And Now He's Better

Nicholas failed his most recent swallow study. I don't honestly remember if I posted anything about that but he did. A swallow study is exactly as it sounds. Barium is mixed with things that Nicholas eats (a bottle of formula and some purees) and then he swallows under an x-ray while a radiologist and speech therapist watch to see what happens.

It was frustrating for Mike and I because we had very high hopes that he would pass. His speech therapist was sure he was doing fantastic and was surprised also. What we found out was that he's still silently aspirating approximately 50% of the time. So basically, one out of every two swallows he is aspirating at least some of his food. That's a big issue because when you put food into your lungs you increase the likelihood of pneumonia. It was determined he's still not safe to eat by mouth and that we would schedule another study soon. The speech therapist believes he may have aspirated more than he normally does because he's teething right now and has lots of extra drool. Either way, he's still 100% tube dependent.

I will be totally honest and say that I have viewed Nicholas's g-tube as an albatross around his neck. I know that we had it placed in the hospital to get him discharged because the NICU wouldn't discharge him until he was safe to eat, and eating by mouth was not going to happen (he was aspirating approximately 75% of the time on his NICU swallow study - so huge improvements in only 7 months), so we agreed to the g-tube surgery and learned how to tube feed him. I will admit it's been rough on Mike and I (mostly Mike) to take him to speech therapy two times a week, week after week, and to continually hear that he's still NPO (not allowed to eat by mouth). I sigh every month when his box of supplies arrive and we dutifully put away the bags and pack away the extra Mic-key buttons and g-tube extensions. I try very hard to not let this show because in the event that he needs to be tube fed when he's old enough to realize, I don't want to discourage him or make him feel like he's "different" but it's been frustrating.

Today as we were walking home from taekwando, Zach was talking to me about a conversation that he had with his friend at school. He said, "I told her that I used to go to the hostible a lot and then Nicholas got his g-tube and now he's better and I don't have to go to the hostible anymore." It stopped me in my tracks. Because he's right. We used to have to go to the hospital every day. I used to have to go home every night and leave my youngest child sleeping in a hospital bed ten miles away, being cared for by nurses (phenomenal nurses, don't get me wrong, but not being cared for by us), I used to have to check myself out of the unit to use the bathroom and then scrub in and check back in to see him. Then he got his g-tube and he came home. I had let the frustration of him failing his swallow study consume me to the point that I forgot what the g-tube had once represented - freedom to bring our child home. 

And really, if the worst thing that comes from Nicholas's hydrocephalus is a g-tube, I am pretty sure we are among the lucky ones. If there's one thing my kids have taught me over and over is that everything will happen on their timeline and not one minute sooner. So I will give Nicholas his time. If he never is able to eat liquid by mouth then that's that. If he uses a g-tube until hes 5, that's that. I will stay patient and remember this is not my journey to walk and that getting frustrated will do absolutely nothing but make me frustrated. It certainly won't help a 9 month old learn how to not aspirate.