Fortunately, our expansive team of experts was able to figure things out. Where it looked like Lizard Loaf wasn't fully expanding his lungs to most of the doctors, the lung doctors could tell that he had fluid in his lungs. The cardiologist also said, separately, that it didn't look like the artery was causing a problem. The ENT gang backed off on the bronchial scope. At this point, Lizard Loaf had been cleared of all infections and was just in the hospital because he needed to be on oxygen. The big question became: How did the fluid get there?
Our amazing pediatrician recommended a swallow test. This means enriching Lizard Loaf's bottle with barium and taking a video x-ray. As it turns out, he has been breathing in some milk when he eats. He has a delayed swallow, which means he sucks in the milk, but doesn't start to swallow at the same time. So, some of the milk falls down his open airway. The answer is relatively simple. We need to thicken his milk with some rice cereal. This will give him better control of the fluid when he's swallowing, and also, as I understand it, make the particles to big to get all the way down to his lungs. Meanwhile, he's on oxygen, which is not as much of a hassle as I thought it would be, and we are treating him with chest claps to help the fluid get out of his lungs. We hope it all works. It's a low-tech operation. We're trying to find a good nipple for his bottles that let the thicker liquid through easily without gushing out so much that he can't control it. Turtar and I received different training on how to do the chest claps, and that concerns me. Besides, it seems a little funny that clapping a cupped hand on your baby's chest in certain ways for 12 minutes in the morning and at night will get fluid out of his lungs. Here's where I defer to the experts again. We see the lung doctors in two weeks, and we hope we can get rid of the oxygen tube. We hope that this aspiration problem is the only cause of the fluid in his lungs and that we have the final solution already.
We are enjoying a quiet weekend at home right now, just enjoying the size and rhythm of our newly expanded family. A few days ago I had what might be a generic epiphany. Down syndrome is LL's burden, not mine. I think that before I may actually have been crying for myself, thinking about my own hardships. (How selfish am I?!) At the hospital while I held him, I just cried and mourned all the extra burdens he already has in this life, all the stumbling blocks he's faced and will face. I know that his soul is eternal, and Down syndrome is not. I know that in this life, we will cherish and love him, but I'm anxious to meet him in the next life when he has been freed of these burdens.
Turtar and I have also chosen his theme song: "Workin' Them Angels" from the Snakes & Arrows album by Rush. Here's the chorus:
All my life
I've been workin' them angels overtime
Riding and driving and living
So close to the edge
Workin' them angels - Overtime
2 comments:
Wow. So much to go through in such a short time. I know how it feels because I have so been there. Connor and Christian had so many apnea and brady's while they were tiny (only 4 pounds). We ended up dealing in 5 weeks of NICU time for both babies (in two different hospitals). I know how it feels to finally be home again! I hope your little guy gets better soon. He sounds like a trooper. We would love more pics. Love ya! Lisa
Glad to know the fix is relatively simple. And that you're home. Funny how that changes so much.
love the theme song. And it's not selfish to cry for yourself -- I'm sure you've heard it, but you have things to grieve for, too. It's good that you're moving beyond that, but I'm sure it'll be revisited throughout his lifetime. But he'll be able to lean on your strength.
I read a book the other day and thought of you. "The Memory Keeper's Daughter." I don't know that it's a book you should read now, it may be better years down the road. Or it may be better now. It's heartwrenching.
Anyway.....I thought of you.
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