beep beep, beep beep

This is the sound of the monitor when Aaron's respiration drops. beep-beep, beep-beep. In my previous post I discussed Aaron's lackluster physicalness. As the week progressed, I noticed a tiny improvement in his latch and was hopeful that whatever was bothering him was on it's way out.

But I was wrong.

Saturday we spent the day hanging around the house and getting chores done. Not a lot to do since the morning was very rainy. I baked some blueberry muffins and delivered some to church since I couldn't stay to help out with spring cleaning or Easter egg stuffing/hiding. During one of Aaron's last feedings of the day, I noticed something strange with his mouth. It was hanging open and the tip of his tongue was sticking out. beep-beep, beep-beep. Odd. So with the list of physical symptoms as they were and not improving (listlessness, weak, no muscle tone, pretty much a floppy baby) and now this new thing, I hit the web.

What could it be? MS? CP? Downs? What else looks like this? Then a hit.
Constipation? check - he hasn't pooped in 8 days
Flat facial expression? check - hardly smiling and droopy lids
Poor feeding (weak sucking)? check - this is one of the reasons we went to the doctor earlier in the week
Weak cry? check - is this what was bothering him?
Decreased movement? check check check
Trouble swallowing with excessive drooling? not so much
Muscle weakness? triple check again!
Breathing problems? hard to say

Infant Botulism

Eureka! Dammit! I consulted with Steven and we both decided it was best to call the on-call pediatrician. After 40 mins or so he called back and I explained what was going on and what my research had brought to light. beep-beep, beep-beep. He told us to go to the Fairfax Emergency room and get it checked out. Quick call to Frank, gobble dinner at 9:30pm, and off we go.

hmm. hmm. Apparently we've puzzled the ER Pediatric doctor. I again explained my assumption and he said it's rare and he's seen it once in the last year. We don't get to go home, we have to admit, get tests (poor guy), and consult with a neurologist in the morning. Hang out until we get a bed assignment beep-beep.

Sunday. Dr Atiyeh, the on-call pediatrician stops by. I again review the symptoms and he says it sounds like infant botulism but we'll do more tests and see the neurologist. beep-beep. Dr McClintock comes in later in the morning. I review the symptoms and he listens. He evaluates Aaron and is pretty certain it's infant botulism - as rare as it is, in his 20 year experience I can only have faith that everyone (including my initial assumption is correct - damn the internet). I want them to rule out everything on the planet before we commit to an initial diagnosis. He reassures me and says we'll do a nerve conduction test tomorrow, run some more blood tests to rule out other neuro-muscular problems, and we'll need to get a stool in order to get it tested for botulism. beep-beep.

What is it about baby poop anyway? Mothers and doctors obsess over baby poop. How often, what color, what consistency, good grief. Aaron got an abdominal x-ray to be sure there was no intestinal blockage causing his constipation. Later that morning the nurse gives him a suppository, obviously no blockage. beep-beep. 2 hours later, nothing. Another suppository. 1 hour later nothing. OK, are you going to just keep giving him suppositories? Steven, Frank and Susan and Kyrksen took Zofia to church and the Easter Egg Hunt in the morning. He really needed to do that with her and she had a blast (she's such a trooper). Pastor Kim stops by to see how we are doing. We talk about what's been going on. beep-beep. OH! YAHOO! POOP! The nurse collects it and it's not enough - you're kidding, right? I doubt the lab actually NEEDS that much. beep-beep.

Time is a blur. What day is it? When did we check-in? What day is it? Steven and I coordinate and he comes over at dinner-time. I give him a quick update and head home to see Zofia, feed her dinner and do the bedtime routine. I'm fried. My eyeballs hurt. I call my mom and get some bad news about Bill (more on that later). I get home and am glad to see Z and it's mutual. She "tells" me about her day. I fix dinner for her and Frank and then go take a shower. I want to stay in the water forever. It's always amazing the power of water. I feel refreshed and catch up on emails, coordinate childcare for the morning because Steven has to go to work, and pack up to go back to the hospital. I call Kathy from church and ask her to hang out so Frank can go home and get some sleep.

Back at the hospital, Steven and I catch up and I send him home. beep-beep. I start writing this post and can't stay awake to finish.... good night. beep-beep