So if you're paying attention you might have noticed that Monday was Maisie's SECOND DAY OF SCHOOOOOOOOL!!!!
She still loves it, she still came home and conked out for like three hours before dinner, she was still exhilarated and exhausted.
Nothing much to talk about there.
What I really need to talk about is lungs!
I realized when writing my post last week, I realized that I have completely stopped telling y'all about lungs!
Her breathing maintenance has been part of our lives since day one. I have become so used to nebulizers and CPAP machines and inhalers that I literally forgot that most people don't deal with that. I did a "Day in the Life" post a while back in which I failed to mention any breathing equipment. Because I guess I thought talking about that was like talking about brushing her teeth. Or my teeth. Boring. Whoops.
So today I'm going to a Day in the Life of a Breathing Episode.
That's literally what we call them. Maisie has no technical diagnosis except that the bottom half of her left lung does not communicate with her brain. So it doesn't do anything. There are no capillaries to that part of her lung, no air enters the alveoli, nothing happens. Normally, it's not a problem. When she was more active she would get out of breath or dizzy faster than her playmates, but the bigger problem right now (since she's not running and jumping) is that whenever she gets the slightest little cough or chest cold, we have to spring into action right away so that she can get enough oxygen.
Here's what happens when Maisie is experiencing any kind of cough, chest cold, wheezing, whatever. We call it a breathing episode and this is how we deal:
7:00
As soon as I'm downstairs I check the CPAP machine. I usually wake up three or four times during the night and check on her when she's on the CPAP machine. I don't really have a rational explanation, because usually her life is not relying on CPAP, but I feel like I have to make sure she's still hooked up (this is what a CPAP looks like. The tube is connected to just a regular pump kind of a thing. Nothing exciting. Looks a bit like a nebulizer or a feeding pump.)8:00
Jeff wakes up and usually he checks on Maisie too :)
9:00
10:00
Feeding is probably done, maybe not. I check her oxygen levels again and hopefully they're fine now. By the way, "fine" for Maisie means anywhere above 80-85. For most people, anywhere above 90 is fine, but Maisie has a little bit of allowance there. She doesn't get fed again until 1:00 so until then we often go out and do something fun. Museums, beach, park, something like that. When she's in the middle of an episode, though, this means taking with us her inhaler, nebulizer, pulse oximeter, and mini oxygen tank.
1:00
Feeding time! I've been checking her oxygen levels on the hour and if they dipped below 85 (or 80 but she wasn't experiencing symptoms), I listened to her breathing with my trusty stethoscope. If she's wheezing she takes the nebulizer (assuming it's been at least four hours since her first nebulization of the day) but if not I hook her up to the oxygen tank and go on our merry way.
We almost always come home for feeds just because it's such a hassle to bring her feeding supplies with us. So, home for lunch and basically the day continues in the same way until bedtime.
9:00
Maisie always sleeps with a CPAP machine when she's having an episode. It gives her overworked lungs a much-needed break and usually means she gets over whatever her cold or cough or infection or whatever much faster. So brush her teeth, bath time if necessary, and strap on her CPAP mask. For the next few hours we check on her every hour or so until we fall asleep, and like I said before we get up a lot in the night to check on her and take her blood oxygen level.
It might seem like a lot of work for a minor problem, but all these precautions are just that, precautions. If we don't take them and aren't super careful, a minor cough could turn into a hospital stay. She has 75% lung function as it is, and she cannot afford to lose any more. So when she has any kind of respiratory distress, we give it our all to make sure a little bit doesn't go a long way.
One last thing: we have a lot of equipment, and a lot of it isn't completely necessary 100% of the time. Don't get me wrong: we use every piece of equipment we have. But not always, not all the time. And this stuff is very expensive. I frequently get angry Facebook messages and comments with the same theme: aren't you afraid you're taking away equipment from other kids for your own convenience? Yes. We are. We are very very lucky to have been given many things -- from standers to oxygen tanks -- and to be in a place financially where we can purchase equipment for our convenience. But when Maisie doesn't need her CPAP machine or her nebulizer, I often loan them out to friends who do need them and can't afford them. Right now, a boy we met through the mito circle is using Maisie's nebulizer until his parents can purchase or rent one of their own. If Maisie goes into respiratory distress and needs to have a nebulizer, we might rush her to the hospital, rent one, or find another way so Joshua can have what he needs. We are lucky, and we are so happy to pay it forward. Rest assured that no one is suffering for our convenience.
That's all for now, I think I still have to update about neurology so I'll do that later, but the muffins are ready!
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