Just Kidding

I have discovered that all the big things and all the small things add up.

And I usually don't cry until something small tilts the already heavy laden scale.

Such was my hospital day yesterday.

Ayden did not do well on his swallow study yesterday. Ayden has a fantastic suck, and he loves eating, but right now, he is not swallowing correctly. Part of the food goes down his throat, and part of it goes down his windpipe. The worst part is that Ayden doesn't even recognize that food is going into his airways. He doesn't even cough. He just continues to enjoy his eating.

The speech pathologist believes that his inability to properly swallow is vocally-related. While Ayden can coo and grunt, he has yet to regain his vocals. One can look at him and see that he is crying, but one cannot hear him cry. (I understand the necessity of a ventilator, but being intubated causes a whole mess of problems, such as this one... especially when you have a kid that fought the ventilator like he did!)

Since Ayden did not pass his swallow study, they took away his PO feeds, so there will be no more bottle feeding. In addition, they have moved Ayden's feeding tube to NJ, which means that it is no longer placed in his stomach; instead it is in his jejunum. Since the tube is NJ, he also must be on continuous feeds, rather than bolus feeds. The argument for moving the tube to NJ is that he MIGHT reflux, which would be bad since Ayden has shown in the swallow study that he would just inhale the food.

So, Ayden went back to square one, and we shall see how he does at the next swallow study next week.

Now, while none of that information is the end of the world, I still feel disappointed. I'm not disappointed in Ayden, of course. On the contrary, I am not sure that I could be more proud of our little man. (He was on ECMO two weeks ago, and look at him now!) My hope has just been that Ayden will be able to do all the things that he could do before we ended up back in the PCCU. While failing this first swallow study does not mean that he won't be able to eventually go back to bottle feeding, the event nonetheless felt rather crappy. And, unfortunately, since Ayden has been NG (feeding tube in his stomach) for the past few days, he will be able to feel emptiness in his tummy as a result of the feed now bypassing his stomach and emptying into his intestines. That sensation of emptiness will make for an upset baby, and it's hard to watch Ayden experience that feeling.

On another (much more encouraging) topic, they hope to move Ayden "to the floor" today. Our family will be glad to be back on the 6th floor. I miss the atmosphere and the staff. I know Ayden misses his girlfriends, though they have all been more than faithful in visiting him over the past two weeks. Hopefully, our next posts will be with Ayden more comfortably on the floor.