Wednesday, April 18, 2012

Hand, foot and what disease?

There have been 4 times in my life as a parent that my mother's intuition kicked in BIG TIME. Where I just knew doctors were wrong. In each case, I was right. I tell you these stories not to point out how great my "Mommy's Intuition" is (for how can I brag about it, since I know in each case, it was simply God prodding me?), but instead to remind us all to make sure to listen to that voice. It can be more powerful than we know.

The first time, Sierra was an infant and beyond sick and I knew something serious was wrong. But she wasn't clinically showing it to the pediatrician, so we sat by as she got sicker and sicker. It took them a week to determine that she had bacterial pneumonia - and by Day 6, it bought her a hospital stay. But I knew on Day 1 that we weren't dealing with something simple. I knew by Day 2 that she needed to be in the hospital, that it wasn't something we could handle at home. I didn't know what was wrong, but I knew something was serious.

The second time, we almost lost Bodie and I knew there had to be an explanation for why he decompensated so quickly. The CTICU docs were trying to tell me it was aspiration related. But I knew it wasn't. I KNEW there was something more. It would take him coding twice and some divine intervention for the doctors to realize his problem was low cardiac output and that he needed a pacemaker. But I knew. I didn't know what was wrong - but I knew it wasn't as simple as aspiration.

The third time, Bodie was admitted to the hospital for blood in his stool. I knew it was c-diff. I kept asking the docs if it was a tummy bug, if it was c-diff. I couldn't shake the feeling that it was. For whatever reason, Bodie's initial test was negative, so they threw that theory out the window and instead chased a milk protein intolerance theory around for a week until he had decompensated so badly that they were having to decide whether he would survive the trip from the step-down floor to the CTICU to be intubated - or whether they would have to intubate him right then and there. When he got to the CTICU, the first test they ran showed that it was indeed c-diff. I could have told them on Day 1. Oh wait - I did.

This week was the fourth time. Out of nowhere on Monday night, Bodie spiked a fever over 102. We tried to convince ourselves it was teething since he was gnawing on his binky like it was going out of style. But then he kept us up all night, coughing, whimpering and whining. By the morning, he looked TERRIBLE - red eyes, runny nose, the whole nine yards. I immediately called the pediatrician's office and got him in. His regular doc wasn't in yet, so we saw someone new. He was great and understood my concern that it might be Influenza. He checked Bodie over and determined that he had an ear infection (yes, AGAIN - if you're keeping track, that's 3 in the past 6 weeks) and some sort of infection in his throat, though he wasn't sure what (the strep test came back negative). He did a flu swab and sent us home on Amoxicillin, ear drops and Tamiflu (to be used if his symptoms worsened to the point where we really thought it was the flu).

I can't explain it, except to say that I felt like were missing part of the puzzle. I've seen Bodie with ear infections, and he's inconsolable and miserable, just like he was yesterday - but he hasn't run a fever with an ear infection since getting his tubes in September. His sats were low all day, his color was bad and he was on and off miserable and lethargic. I haven't been that worried about him in a long time. I kept waiting for the antibiotics and Tylenol/Motrin combo to kick in. By last night, he wouldn't let us get near him with meds (although he goes through phases of being more "anti-meds," most days he takes his meds without too much struggle). But it was like we'd put the meds in his mouth and he'd scream and scream until they all drooled out. Fun times. Another sleepless night and then he woke up this morning with a rash on his legs and arms. Awesome. And he started drooling. Like as in, huge giant St. Bernard, soaking everything in sight drool. I've actually never seen anything like it. (Scroll back up to the top picture as "Exhibit A" - yes, his shirt is literally soaked in drool.) 

So, back to the pediatrician we went this morning. By the time we got there, I'd actually had to change his shirt twice because he had drooled so much he'd soaked through 2. Fun times. It took one look in his mouth for her to confirm 100% that he has Hand, Foot and Mouth Disease. In the approximately 2 and 1/2 seconds that he allowed her to look in his mouth, she was able to easily see 10 blisters. Fantastic.

What is Hand, Foot and Mouth disease, you ask? I'll be honest. I had heard of it (I mean, I think every parent of a toddler has at least heard of it since it's pretty much as common as the Chicken Pox and other nasty toddler ailments), but I had never really given much thought to it. But let me tell you, IT BITES.

