Gotta do the laundry.Posted: March 10, 2013 Filed under: Down syndrome, medical stuff | Tags: Down syndrome, medical intervention, Sleep apnea 4 Comments
Sometimes it is more fun for me to pontificate on the nature of life and fate, but other times I realize that a lot of people who read this blog are wanting to know what is going on medically for us. Like doing the laundry. Maybe not the most glorious post, but important. Truth be told, the ENT appointment was not as apocalyptic as I had foreseen in my imagination, and the relief of that coupled with the end of the week just made me not want to do much of anything. We had a lot of medical appointments this week. Enough that I really regretted scheduling them all, but of course felt like I had no choice because these specialist doctors run around like demigods and their calendars flex for no one. So you take what you can get.
First, the sleep study…
Basically, LP did relatively well, but hated the cannula (little plastic tubing they stick in your nose to measure his carbon dioxide output while he sleeps). So he’d rub his head back and forth to get the thing out, then the sleep tech would come in, shine a flashlight in his face to get it back in, wake him up, then I’d have to nurse him back down again while he tried to rub his head back and forth to get the cannula out, again. Rinse, repeat. Usually LP sleeps from when we put him down (around 7:30 or 8pm) to 4:00 or 5:00 in the morning. At the sleep study, he woke up three times between 10pm and 5:30am.
This is all to say, he did not sleep as he normally does at home.
So then I drag us back to Los Gatos the next morning to get the preliminary results of the sleep study. The doctor was very nice, clearly very intelligent. He informed me that LP does, in fact have obstructive sleep apnea (OSA), and he thinks it is moderate to severe and caused by the laryngomalacia. Apparently LP’s oxygen levels are just fine, which is the greatest concern with OSA. LP wakes himself up every time his breathing is obstructed, but waking up so often results in poor quality sleep. According to the doctor, an average baby his age spends about 50% of his time in deep sleep. LP was somewhere in the mid 20s. He told me that wearing a Continuous Positive Airway Pressure (CPAP) mask may be a good option, as well as looking into surgically widening LP’s airways (laser surgery) to help the obstruction. Was very adamant that something had to happen about the OSA. (As an aside, you’re probably wondering what a CPAP mask even is. It is basically a full face mask that continually blows air into your airways to prevent any collapse. Kids @#%ing hate it. I mean, I’ve read stories of moms trying to get their kids to wear them and giving up after nights of tears, tantrums, vomiting, the works. Adults liken the feeling to being drowned by air.) Left that appointment feeling really deflated, and had a good cry in the car before driving back. Decided the solution was to eat a ham and cheese croissant.
I think this week was the first time I really started thinking that LP may have some serious stuff going on, and that was a rude awakening. I don’t mean to be ungrateful. I just hate the idea that my baby’s body is struggling. And the idea of trying to get LP to sleep with that mask on every night just sounds torturous.
So, then the eye check…
I swear that I called pediatric eye clinic and they told me to go to the main building of the hospital. As you’re guessing, the office was not in that main building. So after getting in the car and driving to the correct building, then they bumped me into the next slot, I finally got into the waiting room, and, well… I waited. Then waited. Finally just decided to nurse LP because he was getting fussy and tired. Five minutes into that nursing, the doctor finally came in, took one look at me nursing LP and exclaimed, “Oh, I can come back, nobody told me you were doing that.”
I just kept feeding LP and waited for the doctor to come back. He did, and was about to leave again, when I just called out that he should stay and get on with the appointment. The guy comes in reluctantly, looks through LP’s chart, points to him, and asks, “Down Syndrome?” No hello. No how are you doing today.
The guy was a total herb. He basically spent the entire appointment telling me about “those Down Syndrome kids”, and all sorts of stuff about “them” without ever so much as looking at LP while he spoke. I felt like it was just a big session for him to flex his knowledge of factoids and statistics he knew. Whatever. He checked his eyes out (much to LP’s distaste, as I’m pretty sure LP knew this guy was a total waste of space), and everything looks fine. Had I been worried about his sight, I think we’d take LP to another doctor just in case, but we are pretty confident that his sight is fine, so we’re just going to leave it at that.
And finally, the ENT…
After that, I was emotionally ready to have another awful interaction with a doctor, so I was pleasantly surprised at our appointment with an ENT to talk about LP’s sleep apnea, aspiration, and laryngomalacia. The doctor was a cross between Eugene Levy and Woody Allen, and despite his terrible awkward manner, was endearing in a strange way.
