August 14 - Gastroenterologist

Today we took Max to see his Gastroenterologist, Dr. A. It was a good thing that Melanie was proactive (as is her usual wont) and visited Dr. A's website and found a 6 page intake form in PDF format. She already had it printed and filled out before we left home. This would surely speed things up! Dr. A's office is in the same pediatric pavilion that Max' older sister Meaghan had her Myringotomy (ear tube) surgery.

So much for things going smoothly. As I was getting Max out of the car, his feeding tube became caught and pulled out. Great. That's the third time in less than two weeks he's been home. Now Max is crying. His feed was just scheduled to get started and we're not even inside to begin the visit. Max will be now be at least 90 minutes late for his feed.

"Wait", we think. "Dr. A is his gastroenterologist! His feeding tube physician! Surely, he'll have a new feeding tube and multiple people qualified to reinsert it." What great serendipity!

That elation was short lived. The answer to the above speculation was "no" and "yes". Lots of his staff know how, but feeding tubes are not something he stocks in his office. Crap.

I wish I had Dr. A's energy. He appears young for the number of years of his experience and exudes a very positive vibe. I think he's near the top of my favorites of all Max' physicians - and that's saying something. Like Max' pulmonologist, Dr. A had a medical student shadowing him who was also interested to observe Max' unique condition. She had come all the way from Atlanta, GA. Dr. A has some reputation.

Our primary topic of concern with Dr. A is Max' feeding tube: NG-tube vs. G-tube. The NG-tube has been problematic in its risk of getting easily pulled out, the trauma of frequent reinsertions, the increased risk of aspiration, the obstruction of breathing pathway, and the interference with swallowing (causing an eventual oral feeding aversion). However the G-tube is a surgical implantation of a valve in the abdominal wall. The surgery itself carries the most risk. If the surgery and recovery go well, the maintenance of a G-tube is much easier, safer, and more comfortable than an NG-tube. There are two main risks with the surgery: 1) because of Max' thrombocytopenia (low platelet count), there is an increased risk of internal bleeding, post-op healing delay, and other miscellaneous complications, 2) Max would have to be intubated for the surgery and there is a risk (supported by his previous intubation) that he would "get lazy" and not respond to coming off the ventilator. Because of his PDA heart defect, he becomes fatigued easily. Even breathing can be a struggle. There is a risk that his body would take to the ventilator since it would be taking over the work of breathing and resist being weaned off it. Normally, such operative intubations last only a day or two. The last time Max was ventilated for two weeks and then on CPAP for another couple of weeks after that. The whole time he was resisting having to breathe on his own. However, Max was a VERY sick baby in the early days. He's come a long way since then. How will he respond now? We don't know. Some decisions are very hard.

So we now have an appointment (Aug 25) with the same surgeons who did Max' heart surgery. After meeting with them, they may immediately put the kibosh on any surgery in the near future, rendering the point moot. Considering how his last surgery went (see blog archives for details), I'm sure they'll be cautious. I trust their judgement.

At the end of Dr. A's visit, he ordered up more blood work for platelet count and liver function. Max hasn't had LFT since he was discharged from the NICU two weeks ago. Unfortunately, the lab is at a separate facility. Max' NG-tube was still out and was very late for his feeding by now. We decided to fall back and punt. Put off the blood testing until later in the afternoon or the next day.