Yesterday we traveled to CHOP for follow-up appointments. We saw Dr. Blinman first with the GERD clinic. He initially thought we would need to repair Ian’s hernia after hearing about our in-house stay last week. After watching Ian for about 10 minutes and seeing how well he was doing... he decided to postpone the surgery. He told us the older and bigger and stronger he is, the more successful the surgery will be. The repair will be much more intricate and longer than the initial surgery. In addition to repairing the hernia and completing the 270 degree Toupet wrap, he first has to undo everything that was initially done. Since there is more scar tissue this time, it is harder to avoid trauma to the vagus nerve. Ian already has vagal troubles, so this is very important.
He miraculously told us that corn starch can cause diarrhea if he is getting too much. I never would have thought this. Since corn starch makes things thicker, I would have assumed the opposite. He decreased Ian’s corn starch consumption by about 5-10% to alleviate some of these symptoms.
While admitted to CHOP last week, the formula room was using distilled water to make his food. This is different from what we do here in Virginia. Although his dietitian said it is unlikely that the water would cause a problem, it wouldn’t be unheard of. Since he has been drinking the same water since infancy, it seems strange he would have troubles now. Well, once Ian was home for 2-3 days, the diarrhea returned! We switched him to distilled water 3 days ago, and the poops have been much better.
We are hoping that the corn starch decrease and the switch to distilled water will keep things moving in the right direction. It was their impression, and the impression of his pediatrician today that the recent diarrhea troubles since being discharged from “the Bug,” are diet related and not from the positive Norovirus diagnosis last week. It is funny sometimes how doctors will diagnose Ian for things that just don’t seem right, only to have another doctor swoop in and figure it all out. That doctor is usually the GERD clinic surgeon at CHOP. Unfortunately, when we were admitted, he was out of the country for the week.
Afterwards, we traveled down a few floors to follow-up with GI. We did this simply as a courtesy and clearance because they saw him as an inpatient. Dr. Blinman’s group does an excellent job of monitoring and helping Ian with all of his GI issues. As the GI doctor said “Dr. Blinman does things... (long pause)... differently than the rest of this hospital.” She finished with saying that he does however help lots of kids. It seems as though most doctors criticize a lot of Dr. Blinman’s efforts and theories. Ian has never fit into the cookie-cutter and Dr. Blinman has always had answers for us.
We were able to come home afterwards and spend the night in our own beds. This morning we were up and running again. Ian had two appointments today that were also follow-ups.
The first appointment was with the Pulmonologist. He had a lot of good things to say about Ian, his weight, his progress, his developmental play, amongst other things. Even though he is a Pulmonologist, he has always been an all inclusive GERD physician as well. He is very familiar with the GERD and airways relationship as well as systemic motility issues. He is also very familiar with Nissens and their after-surgery issues.
He had a few suggestions for us. He moved Ian to only evening Prevacid. He will still receive the 15mg Solutab, but it will be all at one time at night. In the morning, we are going to try giving him a small amount of Orange Juice with Calcium and Vitamin D. Since calcium and iron need an acidic environment to be absorbed, and proton pump inhibitors for GERD suppress all the acid, long term acid suppression medications interfere with minerals, leaving bones to be more brittle and weaker. We will try the OJ soon and see how it goes.
He was an advocate for the ear tube surgery on 4.26.2012. He said he would not be surprised at all if once the tubes are placed, Ian begins talking. With all the chronic fluid in the ears, he mentioned it sounds like always having water in your ears. Even though he can hear, it is distorted and muffled sounding. This was an interesting thought and I am hoping it will help.
The Pulmonologist also thinks that with all the motility and GI issues that there is some type of central nervous system component. This is really no surprised because we know about Ian’s vagus nerve issues.
Our second appointment today was with the Pediatrician. She was very accepting of all the information and had good things to say. We all seem to be on the same page now and moving forward. Tomorrow we begin feeding therapy again on a weekly basis. This will still be on an outpatient basis. Dr. Blinman has given us clearance to skip a meal on these days so that Ian will be hungry. We will only be able to do this on feeding therapy days for a while until he is able to consume enough during those things to make up for more of the calories lost.
We discussed Ian’s vomiting with Dr. Blinman yesterday. Most of Ian’s vomiting is centered around oral stimulation and eating. This is most likely due to dysphagia, painful and troubled swallowing. Nissens are notorious for this. What happens is he struggles to get food past the Nissen, especially with the hernia present. It is also painful for his esophagus to push the food and slide past the surgery. They feel that Ian may soon hit a road block with feeding therapy even when he wants to eat due to this. Even if you are hungry and want to eat, if it is painful or too difficult, you will stop doing it. If this occurs, they will need to repair the hernia.
The idea of inpatient feeding therapy programs is still in the back of our minds, but without knowing how the outpatient care will go, and the dysphagia component, it is not appropriate at this time. An inpatient program would not be successful with a strong dysphagia component.
All in all, we seem to be gathering even more information about Ian every day now. He is quite the puzzle and always keeps us on the verge of the next adventure. Tomorrow we begin the feeding therapy adventures. Keeping my fingers crossed he will at least enjoy some of it! More to come as the changes keep on rolling in.