This morning Wendy went to see Dr. Pilzer, her GI specialist. The test results from the pH probe were back and even though Wendy wasn’t vomiting that day it was clear that she had quite a bit of reflux, but not enough for a GJ tube or fundoplication. She is going some days vomiting only once or twice, and other days she may vomit every feed. We’re still not sure if it’s from the reflux, or one of these horrible viruses that have been circulating.
So for now, we continue with the medicine (Prevacid and Bethanechol). We are also moving from 26cal Neocate to 30cal Neocate and every other feed we are going to mix in a tablespoon of baby food. If she tolerates the tablespoon of baby food every other feed, then we’ll move to every feed, then to 2 tablespoons. We are just working on getting her a more diverse diet. We are also needing to help her gain more weight. Tiny princess weighed only 13lbs 13oz today (from 14lbs 4oz at her heaviest before the vomiting). 7oz may not seem that significant, but for Wendy it is; it takes her about a month to gain half a pound so it’s going to take some work to get her caught back up to where she was.
All of these notes were sent to Dr. Wulkan, Wendy’s surgeon, who we see on January 30. On January 30, we hope to schedule her colostomy reversal for sometime in February. While she is in the hospital for her surgery, we are to have another suck swallow study done. Dr. Pilzer said NPO until after the suck swallow study because her eating by mouth is not worth risking a bad choking spell, especially with all the vomiting she’s had lately. But if she passes the suck swallow study, we should begin feeding therapy sometime in February. We’re beginning to wonder if Wendy has a sub mucous cleft palate. Another child with a similar chromosome deletion to Wendy’s had one and that’s why it took her longer to learn to eat. Since they’re not always easy to detect, sometimes it can go unnoticed, but once we start feedings by mouth, we are definitely going to have it checked.
It’s a lot going on at the moment, so we just take each thing one at a time. First getting her to tolerate higher cal feeds, then the reversal surgery, then the swallow study, and finally the feeding therapy. Also, as soon as Wendy gets approved for Medicaid through the KB waiver (I pray she does get approved) we will begin physical therapy as well. Right now, Babies Can’t Wait doesn’t have a therapist that can work with her and no where around here accepts TriCare. Which, of course, as sick as Wendy has been lately therapy is about the last thing we could concentrate on. Oh, and once all of that is done, we need to have her kidneys checked again to see if she still has kidney reflux because if it’s corrected itself, then we can take her off the Bactrim and I’d be happy to see her on one less medication.
I hope I didn’t leave anything out. My brain has been in a bit of a whirlwind, so if I remember anything else I will add on later! As always, please keep my sweet girl in your prayers :)