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December 21, 2005
Doctors: Round Two
This week marked the next round of doctor's visits for this month. Monday we had a pediatric cardiologist visit at noon and another appointment with an Otolaryngologist at 3pm. Otolaryngologist is the fancy name for an ENT doctor (Ears Nose Throat). Try saying it fast more than once. Hell, try saying it the first time, it's one of those tonguefumblers.
We had to be at the hospital half an hour early so that one of the staff could do an EKG on Dashiell first before we went in to see Dr. Crowe. EKG's involve having lots of little 3M metallic looking stickers stuck all over Dash's chest, and one each on his arms and legs. He stayed surprisingly still while they got the reading which was good, because squirming makes his heartrate erratic and more frequent.
Then on to the doctor, where we had Dash weighed and measured (12lb2oz, 25.5 in.). While he was naked on the table before getting measured he let rip with a huge pee. What I want to know is where a body that small stores a volume of pee that big? It was an obscene amount for a little critter like him. Heavy wetter for sure. Using quick moves Dr. Crowe quickly saved Dash's outfit from the encroaching pee puddle (I was on the other side of the room grabbing something). Dr. Crowe has a 3 year old, so he's got the fast parent moves down pat by now. He also took the peeing in stride, and regaled me with some stories about how he once had a little patient pee into his coat pocket when he still wore white doctor's coats (he was mostly impressed by the great aim). He no longer wears white doctor's coats. And he also mentioned how recently his son had felt ill while they were visiting his wife's office and decided that daddy's hand was a perfect barf bag. You get used to all the various and sundry bodily fluids from kids if you work with them or parent them, and the fact that they generally wash off easily.
After the naked time we got Dashiell back into a diaper, and he had an echocardiogram (basically chest ultrasound) to see how his heart is doing. He fell asleep during the echo about halfway through which was good, especially seeing as it took over half an hour I think.
The results are basically a mixed bag, and kind of contradictory. Clinically Dash is doing really well. He's feeding well, still gaining weight (albeit slowly), his liver is fine as are his lungs, and it doesn't look like the left side of his heart is getting larger to compensate for the little open valve/tube. If his body wasn't coping well his liver would enlarge and he'd be breathing more rapidly/heavily, as though having exerted himself, and the left side of his heart would enlarge to cope with the increased volume. On the echo though it's obvious that there isn't any change in the size of the open tube, and the valve is also still open. Dr. Crowe feels that seeing as he's 5 months old and there's been no real change at all since he was first monitored (which I think was at 4 or 6 weeks) that it's not likely that it's going to close by itself at this point. He's going to compare the results from this echo with the one that was done when we first took Dash there to make sure that there isn't any negative changes (bigger left-side heart etc.) and after that I think we're going to decide what happens next. It's possible that he'll go on medication first, which might help him gain some more weight. The weightgain is important because I believe there are weight requirements to be met if they want to do a procedure to close the valve and tube via a catheter inserted into a vessel in his groin. If that's not an option, he'd need more invasive surgery, where they'd have to make an incision in his side and go in from there. Obviously I'd like that to be the last option. But we'll have to see if the others are workable. Dr. Crowe doesn't want to needlessly put him on medication either, so it needs to be established that the medication will actually help him too, or if we need to skip that step entirely.
I'm glad that Dr. Crowe likes to explore alternatives from the least invasive first, because sure, surgery would work, but you don't really want to start with that particular avenue. Anyway, Dash has a follow-up in 4 weeks at which point both Echos will have been compared and then I'll hear what's next.
So I finally got home from that appointment around 1.30 or so with some lunch in hand. An hour at home to feed myself and Dash, and then around 2.30 I left for the 3pm appointment. Now, this doctor's office is only 7 miles away, a 12 minute drive according to Google Maps, because a chunk of it goes down one of the parkways. I just left early because I'd never been there before and I knew there would be some wad of paperwork to fill in as a new patient once I got there. I get on the Sprain Brook Pkwy, and of course just after I round a curve in the road (and the exit that's right after the entrance I use) traffic grinds to a halt. They closed off 2 lanes on a 3 lane highway. Aargh! It took forever just to get to the next exit, which was a mere 1/2 or 1/4 mile away. I'd called PreZ on the phone to plot directions for me from that particular exit to where I needed to go. Of course the roads off the parkway were busy too as lots of people had also decided to get off to find another route. Then onto a local road we use a lot, which is always very busy too, and of course that was crawling along all the way through town.
I finally got to the doctor's office at 3.30pm. One whole hour to go 7 miles! I was glad Dash had actually slept through the whole trip, because you really don't need a screaming child on top of the aggravation that is sitting in stationary or crawling traffic. PreZ, thankfully, had called ahead to let them know what was going on and that I was going to be late, but still, I felt terrible.
The visit with the ENT was more precautionary than anything else. Kids with Cri du Chat syndrome often have small/narrow larynxes (which is one of the reasons many have that cat's cry), and with the cold and flu season setting in, it's nice to know whether or not Dash has a narrow larynx that might cause more serious problems were he to catch a cold.
I filled out the paperwork stuff and was subsequently ushered into a room. So the usual looking up noses, into ears and checking of the throat with one of those ice-cream sticks (they make them flavoured nowadays for kids... sheesh), and onto the part that Dashiell really didn't like. He got a little camera tube shoved up his nose and down his throat so that the doctor could check out his voicebox. Apparantly there was some numbing gel that they rubbed on it, but it certainly didn't seem like it worked. Now either the doctor accidentally knocked him in the mouth, or Dash scratched himself or something while squirming frantically, but when that was done he was bleeding. The frenulum of his upper lip attaches to the bottom part of the gum, so anything that would push his upper lip up too far would tear it, which is what looks like happened. It was only a tiny little tear from the looks of it. The doctor rubbed some ointment on it which stemmed the bleeding.
Poor little Dash.
However, pretty good news on the larynx front. His larynx seems normal, if maybe a tad on the smaller side. But I'm guessing it still fell well within normal range. He has a follow-up in 2 weeks with another doctor in the practise, a new acquisition, who specialises in pediatric stuff, and more specifically throats/voiceboxes. The doctor he saw just wants to have him checked out periodically (obviously not every 2 weeks though).
So a busy day for the both of us. I finally got home close to 5.30pm I believe after a little stop-off to fetch a latte at Dunkin Donuts.
When I arrived home the results from his evaluation for Early Intervention were in the mailbox.
The short of it is that they recommend him for EI, due to delays in oromotor development, adaptive development and gross and fine motor skills. While I realise they exaggerate things in the report (which they already told us), I have to wonder about (part of) the oromotor development stuff... in the various reports I keep reading that I/we apparantly said Dash has trouble feeding, which I know I never said, and which he doesn't have. Ah well. He's "appropriate for age" with his social-emotional, communication and cognitive development, which is good.
They're recommending low frequency physical therapy and moderate frequency occupational therapy.
I wish people could read though... I do not have a C in my first name (supposed to be an E), nor an A in my last name (supposed to be an O). But I guess if you're the person stuck transcribing doctor's scrawl, you'd get some stuff wrong too...
Next up there will be a meeting about the Early Intervention stuff where I guess we discuss the results and the next steps to take. So between that meeting and the follow-up ENT meeting, there will be only two more appointments for the rest of this month.
Posted on 01:13 PM to: Cri du Chat , Dashiell