Tuesday, July 16, 2013

Feeding and GI updates

The boys had a nice birthday on Sunday. We traveled north to Green Bay to attend my grandpa's 80th birthday and homecoming. We stopped at Bay Beach beforehand so the boys could get in some fun after the 2 hour ride. Bay Beach is a childhood staple of anyone growing up in NorthEast Wisconsin!

The boys love running around my grandpa's yard and they even got a candle on grandpa's cake too. It was a really nice day, and we loved seeing my grandpa look so great.

For the last two days, the boys and I have been hanging out at Children's Hospital for Jax's 2-day outpatient Feeding Clinic. He did 4 meals with a feeding therapist and/or psychologist, and he did well. He was much more gaggy/pukey for the first two meals, but they did teach a great breathing activity to relieve the feeling to puke once he gags. He blows a napkin and it's working pretty good.

The GI Specialist met with us briefly today per my request yesterday to discuss Jax's current vomiting issues. He's been vomiting 1-3 times every day for the past month. We assumed it was from his cold last month, but it can't continue to be from that. The GI doc said it's been too long to just ignore, and he wants to perform a scope (EGD). Jax has had two or three scopes as an infant, so I'm familiar with the procedure, but I'm still not happy that Jax will have to go through general anesthesia for it.

The doc wants to test for a thrush infection of the throat which can be caused from using inhaled medication (his daily asthma meds) and to test tissue samples for EOE and other GI related disorders/diseases. The scope will also check for any physical issues like ulcers etc. The original scopes performed on Jax didn't give us many answers, but I don't recall tissue being tested for anything. Back then the GI doc said that if Jax had EOE, that his treatment would've been the formula he was already on. But now the current doc is saying that he needs to be tested and things can change dramatically over the years.
So, while we don't want to 'do' the procedure, we can't just ignore all the of the new unexplained vomiting that Jax is having. Watching him in pain and knowing he's losing precious calories is just heartbreaking some days, even though he jumps up and says, "I'm fine!" the moment he's done! The boys have their 5 yr physicals with their pediatrician on Monday, so we'll run it by her for a second opinion, although, I have a feeling she'll agree to check things out.
I'm expecting a call this week to schedule the procedure. Otherwise, we'll just keep pushing his feeding therapy as much as possible. He was doing decent with banana at the end of a straw today, so we'll keep it up!

Bay Beach rides!

Nana and the boys by the Bay

Train ride!

The boys with Grandpa for his 80th and their 5th!

Loving all their birthday gifts

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