even so, if he was going to get this bacteria, it’s better to do so as count recovery is starting rather than a week ago at the nadir of counts. Platelets and hemoglobin keep taking hits and he received his second red blood cell transfusion of the round this morning.
Beyond the clinical part of looking for Noah to feel better, the thing I’ll be most curious about is the results of the susceptibility testing just to rule out something with unique drug resistance. Additionally, samples were taken today and they’ll start trying to grow more cultures. There’s always the chance yet another bacteria appears, but this will also inform whether the growth is slower with these samples. Slower growth would typically mean that the drugs are doing damage to the bacteria.
We’re not out of the woods, but I can tell you I feel a heck of a lot better about the situation than I did 24 hours ago. At least part of this is that we’ve just been real lucky avoiding a bacterial infection thus far so this is all new to us. ID (Infectious Disease) told us that it basically doesn’t happen for AML patients to avoid an infection through all five rounds. I guess we eventually obeyed that tradition. We’ll see how some of this testing comes out but, on its face, this is a relatively better bacteria to be dealing with when you’ve got no immune system.
That’s all for now. We love you all and over and out.