Tuesday, October 30, 2007

That Darn Reflux

As I've mentioned in previous posts, Max has severe GERD (Gastroesophageal Reflux Disease). He had a Nissen Fundoplication just before discharge from the NICU, and was also given a g-tube so that we could finally go home. He's relied on his tube for nutrition ever since, although he did have a solid oral eating phase for about six months in 2005. Unfortunately, he was not able to consume enough calories by mouth to sustain his weight, let alone continue growing as needed.

Last year, right around this time, Max's reflux episodes (which are characterized by severe choking, gagging and wretching, eventually vomiting really thick mucous) were becoming very frequent and so severe that he was experiencing difficulty breathing. The mucous was just so thick and so abundant that he would have trouble catching his breath, and start turning an awful shade of purple/blue/red. So, we landed in the ER of our local Childrens Hospital, then were admitted for observation. After several x-rays and consultations, it was determined that the quickest way to relieve the symptoms would be to place a gj-tube (a tube that threads through the stomach into the jejunum, the upper part of the small intestine). By bypassing the stomach, it would have a chance to rest from all the wretching, and it would prevent any chance of aspiration. The disadvantage of j-tube feedings is that the jejunum can not handle large volumes, so Max was on more or less a continuous feeding schedule. We were doing well with that, and after 6 months, the GI docs suggested we slowly begin to wean him back to a more physiologically appropriate feeding schedule of 3-4 bolus feedings a day, through the g-tube. After a few months on that type of schedule, we removed the gj-tube, and replaced it with the familiar mic-key g-tube.

Max had been doing really well, with only an occasional episode here and there, usually triggered by lots of laughing after a feeding. We'd have maybe 3 or 4 episodes in a month. Well, over the past couple of weeks, we've seen a dramatic increase in episodes, more like 3 or 4 PER DAY! It's incredibly uncomfortable for him and very worrisome for us. I'm hoping that by decreasing his overall volume and slowing down his rate, we can get over this hurdle. We had been noticing that his respiratory system seems more taxed recently, too (we've had some terrible fires in this area -- southern CA -- and, though we were never in imminent danger, the air quality has been poor for quite some time). There must be some relationship between his respiratory issues and his GI issues.

I'm not sure what we'll do if the symptoms persist. We have some "wiggle" room to continue manipulating his g-tube feeding schedule, even to the point of doing some portion overnight. Ah, well, we'll just have to cross that bridge when we come to it.


Mel said...

I'm sorry you are having a hard time with this. I can see how that would be "worrisome" to say the least. I hope he improves and the air quality there in CA improves as well.

Thinking of you.

Angela said...

I am so sorry Heesun! I really hope you have enough wiggle room to get through this very quickly. It must be terrible to watch him have those episoded of choking and coughing with reflux. Please keep us posted.

Like Mel, I too hope the air quality improves soon. I have read various reflux articles over the years and they always mention smoking can make reflux worse in adults, so it would make sense that poor air quality would have an adverse affect on his GI system.

Give him a great big hug from me and Jack!

Jacqui said...

Oh No. I too hope its just the air quality and that it improves soon.

Special Survivors said...

An update: Max has been doing much better this past week. We slowed down his feedings and decreased his volume by 1/3 and that helped. But, more importantly, the air has cleared and his respiratory system hasn't been so taxed. That seems to have made the biggest difference.

We're slowly working our way back up on his feedings, with the hope that he will not lose too much weight in the process.

Thank you all for your thoughts.