C had a follow-up appointment yesterday at the Children’s Hospital of Wisconsin GI Clinic. Thankfully, we were able to transfer back to his original GI doctor. I am so glad. In about one hour yesterday, I learned more about C’s g-tube care than I did in an entire month from the other GI doctor and his nurses. They actually explained things to us and didn’t just expect that we already knew all about g-tube care. I feel like there are a lot of components that were covered in this appointment, so I’ll break it down into sections.
When we first met with this doctor, C was off the bottom of the BMI chart. His growth and overall nutrition were major concerns. I’m excited to report that C is now in the 25th percentile for both height and weight! They are actually reducing his calorie intake because he is gaining 35 grams/day and the appropriate daily gain for his age/proportion is 4-10 grams/day. It’s kind of funny looking at his growth chart, because it’s basically a vertical line!
I laid out C’s symptoms and his response to the Zantac, and this doctor agreed that he is experiencing reflux. Unfortunately, Zantac is not the best acid blocker; however, he doesn’t want to make changes to his meds right now. We may discuss switching to a better acid blocker in the future.
Delayed Gastric Emptying?
Some of you mentioned this to me as a possibility, so I did a little research on it. I think it is a very good possibility that this is what C has had since birth. C only drank an ounce or two at a time as an infant, was never interested in solids and was more hungry at breakfast than at any other time of the day. In fact, he would often skip dinner altogether. Now that he is tube-fed, his first two feedings go pretty quickly. His last two take quite a bit longer and stomach contents are often pushed back into the syringe during his final feed. Every time he has vomited a feed, it has been after the final one.
The doctor agreed that it would be a good idea to have a test done to see if C’s stomach is emptying properly. There may be a slight issue, though. There is a liquid test and a solid test. The solid test is more effective at revealing delayed gastric emptying, but that would require C to eat some scrambled eggs. The liquid could go into his tube, but again would be more effective if he drank it orally. I really hope we can get him to eat some scrambled eggs!
I was concerned about this, because I read that one of the drugs used for treatment can have a permanent neurological side effect in children. Thankfully, that drug was not mentioned. He said this could easily be treated with a low dose of an antibiotic that speeds up gastric emptying.
C is scheduled to have this test done on Thursday morning before his clinical feeding evaluation with a speech therapist.
Things look good! The staph infection is clearing. There is some granulation tissue, but nothing concerning at this point. We learned that granulation tissue develops due to tube movement. It’s hard to keep the tube stabilized with an active two-year-old, but they said that we are doing a good job. We can also apply any type of butt cream (desitin, a&d, etc.) to the skin surrounding C’s tube site and that will protect his skin from any fluid that leaks from his tube site. Fluid leakage occurs when the tube moves, and the fluid is very acidic. Hmm…that would have been nice to know a month ago!
At one point, the doctor said, “I understand your concerns about the discomfort he is in right now. However, I believe these are small bumps in the road and what C really needs is the intensive food therapy that the feeding team can provide to teach him how to eat orally.”
We will be working to make him more comfortable by tweaking his feeds. On Monday, we will be getting a pump to use for his final two feeds. Then we can regulate how long his final feeds will last and they will enter his stomach at a consistent rate. He will be getting 3.5 cans of Pediasure per day instead of 4. We’ll see how that works. If he’s still in a lot of discomfort and vomiting, then we will be talking about overnight feeds via the pump.
We’ll see how things go for his gastric emptying test and clinical feeding evaluation on Thursday. We are on a cancellation list for feeding team and will be contacted as soon as there is an opening before our October 30th appointment. Since people come from all over the midwest to see this feeding team, I highly doubt there will be any cancellations!
I’m really happy we’re back to seeing this doctor – and that is thanks to you for your help! Thank you all for your kind comments, tweets, prayers, well wishes and love. Your kindness and support are deeply appreciated.