I'll start with the Joshua update: He currently gets 12 ounces of Pediasure per day through the G-tube, which is usually 1/3 - 1/4 of his daily calorie intake. The team approved us to drop that down to 9 ounces but to try to replace the additional 3 ounces with a nutritional supplement juice drink called Boost Breeze. We are two days into this plan and it seems to be going well with the juice, so this plan might be the thing that eventually gets us off the feeding tube.
The thing that's a little scary about heavily depending on a juice drink is that, like all of us, Joshua sometimes gets tired of things he consumes a lot of and then refuses to eat or drink anymore. (This happened with Pediasure.) If he tires of the juice, we don't have a good back up solution. Because the list of foods Joshua will eat is very short and very low calorie (mostly fruits and crackers), the juice is a good short term fix, but eventually we need him to be eating "table foods" (especially meats, grains, and veggies) to get enough calories and nutrients. So those of you who are so kind to pray for us, our prayer request is that Joshua eat a wider variety and a greater volume of food, especially the kind of foods you would eat in a normal meal. The doctor was encouraging that he would get there, but that it just takes awhile.
I feel good overall about where he's at, but the appointments regarding his feeding plan always leave my head spinning. It will be good to get to Reno and take a few weeks off from appointments.
And for part two, here are two of the most helpful doctors we've seen: developmental pediatricians and rehab doctors (also called physiologists). Though their focuses are different, I think they are helpful for the same three reasons:
1) They take a comprehensive view: If your kid has special needs, you will see a TON of doctors and health care professionals, and they will all run their own sets of tests, evaluations, and procedures. Joshua, for example, has seen pediatricians, developmental pediatricians, pulmonologists, orthopedists, audiologists, otolaryngologists, neurologists, geneticists, anesthesiologists, gastroenterologists, dermatologists, plastic surgeons, ophthalmologists, physiologists, pediatric dentists, emergency physicians, neonatologists, intensivists, hospitalists, speech therapists, physical therapists, occupational therapists, feeding specialists, nutritionists, and social workers. You end up with a ton of information, but not necessarily a clear picture of how it all fits together or how it relates to your day-to-day life with your child. These doctors have the medical training to understand how all this mountain of medical information fits together, and how it relates to developmental delays (in the case of the developmental pediatrician) or life functions (in the case of the rehab doctor).
2) They come up with a practical treatment plan: Once they have helped you assess what medical issues are causing your child's developmental or functional problems, they help you figure out a practical plan for moving forward. And they recognize that there are many factors involved in addition to what will work best medically. For example, they think about whether insurance will cover the things they are recommending, whether it will realistically fit into the family's schedule, etc.
3) They manage expectations: This, for me, is the biggest one. Some of our specialist doctors seem surprised that Joshua still uses a feeding tube. The anatomy of his mouth has been repaired so that he can swallow fine and his airway is no longer obstructed, and they don't seem to understand that there can be a lot more to it than just fixing the mechanics. But the developmental ped and the rehab doc understand that Joshua's medical history would explain severe oral aversions, might involve a learning curve in connecting hunger with oral feeding, etc. They reassure us that even though his progress seems slow, it's not outside the normal range given his situation. They seem confident that he will graduate from the feeding tube eventually, but are realistic in telling us that it could take many more months. I don't mean this post to denigrate the other specialist doctors - they are all an important part of the puzzle, and the dev. ped. and rehab doc couldn't do their jobs without the information provided by the other specialists. (Also, many of our other specialists are extremely knowledgeable and kind and just all around wonderful human beings and I'm glad to know them.) But as the parent, you may feel more helped, supported, and understood by these doctors than by all the others.
For those of you who have seen a long list of doctors for yourself or your child, i would be interested to hear who you think is most helpful?