He took one look at LP, and asked 1) has he ever been hospitalized, does he seem healthy, and 2) is he gaining weight. I answered yes to those two things. He told me that he thinks that kids with DS are over treated sometimes in an overzealous attempt to “fix” them, when in fact, those medical interventions end up hurting more than helping. His response to my main concern, aspiration, was that every person aspirates small amounts. When a person’s health is compromised or the aspiration becomes too much to clear out of the lungs, then pneumonia is feared. Given that LP is healthy and gaining, however, the doc thought doing a swallow study would be more harmful than good. He was a big, big proponent of me nursing, for the very reasons that I had talked about earlier. He also didn’t think I was crazy for not wanting to put barium as the first non-breastmilk substance into LP’s body, and that was refreshing. So he gave me some pointers to help minimize the chance of aspiration while I nurse, and we left it at that. No swallow study unless something changes.
The other thing we discussed is LP’s laryngomalacia. He took a look with a mirror, and confirmed that it is very likely. Apparently some treat the condition with laser surgery, during which a doctor will basically shave some of the cartilage away with a laser, widening the airway and making it less “floppy”. Less floppy = less obstruction. His partner in the practice is (according to him) an expert on this particular procedure, so we are going back in two weeks to see her.
In the meantime…
I am really feeling conflicted about the sleep study. I’m not able to find any evidence that this 50% deep sleep figure I’m quoted is truly some “ideal” amount of deep sleep a baby needs. The ENT also told me that a percentage in the mid 20s was not as big of a concern as something under 15%. I’m just skeptical. I’ve also learned that one issue with the CPAP mask is that, over time, it can affect the growth of the midface region. Because he has DS and already has some space issues with his facial structures, I really do not want to be messing with that.
For me, I think it boils down to this… LP is growing and seems otherwise healthy. Is it truly necessary to perform all these medical interventions in order to get his deep sleep percentage into some kind of ideal range? Is it just what happens to look average, or is there real evidence that the lower that number goes, the poorer the outcomes? I’ve read that cosleeping actually results in less deep sleep, but in those studies that is lauded as positive because the baby’s frequent wakings serve as a protective device against sleeping so deeply that a baby would experience oxygenation difficulties. So why now is it so bad to have a lower amount of deep sleep when LP is known to have DS? I’m sure that not enough deep sleep is probably bad. Call me crazy, but maybe he just didn’t sleep deeply because he had some plastic tubing shoved up his nose and a bunch of wires all over his body. And are we going to make him wear a windy space mask every night and laser the cartilage in his throat? I’m much less sure of that.
Wow. Explaining this medical stuff takes forever.
This week we are having a physical therapist come to our house for LP’s Early Intervention (EI) service assessment. I’m so excited. Uh huh. Yep.
I’m sure having a lady come into my house, watch LP for an hour, then reduce all of his delays onto a piece of paper is going to be an awesome experience. Jisun, why are you such a wet rag about this, you ask? I’m not sure. I think I’m burnt out on professional assistance maybe. I’m also really conflicted about entering LP into the disability “system” at all. It isn’t that I’m trying to deny he has Down Syndrome. Clearly he does, and he is going to need some help because of it. But I have deep reservations about our society’s way of treating those with disabilities. Entering my son into EI will be his first step into a system that “treats” disabilities and has been created by that very same flawed society. We are still doing it, but I’m just saying, that is why I’m such a wet rag about it. It is a big topic. I’ll write more about it sometime in the near future.
In the meantime, here is a picture of LP I took this afternoon. My friend Toby pointed out that he is missing a hand. I think that has come to be my favorite little detail of this picture. That, and he beaver poking his eyes out over the edge of the picture.
p.s. I’m fully aware that I could have probably told you this information in half the space. I’m currently a little too tired for succinct writing, however, so this is what you get. Love to you all.
Oh man…I’m with you. If we would have taken out typical children to all of these specialists I guarantee something could be found wrong with them as well. A part of me wishes I could have just waited to mess with all the appts…but what’s done is done. Cpap? Ugh…Camden would not like that on his face either.
I know! I’m pretty sure if we had done this with my older two, they would have been diagnosed with a whole mess of “disorders”. Well, we opened the Pandora’s box. At least we have each other to figure it out together. :)
Sigh. You bring back so many memories for me. All those specialists when Finn was a babe – ack. And you know how I feel about EI. And yet, when you find yourself dropped onto this path of parenting a child with special needs, you feel like a fish out of water, right? It takes a while to get your bearings and figure out what parts of “conventional wisdom” feel right to you, and which don’t.
I think you did an excellent job of explaining the medical stuff, by the way. And I’m glad you had at least one doctor who was human.
I wonder if I give you mamas of older kids PTSD sometimes. Meriah said something similar when I first ran into her online. I’m so consumed with what is happening for us now, it is easy to forget that it won’t always be like this. But that is why I became a DS ninja. ;)