I didn’t want to title this much more than that because when I hear the word-I know what I am thinking of but because of all the negativity, I didn’t want to give it a full title. Basically, while what I want to do as a blogger is educate and share and just journal aloud because I found that therapeutic to hear my thoughts and feelings echoed in other parents..I just don’t want someone to take that as me being unhappy with my son or my life. nothing could be further from the truth. The negativity I speak of is how CBS (echoing what many think and maybe do not say aloud) praised Iceland for “eradicating” Down syndrome. When they say eradicate of course they mean finding out which babies tested positive in an early prenatal test (which isn’t even always accurate, by the way) then aborted them.
So you see, I don’t want someone to search the internet and find things in my blog to make them feel overwhelmed and think okay, that’s confirmation I don’t want to go that route. Really though, people can find something negative about Down Syndrome and more bleak ways that mention all the limitations and none of the blessings and discussions of how they ARE people (what a concept) in cold medical facts or other unbalanced information out there. So I will continue to write about my reality, even if it sounds daunting with Ethan’s medical issues especially. Here is the thing, though” ANY kid can turn up having one or many issues that rock your life. You signed up to be a parent (or you didn’t but you didn’t prevent it so you might decide to keep the kid and here we are. You sometimes will get a kid who is either born medically fragile somewhat or can get that way at any instant, to be honest (accidents, later onset issues, etc.)
So back to pincushion. I labeled it that because I am going to be real that the word ‘pincushion” is what I think of when I think of Ethan (now 5) has to go through on a regular basis. He knows nothing else and has a fantastic attitude, but this is his reality just in a few months:
IN A FEW MONTHS, HERE IS THE POKING AND PRODDING GOING ON
Ethan is now spending at least an hour in an airway clearance system vest for his chronic lung disease in hopes that anything he might be aspiration or illnesses creating mucous would get shaken up and prevent pneumonia (because that last one in May which was coming on when I wrote the last post on ADHD, actually was BAD. Like we didn’t know how bad until the follow-up visit and the doctors were all wide-eyed and serious and talking to us like they really haven’t since he was a baby and on the vent for flu and pneumonia. He hasn’t actually gotten sick since he’s received the vest but I feel like it may have been put to the test (and passed-yay!) when he had low oxygenation when I spot checked the other night (and also rechecked and did continuous) and we bumped it to 4xs daily for the vest treatment. Two nights later, his oxygen was MUCH better. So that is positive. But still, 1-2 hours in a vest?
He also has had his blood drawn SO much, bless him. Just not the everyday kid stuff you know? Also we were told endocrine will probably want to do this long blood test on him while he’s fasting because it appears he has not grown at ALL in quite awhile, so he may have a growth hormone deficiency. Now to be clear, these things are not all that common in Down Syndrome. Down Syndrome and the likelihood of different “floppy” airways or low muscle tone can factor into the chronic lung disease being worsened, but the CLD is most likely from getting sick as a baby. So again, can’t say its only kids with DS who struggle. They do have higher chances for this or that but it doesn’t mean they will get it OR that your typical kids won’t.
In a little over a month he is scheduled to have his airways looked at while he is asleep. He had this done 3 years ago when he got his tonsils out but its being repeated to be sure there isn’t a laryngeal cleft or something. So blood draws, potentially MORE blood draws (while fasting), and a bronchoscopy all in a few months, likely. And that is when he is well. His patience and strength amaze me. We want him to have the most normal childhood as possible and he really does get to do most of that “kid stuff” with us following him around with medicine and extra caution, of course. Extra caution and extra prayer. That needs to happen more than I have admittedly, but I just enjoy each day and try to not think about all the what ifs. Today he cried when I took his oxygen dots off from the other day and handed them to me like “okay throw those away and lets not use those anymore, mmk?’ Oh and he is doing awesome at preschool. It is so freeing to let him do that again and know that while he might struggle with chronic lung disease for a few more years or maybe always, keeping him out at the age he is now is just not helping anymore so we will take on whatever struggles come from illness but we will know he gets to be a kid. Making a new little friend and making cars go down a ramp at the end of the school day.