We are starting to think Hope doesn’t want to go to the lake. It seems that she gets stricken with some virus every time we try to go down. We had planned on spending a whole week at the lake relaxing and boating with our babe, but Miss Hope decided that was not going to work for her. It all started with a seemingly benign case of diaper rash on Wednesday evening. We headed to the lake Thursday night excited to start our vacation. After a day of treating with rash ointment, we decided to call her transplant team and our pediatrician and a prescription rash ointment was called in. No sooner had we returned from the store did I accidentally pull her G-tube All.The.Way.Out! So we packed pack up and went to the tiny medical center in Leitchfield, KY, hoping they’d be able to help us put it back in. We have never done this at home and completely forgot the kit that would have let us take care of this on our own at home. Luckily, they had the right type of syringe that allows you to deflate and inflate the balloon and we were able to get it put back in place. As luck would have it, I was also concerned about some blisters on her chin and the doctor in the ER shared my concerns. He suspected impetigo, but said we should apply an antibacterial ointment and follow up with our transplant team if it gets any worse. We went home and even managed to get a little boat ride in with Miss Hope before the rash overtook her arms and legs.
Well it got worse. Way worse. What started as a few dots on her chin and a handful of dots on her ams and thighs blossomed in 48 hours to a horribly inflamed rash covering her legs from ankle to butt, her arms from wrist to shoulder and all over her face – even in her nose and ears! The transplant team told us to get our butts in the car and get back to Cincinnati stat! Apparently, kids who are immunocompromised are at an increased risk for a skin rash to turn septic quickly and they need to be monitored inpatient until they are out of the woods. Boy did that light a fire to get back home fast!
At this point we still didn’t know what the hell the rash was because it wasn’t fitting any of the classic presentations of the most common rashes. The culprit was quite mysterious because of her immunosuppressed state. The palms of her feet and hands and inside her mouth had no sores so we didn’t think hand, foot and mouth. Chicken pox typically shows up on the trunk and her trunk was spotless. It was weird and weird is never good with this girl. When we got to the ER there was someone waiting to take us back to a private room immediately so that whatever this weird rash was didn’t spread around the ER to other kids. Apparently, contagious rashes are all you need to be handled like a VIP in the ER. Who knew?
The ER doc and the Infections Disease doc both suspected a “super-strain” of chicken pox, which might explain the unusual presentation. They took some blood and skin scrapings (which Hope was just thrilled about) and we had to wait about a day for the results so we were admitted to a room to wait. Hope was on extremely high precautions with the nurses and docs wearing separate air masks so they weren’t breathing the same air and we were in a negative pressure room so her room air doesn’t recirculate. I was also told that the door had to stay shut and I should limit my comings and goings and avoid common areas in the unit (like the kitchen) and avoid anyone unvaccinated or pregnant. This was supposed to be vacation and instead we were in jail in her room! The comical thing was that doctors were peaking in to take a look because many of them haven’t seen very many cases of chicken pox medically and there was a giddy kind of curiosity and lots of “hmmm, interesting. Yep, that’s chicken pox…” comments. Hope just settled in with her toys and tried to find a comfortable position, which was challenging. She is normally a champion sleeper, but this had her up in a fit of tears every few hours.
You might be asking how the hell she could have gotten chicken pox when there’s a vaccine for it that has almost eradicated it. Unvaccinated kids. Their parents don’t understand that getting your children vaccinated also serves a second purpose – in addition to protecting your own child it also protects kids like Hope who cannot be vaccinated. That’s a tangent for another day, I suppose.
After 24 hours fretting that she had some weird super strain of chicken pox the tests finally came back and NO Chicken pox!!! Wooo hoo! She was also negative for HSV (common cold sore virus). It was a big relief because those two viruses can have some pretty scary complications, like meningitis. But now we were left wondering what the hell this was!
A short time later a third test came back and it was positive – Hand, Foot & Mouth claims another victim. It didn’t present normally because of Hope’s immunocompromised state and basically covered her limbs from toe to finger in blisters. For anyone who is lucky enough to have no idea what this disease normally looks like, it typically shows up as blisters on the soles of feet, palms of the hand and in the mouth. For Hope, it went everywhere but there and her trunk, which made it so hard to diagnose visually. The bummer is that there isn’t anything to do to help her get over it so they observed her for another day and then sent us home. We need to stay close to the hospital for the next week or two just in case there are any other complications. Most kids are over this in 3-7 days, but Hope may be contagious and shed the virus for up to several weeks. So we’re just going to be hibernating trying not to pass this horrible little contagion on to any other little kiddos or adults. So much for vacation!