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January 11, 2006
Doctor Updates
I realise I completely forgot to mention what happened with the ENT follow-up on the 30th.
We went back for a follow-up visit with a different doctor in the practise, who specialises in children and throats. This doctor was a lot better at numbing up Dashiell's nostril, as rather than just coat the tube with some numbing gel and sticking it in about 3 seconds later, she syringed some numbing gel into his nostril got me to hold him so that he was leaning back and it would numb the entire passage to his voicebox, and waited at least 5-10 minutes (i.e. something came up that she was also doing/finishing). Nevertheless, Dash wasn't amused by having a scope shoved up his nose again, and I can't say I blame him.
The good news is that his larynx looks normal. Score another one for the team.
As opposed to the other ENT who was all "well, we'll have to monitor him regularly" this one basically told us to come back if he has any serious issues, but other than that we're fine. Nice to know someone isn't trying to gouge you for frequent co-pays and fees billed to the insurance company.
Then Tuesday PreZ managed to get a hold of Dr. Crowe, who called with an update regarding Dashiell's heart condition. It looks like minor surgery is the ticket, though thankfully he weighs enough for the much less invasive catheter procedure, rather than actually having to have an incision in his chest.
I believe we'll be able to do this procedure in about 10 days, and then the follow-up just before the end of the month... before our insurance ends and before we leave the country on vacation. PreZ mentioned something about Dash needing to stay in the hospital overnight. So, I'll probably be there overnight too (there's no way I'm leaving him there by himself, plus he's breastfed too...). I got a follow-up call from Dr. Crowe yesterday evening who mentioned that right now they have a slot for the 25th, but that he's going to call the group of doctors he's recommending for the surgery to see if he can get Dash in earlier so we can still do a check-up a week later before we leave. He also confirmed that they keep them overnight for observation, and that I/we'll be able to spend the night there too. I'll probably have to pump milk though, because I doubt they'd want me picking him up to nurse him, but we'll see. The breast pump comes with a carry case, and I can already bring some with me so I have a head start (seeing as pumping never really gets you the same amount as having him suckle himself).
Dr. Crowe also faxed us a Cri du Chat growth chart which he'd come across, which we hadn't been able to find so far. So that's good as it gives us a more accurate representation of how he's doing weight-wise within normal parameters for his condition, rather than based on a chart of "normal" kids (who are often primarily formula fed too, which also gives a discrepency between "normal" breastfed and formula fed kids).
And in other news, after playing phone tag for about a week and a half, the OT finally got a hold of me this morning and we have 2 times scheduled which is good, so that's all the therapies and stuff sorted.
Posted on 10:28 AM to: Cri du Chat , Dashiell , Therapy