Oh, joy. Micah has what appears to be a staph infection. Let me lay down the history. It started overnight Saturday. He moaned all.night.long. He seemed okay Sunday morning, though, so we headed to church (to say the roads were icy would be an understatement!). Micah started wretching with his lunch. Here we go...
Sick puppy Sunday evening. Another night of moaning. Fever of 101 when not on tylenol. Off to the pediatrician on Monday morning because I was a bit concerned. Micah's regular ped was out that day, so we saw Dr. M.
Micah's g-tube site was a bit red, but nothing outlandish. Ears fine. But his throat? Not so much (red spots... looked like strep). Labs run... CBC within normal range, but looking like he might be fighting some sort of bacterial infection. Strangely, the strep culture came back negative. I tried to hydrate him with pedialite through his g-tube all day, but we were definitely "behind on fluids." His stoma site started leaking mid-afternoon. Basically, when I pushed fluids in, some of it was leaking around his tube site. Bad memory of that one (remember April, anyone?). So, off to the ER for IV fluids.
ER doc (who trained at Children's of WI, just like Dr. H who saved Micah's life in the ER and PICU back in April) ordered x-rays to see if there was something wrong with his tube placement (side note: I so wish I had brought the x-ray orders for Micah's spine x-rays to check for AAI... it would have been fairly easy to get those done during this trip because he was so wiped out he didn't challenge anything in radiology). Doc also ordered the IV fluids and ran blood cultures (didn't hear anything back from that... I'll check on those on Friday). I expressed concern over the challenge of getting an IV into Micah (his last overnight stay at the end of September resulted in him actually not getting an IV because they couldn't get a vein). Micah's nurse called in an experienced pro, Lois, and she got a line into him on the first shot (it wouldn't have worked with a mobile kid... she put it in the top of his foot... but hey, whatever works).
We were out of there in about five hours, which I guess isn't bad, but it's still draining. Micah slept most of the night, only waking once, which is better sleep than he often gets when he's healthy! We pushed him through yesterday, trying to stay on target with fluids.
All day yesterday I had noticed that when I looked directly down on mic-key button, it appeared that there was brown stuff inside his stomach. So Mark and I decided to take out his button, clean it off a bit, and put it back in. The button was fairly new (I changed it out a couple of weeks ago) and I hadn't ordered a new spare yet so we couldn't change it out, but we wanted to see what was going on. Probably TMI here, but brownish goo oozed out when we took out the button. Rut ro.
Called the pediatrician this morning and mentioned the brown goo and that the inside corner of his right eye was red. Quick trip to the pediatrician turned a bit longer than expected. For one thing, there was a 2nd year med student with her (it's the second time I've met a medical student who was shadowing her... I love that she does this... and I especially appreciated her telling the medical student that Micah's medical issues were not the norm with Down syndrome). She was planning to look at his g-tube site after checking his ears. While looking at his ears, she noticed that he had a little rash with white bumps above his left ear. I had seen it the day before, but I figured it was his skin reacting to the haircut he had gotten on Saturday. As soon as she saw that little area above his ear, she proclaimed, "That's staph." She said that explained the eye thing, the little red bump on his cheek, and the goo around the tube site. I also told her that he was sporting a red rash on his belly when we were in the ER on Monday. The look on her face was almost horror. Or was it disgust that the ER doc didn't do more investigating?
Quick finger prick showed an elevated white count. So, before we left the pediatrician, the nurses made a solid effort to get blood drawn for a culture. No way, no how. They asked Dr. B how to proceed. Ultimately, it made the most sense to get rocephin (an antibiotic) on board, so he got a shot. Tomorrow he starts two weeks of augmentin. She cultured around his tube site, so we're hoping that comes back and shows us exactly what we're dealing with. Please pray that it's not MRSA (the antibiotic-resistant form of staph). That would require a sulfa-based antibiotic and I'm terribly allergic to those, as is my father, and I'd rather not experiment with Micah's ability to tolerate those drugs. Likely port of entry for this round of staph is his g-tube site (stoma). This is a great example of my love-hate relationship with his feeding tube. Glad it exists... keeps him alive. But then this junk happens.
Micah has a LOT of sinus drainage going on (which was the other reason she chose augmentin because that would fight a sinus infection). I think his tonsils (that obstruct 80% of his airway) make dealing with sinus drainage super uncomfortable for Micah. He's been drooling all day (I think his throat hurts). And he's woken a lot already this evening, primarily due to the sinus stuff, I think. This drainage is an even bigger problem for him, as his swallow reflex is still being developed.
We had been planning on a long drive to our family farms in SE Missouri this week. We miss my family very much, but we're very thankful that Micah got sick BEFORE we left and not while we were down there. We would have been over 3 hours from St. Louis Children's.
Sorry to bore you with all the medical stuff. I'm sure that Micah's immunologist is going to ask me all about this and it's very helpful for me to be able to just point her here rather than me trying to remember all this when we see her in March.
Happy Thanksgiving, everyone. We have much for which to give thanks.
Suspense by Rachel Dylan
5 weeks ago