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Saturday, March 27, 2010

What's happening with Mikey 3/27/10

Here's the story that brings us to today. I've omitted other health stuff that doesn't directly relate here.

Since Mikey was about a month old, I've suspected that he's aspirating his food. I only knew about aspiration because of a close friend's son's struggle with it, and I hoped I was being paranoid. The pediatrician ordered a modified barium swallow (MBS), and it was on the calendar for almost two months away (yes, that's a normal wait time). In the meantime, we were following through with our existing chiropractic, CST (Craniosacral Therapy), pediatric and cardiology appointments. The week of the MBS, we decided not to do it. Mikey was doing better, and we didn't want to traumatize him for no reason. Our practitioners were all supportive.

The next week we went to the cardiologist for a followup. They did another echo (they'd done one and a half prior...yes, a half), and they spotted something suspicious that they thought was a vascular ring (specifically, right aortic arch with aberrant subclavian and left ligamentum, to my best understanding). It turns out the ultrasound technician originally thought she saw it on the first echo - hence the half echo to double check, but they didn't pursue it at the time. The doctor ordered an MBS to follow up on it this time. It's good we didn't have the first one the pediatrician ordered or they wouldn't have been looking for the vascular ring when they did it, and he'd have had extra radiation for nothing (even though they might have seen him aspirate and followed through from there, but the path would have been much more convoluted). This MBS was scheduled for a month away. We proceeded to go to another cardiologist for a second opinion. He gave us the same report, including the recommendation for the MBS.

Thursday we went to Phoenix Children's Hospital in Phoenix for the MBS. We figured we'd be home after lunch. The test showed he was at high risk for aspiration for thinner fluids and actually aspirating thicker ones. They told us we were being admitted for a feeding tube because Mikey cannot have anything by mouth. They took us to a "counseling room" while they called our doctors. In case you were wondering, "counseling room" is code for "containment room" for parents to have whatever reaction they are going to have. Yet they didn't have any Kleenex in the room... We were in there for an inordinate amount of time while they didn't get ahold of the pediatrician (who, it turns out, doesn't have privileges anyway) and played phone tag with the cardiologist. Once the cardiologist said though he'd never done it before, he'd put in the order, we were sent to the waiting room (full of people wearing masks...real comforting). By this time, Mikey had been four hours plus without food. Mike got him to sleep while we waited another THREE HOURS for a room, which we got only because the wonderful speech pathologist circumvented the system. After more than TWO MORE HOURS, the hospital residents finally put in orders for an NG tube. (No, the cardiologist did not accomplish what he said he would.) By the time Mikey got his first feed, he had been TEN hours without food. It was obvious we were spending the night at this point.

Friday morning, Mikey had an upper GI, which revealed a blood vessel pressing on the esophagus. The next step was a CT. While we waited to hear when our CT was scheduled, we were surprised first with an EKG and then with a chest x-ray. We still don't know why they did the x-ray, but I suspect they were looking for damage to the lungs. As we left that, we were informed that we were being taken for an echo. Everything looked good, but the echo again showed little improvement in the hole, so that surgery becomes even more probable. (A story for another day...) The CT was - amazingly - scheduled for Saturday morning.

The CT almost didn't happen because a) they put in the wrong size IV and b) Mikey was upset. The tech said we had to reschedule for Monday and put him under general anesthesia. I tried to figure out something, and she decided to try to let him fall asleep. We had success, and she felt confident doing the scan. The CT showed that the aortic arch is pressing on the esophagus. The good news is it's not pressing on the trachea, a condition which would require immediate surgery, like Monday morning. I couldn't get an answer about whether it is, in fact, a vascular ring. (I can't imagine what else would cause this condition, though.) We will get the details at our cardiology appointment on April 7th. We were told that the surgery would probably be around the end of April or beginning of May, and the NG tube will probably stay in until he is recovered from that surgery.

The good news is the vessel is almost definitely causing the aspiration, which means the surgery should fix that!

This is good news, really. Sure, surgery is bad, but we caught the aspiration before something bad happened, and we will be fixing a series of problems with one small surgery. Who knows what more is being affected by this condition, too!

I didn't realize anyone would see this situation as so dire and heartbreaking as some of you did. Yes, it's very serious, but he's not sick. I should have sent out more than just the facts. He was happy and laughing and smiling and playing, just as he should be. Sure, he got cranky, as any baby does, especially one who is out of his environment, teething (yes he got another tooth while we were there), gassy and tired of being in the same position a lot of the time. Plus, getting used to the tube feeding takes time.

So... Don't cry. Don't feel sad or bad for us. Instead, praise and thank God, who laid out a path that led us to a "cure" and protected Mikey along the way.

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