In the grand scheme of things, it's not that big a deal. The only thing you really have to worry about is dehydration and even if your child gets dehydrated enough to need to be hospitalized, they just give them IV fluids and once the symptoms clear enough for them to want to eat and drink again (7-10 days from what I understand), you're out of there. But the day to day living it? Ack. It is literally sucking my will to live. My resolve is wearing thin. I am exhausted. Utterly spent. I know it sounds silly to say, and I know in my mind it is nowhere near accurate to say this, but damned if this doesn't feel as hard as watching all the other crap my sweet boy has been through, which, I think we can all agree, has been a mighty big load already.

It is SO damn hard watching him just want to eat and drink and be unable to. I mean, imagine - you know what it feels like to have 1 canker sore - now multiply that by 10 and put them on the back of your mouth. So, everything you eat or drink has to pass by them. Talk about painful. Oh, and add an ear infection to the mix. Oh, and Antibiotics and their lovely side effects (yes, I'm talking about diarrhea). And he's still running a fever on and off (VERY low grade - as in, hardly breaking 100 degrees, but still there nonetheless). Oh, and you're a heart kid, so you have to get your meds in even if your throat is so sore you don't want to swallow anything. I'm having to give Bodie meds by mouth approximately 10x a day (heart meds 3x a day plus antibiotics 2x a day plus alternating Tylenol and Motrin throughout the day). Do you see why the poor kid hates me and starts screaming the second he sees me reach for the syringes? Oh, and he (and I) hasn't slept more than 30 minutes at a time in 2 days. (His poor eyes are SO red and puffy from lack of sleep.) My sole goal is forcing him to eat and drink to keep him out of the hospital. Suffice it to say, my PTSD left over from knowing we'd have to take him to the hospital if he missed 2 feeds interstage has been triggered approximately 13 million different ways by this experience. And I can expect this to continue for approximately 7-10 days (maybe less if we're super lucky)? Ah yes, now you see why I hate this seemingly innocuous Hand, Foot and Mouth Disease...

Sorry to vent. Been a rough couple of days. We switched him from oral Tylenol/Motrin to Feverall (a suppository) - not ideal, of course, but any chance I can take not to get near his mouth I will, just to give him a break. And his pediatrician recommended a crazy combination of Maalox and Benadryl that actually works well enough coating his throat that he's at least able to tolerate Popsicles without screaming. Praise God! (Again, something to have to put in his mouth via syringe, but the effects are SO worth it as it seems to have him out of the excruciating pain for at least a couple of hours).

So yes, I know in the grand scheme of things, this is NOT THAT BIG A DEAL. He is home. He is thriving. This should not affect his heart function. He should be past this with no long term repercussions fairly quickly. BUT it is often hard to remember that as you're going through it. If you could keep us in your prayers in the meantime, as we go through it, we would really appreciate it. Please pray specifically that (i) the sores heal at lightening speed so that he can tolerate drinking again, (ii) his body settles into the antibiotics so that the diarrhea stops (trying to prevent further dehydration, of course), (iii) that he doesn't lose too much weight from not eating much for a week or so, (iv) that the poor kid would get some sleep so that his body can start healing and (v) that no one else in the house gets it.
(This is what Bodie thinks about Hand, Foot and Mouth Disease)




  1. Oh my word.. We had an outbreak here in November, our neighbor's kids had it, my nephew had it, several friend's kids had it, all who had contact with ours kids. I have no idea how we avoided it! My nephew was only 8 months at the time and was completely miserable for days. The sores on his feet ended up peeling tons of skin off and his poor feet were pink and raw :( Poor Bodie! I have heard lots of great things about gentian violet helping to soothe mouth sores. You can sometimes find it at CVS but usually have better luck at a natural foods store or vitamin shoppe. Hope you guys make it thru these next few days with your sanity! <3 hugs!

  2. Poor Bodie and Poor Mama! Amy after all this passes I think a spa day's in order for you, plus a completely uninterrupted night of sleep. I know, I know - easier said than done :). But don't forget to take care of yourself too!

  3. sweet sister, beloved friend. i don't even know what to say except i'm praying for you, without ceasing. and if the winds could carry my love for ya'll there'd be a tornado on its way to Los Angeles.

  4. I had no idea HFM could do that...Praying for your guys - Hope he feel better VERY soon!