Sounds impressive, doesn’t it?
Sounds like it could be the answer to all our problems.
Though I am not naive enough to think that I do feel really good about our plan going forward.
We spent three plus exhausting hours at the outpatient clinic at Dell yesterday. I say exhausting but it really was a pleasant visit. I honestly think we moved through the clinic quickly too because there was barely any wait time in between visits for me to read my magazine. my husband works with many of the staff on CF clinic days. That was a huge plus – just that the doctors and nurses were personally interested in Nathan because of his daddy. During that time we saw ENT, GI, Pulm, another speech pathologist, and a couple of social workers.
Our plan is to head back to the OR and do a triple scope on Nathan – rigid scope, flexible scope, and EGD. This will give us a more in depth airway evaluation to hopefully see what is causing the intermittent apnea and aspiration. Also, try and determine some of the stomach issues that are causing the little guy so much pain with a manometry and rule out Hirshsprung’s Disease. Finally, do a 48 hour Impedance Test to find out for sure if he has reflux issues further complicating things.
Nathan has been having unbearable GI pain for the last month. It’s interrupting naps and his general disposition. He can be just a sweet little baby until a gas bubble comes roaring through. And when he moves stool (like ten + times a day) he acts like he’s dying. It’s awful for everyone. Here’s a picture of him giving me the evil eye when he’s in pain. I’ll spare you the video of him screaming his head off.
Anyway, we are hoping to get to the bottom of these issues and make him more comfortable.
The social work component was also super helpful as I am trying to navigate the many government programs that we have yet to qualify for. I’ll spare you the frustrating details of that. Instead, check out my super cute traveling “filing cabinet” for all Nathan’s paperwork. Thirty-one now has inserts for their bags to hold folders. (Thank you Laura and Tracy!)
When the social workers left my husband said, “Did you understand all that paperwork stuff?”
“When the doctors left I said, “Did you understand all that medical stuff?”
Okay, I think we’ve got things covered.
Little guy wasn’t so sure of Aerodigestive Clinic as you can tell but mommy is really hopeful of the prospect of a more comfortable baby.
Let me also say I think I am doing remarkably well considering the second speech therapist this week told me he’s probably never going to take a bottle. What else could be said that would surprise or scare me? Maybe I shouldn’t be saying that!
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!