It takes a lot of phone calls and messages and online research and talking with other special needs parents to “make the call.”
Decisions like: What to feed a child who is malnourished? How about constipation prone? How about through a tube? All kinds of decisions that aren’t quick to answer. What do I do if I don’t like a doctor? What if they don’t like me? haha
Different fruits of my labor:
A healthy meal plan, complete with calorie counting, the ability to feed in Daniel sized portions (even when mixed with water so it can go through a tube), constipation friendly, not overly high in fats, nutritionally balanced, and it even overlaps with Jordan’s blended meals. I’d like to just feed him what the other kids are eating, but through the tube, but so long as I’m working with such a skinny child, I’m going to count calories and do the extra work.
I’ve decided that we’re going to go forward with getting a G-tube. That’s the “button” or tube that is surgically inserted into his stomach through his abdomen. It’ll get the tube off his face, but more importantly, out of his throat, so that it will be more comfortable for him to eat by mouth. He isn’t physically stable enough to support a few months of refusing food and water at intervals like Jordan was when he learned to eat even through anxiety. (Jordan accepted just enough food and liquids to not get a tube… and he was not as skinny as Daniel is. Daniel doesn’t have the room to refuse food.)
Ummmm, I’ve put off as many appointments as possible to give him a chance to feel as safe and stable as possible. Medical appointments are stressful for him. They’re stressful for me and the family unit also. A trip down through traffic into Portland for a one-hour appointment wears me out for the entire day… and we are gone from the house for half the day after driving… and all the time getting out of the house before we leave so that everybody is fed, diapered, toileted, dressed, has toys, etc. Man, it’s grueling. (I have Jordan too, you remember?)
Anyway, my mind is wandering. My room is messy. The learning is happening. I have a mixture of a good medical team and a clueless medical team and between the two, we’re going to get Daniel’s little body healthy even as we work on helping his heart and mind to heal.
November: G-tube and Diaphragm eventration appointment with pediatric surgery
December: Jordan ear tubes and follow-up. Also, probably G-tube surgery for Daniel and another GI follow-up where I try to get the other formula approved again… also trying to switch providers
January: First Shriner’s appointment, surgery for undescended testicles, unknown GI involvement
February: Feeding clinic appointment on the calendar so far
Time to take Anna to ballet and go to the grocery!
I’ll post cute pictures as soon as I find where Daniel has scooted the USB cord off to.