I think I’ve had enough of this week. Can it be over now? Please??
Daniel and I met with the audiologist on Monday to follow up on the ABR from last month. (The ABR showed some hearing loss in both ears.) Daniel was an angel and slept through the entire appointment, even while having probes stuck in his ears and manipulated around. And that was after he’d already had at least two (but maybe three) naps!
What I heard was NOT what I was hoping for. Daniel has mild hearing loss in both ears. It’s permanent – not related at all to gunk in his middle ear. His tubes are not working properly, as in…there’s fluid behind his eardrums. Again. So instead of a mild hearing loss, he has more like a moderate-severe loss in both ears. Ugh. (Let me just insert my petty and irrelevant complaint about all the money we spent to have those suckers put in his ears!!!) And, the big kicker: he needs hearing aids, but his ear canals are too small for them. Really.
I left the appointment practically in tears (which came when I started relaying all the information to Jared). Daniel continued on with his nap, blissfully unaware of the sadness his mother was feeling about how much he is missing out on. We have to start ear drops again, and go see the ENT again (shall we arrange for a standing appointment?), and some other stuff.
Speaking of drops…Daniel’s eyes have been gunky again. Again?!? They were good for about two weeks, and have now been gunky (though not as bad as before) for about 10 days. Groan, moan, complain some more. (Here’s another petty and irrelevant complaint about all the money we spent to get those suckers open!) When I talked to the doctor (not a nurse or a tech…the doctor!), I heard what I never thought I’d hear (or ever wanted to hear) out of a doctor’s mouth: “Oh No!” No, it’s not life-threatening, nor is it even eye-threatening. But, in the words of the doctor, “Well, we may just have to go BACK in and put in stents.” For now, we have to start eye drops again, and go see the ophthalmologist…again.
(Wash, rinse, repeat…right?)
And now for the new chapter in the saga that is this week. I have had some concerns that Daniel may be having sleep apnea. He is often a very restless sleeper, his breathing (especially at night) is noisy, I hear gasps and pauses, and he sleeps A LOT. Remember the naps from up above? Three or four (or more) naps is his status quo for daytime, along with 10-12 hours of sleep at night. So yesterday Mama called the doctor and the doctor said…let’s check his oxygen saturation overnight for a week. But after seeing his sats drop to 86 in the first 10 minutes of sleep, I thought I should call the doctor this morning, just to let him know. Well, that put an end to the pulse-ox monitor and now Daniel is on oxygen at night. What is our diagnosis? Your guess is as good as mine! I thought he’d want to get a sleep study scheduled, or have us come in to rule out anything heart-lung related. I shall be calling in the morning. I hate being THAT mom.
That’s it folks. The week that I would like to end.
The joys that come with our kiddos' small ear canals, crappy lungs, floppy airways ;) Hang in there. I'm no doctor, but yeah - your kiddo has sleep apnea!!! When he's a bit older, you can look forward to having tonsils and adenoids out which should help with keeping his airway open. Oxygen at night til then. BUT, on a brighter note... if your doc ok's it, do oxygen by tent. Have I already suggested it? Can't remember. Just put a sheet over the crib and crank up the o2 (with the oximeter on) so that his levels stay above 90. We are at 2 liters (and Max only needs 1/4 ltr by cannula - so just test how high you need). We actually have our appt tomorrow to see if Max still needs the O2 at night. Crossing my fingers! Your pedi or ENT can order a sleep study. I had to request our first one. Some docs just brush off the restless sleep - ugh.
ReplyDeleteif your doc isn't sold on a sleep study, take this article with you to your next appt - http://www.ds-health.com/apnea.htm
ReplyDeleteOur pulmo advises EVERY kiddo with Ds have a sleep study :)
As I re-read my tent instructions, I don't think I was clear (in case anyone else reads it and is confused)... just put the end of the oxygen tube in the crib - I drape mine over the rail. I also tape a funnel to the end, just so it doesn't get buried in a blanket or something. I also leave a corner of the crib uncovered, just for circulation and cause it freaked me out at first to have it totally covered! This is how our pulmo doc recommended we do it.
ReplyDelete