I hate when I feel appointments are a waste of time. Between medical and therapy appointments, Kiran and I sometimes have exceptionally busy weeks. The next two are prime examples. Yesterday was the only appointment-free day until Monday, Dec. 19th (weekends excluded). Makes this morning’s appointment that much more frustrating, especially when it took 2 1/2 hours from our day.
Nothing could be discerned from the swallow study. The speech therapist and I both worked with him to drink from a couple different sippy cups, his bottle, and take bites from a spoon…He still only gave us three small swallows to see. We were able to see his airway closing – doesn’t mean it always does, but does mean it is capable of doing so. That’s about all we learned.
The talk I had with the speech therapist was both fruitful and frustrating, however. She is the first speech therapist I have met at this hospital that I actually found helpful. I learned it is very common for heart kids to have heart surgery, really take off on their oral feeding, and then backtrack. Sometimes it can be behavioral – other times it can be due to discomfort. She said the sudden drop off of his desire does make her think there may be something going on to cause him discomfort. It may not be aspiration. It may be. I sometimes wonder if it’s simply his acid reflux. Or he had a sore throat at the time and is just incredibly stubborn. Could be any number of things with this child of mine!
When I expressed my frustrations (as I have here before) about the medical team being so quick to put a g-tube in but seeming to have little to no plan or even knowledge of how to eventually get it out, she stated so many parents share this frustration with me. (Sidenote: She also said most are not able to express it as eloquently as I did…guess I’ll keep writing….) She said it was written in my records that I should have been recommended outpatient speech therapy services through Mercy after the g-tube placement surgery. This was news to me. She said her job to get a child off the g-tube starts the day it is placed.
This is beyond frustrating to me. And I could tell it was to her too. She said so many doctors are so focused on getting these kids through the surgeries they need and just assume feeding issues can be handled after. But she was saying she could have been helping us all along with ways to practice, to not develop oral aversions, etc. When I did give her an overview of how we handle feedings at our house, she said it seems, even without the guidance, we are doing everything we should be doing to help him have a positive experience with food and practice skills. Still. I hate that feeling of falling through the cracks yet again on this medical journey. It makes so much sense that this therapy could have helped along the way, and I wish I would have had that resource in place.
But. Here we are. We start from here. She did say – given everything we have been doing with him and all the other information she has read about him – she feels he has a very positive prognosis of being able to eat completely orally again. She said the Childserve feeding team is amazing. All of this was good to hear in the midst of a very frustrating conversation. I do have her number and email address, so I can find her in the future if we choose to do any follow-up on this here in town.
This is probably going to be my second most important cause. CHD awareness will always be number one, of course, but feeding tube awareness will be a close second. It was a medical necessity for Kiran; I have no doubts about that. But had I known early on in our journey everything I know now, I would have advocated so much differently for him. And you better believe I will share that knowledge with any parent going down a similar path (provided they want it…I tend to not be a throat shover).
One appointment down this week. Four more to go.