Born @ 27 weeks
2lbs 7oz

Thursday, March 27, 2014

Preemies in Space

Well... err. Aero something.

Actually Denver Children's AeroDigestive Clinic.

'Same. Same.' as they say in Indonesia.

We first heard about this Aerodigestive clinic when we found our Pediatrician in Denver. He descibed Shaw as 'the perfect storm' a culmination of weak lungs, narrow airway, food aversion (at least initially), reflux, and more...

We were accepted to the program and our meeting is next Wednesday.

The Aerodigestive Program is the comprehensive management of complex airway and digestive tract disorders. The Aerodigestive Clinic is an opportunity to have very specific specialists in the SAME ROOM, talking to one another to develop the best plan for our son.

Next Wednesday, in ONE ROOM, Shaw will see Doctors from the following disciplines:

- Clinical Nutrition
- Digestive Health (GI)
- Feeding Therapy (Speech)
- General Pediatrics
- Otolaryngology (ENT/Airway)
- Breathing Institute
- Respiratory Therapy
- Speech Pathology
- Surgery

While we have been meeting with most of these specialists individually for the last three years, this clinic provides a rare opportunity to have the heads of all multidisciplinary programs together designing a cumulative plan for Shaw.

Often, I meet with a particular Specialist and say, "Shaw is on xxx and xxx medicine. Can we reduce it at some point or stop it all together?" And they will say, "Well, it is probably best to stay on the medicine because Specialist "X" recommended it."

Or we have been in the hospital on more than one occasion and have said "He is on a ventilator, when will his lungs be strong enough?" And the Pulmonologist (lung specialist) will defer to the ENT, saying he 'thinks' it is more of an upper airway issue. So we will wait until the ENT comes and we will relay all the information from the Pulmonologist and hope that we translate appropriately.

You can imagine how ecstatic we are to have these doctors talking together.

Yesterday, we received a call that Shaw will need two procedures complete before the appointment next Wednesday. Both involve barium to watch for aspirations and monitor how he processes intake throughout his upper esophagus and GI track. Both also have to be done 48 hours apart from one another and 48 hours before the event on Wednesday... That leaves today and next Monday.

Fortunately (or not, for the children), Spring Break starts on Friday, so we have some freedom to do what we must for the clinic. We will spend most of next week focusing on the clinic, as well as meeting our new PT, OT, ABM and Orthotist (potentially getting fitted for orthotics).

So here we go... I woke the boys up at 5:30am for a special breakfast because they aren't allowed to eat or drink anything again until after the procedure. :(

Let Spring Break begin...

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