Friday, September 18, 2015

Light at the End of the Tunnel

Hello friends!  Another day, another half day spent at Nationwide Children's Hospital.

First off, we attended Music Therapy today and oh, how Colin loves music (and bubbles)

The person who heads up music therapy has been singing to Colin since the first week that he was in Columbus.  We love the consistency of seeing the same people as when we were in the NICU.  We also see the same speech therapist in both clinics that we saw while in the NICU.

Then it was off to clinic.

Poor guy had to get his flu shot today.  He didn't have to, but I figured that we would just get it over with.  Then it was the typical parade of doctors that we see at his Aerodigestive appointment.

"Can we just get this over with, mom?"

First was GI. We talked about his Impendence study results (which found that his reflux episodes were within normal range).  We also talked about him getting a stomach emptying study to see how he was digesting (which I think is one of his big issues).  We are going to go full swing into a blenderized diet, which we have already started easing him into, but his new GI doctor is all about it.  We've had some problems getting others on board with it, but that's a whole other issue.

Then it was ENT and Pulmonary.  We see Dr. Ramanathan, whom we love (and everyone on the pulmonary floor of the hospital loves him too, it's always good when the nurses love a doctor). After discussing with him that Colin has been capped and handling it amazingly, he wants to go ahead with a sleep study.  Typically when the sleep study is done and IF it's successful, this means that the trach can come out.  He brought up that they don't like to decannulate during cold and flu season, but I made sure he remembered that Colin was not hospitalized one time last winter, so he is willing to go ahead with it, if he's ready.

I am not getting my hopes up.  Colin may not be ready, but the fact that we're talking about it is still exciting.  Everything will be just fine if he still needs his trach for a while.  Sure, I'll be disappointed if the sleep study doesn't go well, but it just means that he needs more time.  I don't want them to take it out if he's not ready.  I've seen stories about kids that have been re-trached and I certainly don't want that to be Colin.

We would love your prayers in these coming weeks/months regarding this.  Prayers that we can figure out how to eliminate his vomiting, prayers for his sleep study, prayers for good news and success.  It is all in His hands.

Dr. Ramanathan's last words to me were, "We're close!  I can see the light at the end of the tunnel."

Love to you all.