Our biomedical journey continues...

For the last few months Casey and I had been discussing the sad fact that for the last year Austin has continued to struggle with GI issues that seem to just not get any better no matter what we do.  Treatment would work for a few months but upon completion all symptoms would return within weeks.  

We knew it was time to really get to the bottom of the problem which would require more extreme measures.  After talking with Dr. N (Austin's biomed specialist in NJ) and doing our own research, we all agreed it was time to see Dr. Arthur Krigsman in Far Rockaway (Queens), NY.  Dr. K is a very well-known pediatric gastroenterologist who treats only patients on the spectrum.  

We had our 1st initial appointment in mid-August (after completing a laundry list of testing) and Dr. K confirmed that Austin more than likely has inflammation (probably in the small intestine) that is causing all his GI problems.  Unfortunately he could not officially diagnosis anything with just lab testing though these results were strong indicators that what Austin is going through is treatable.  So our next step was to schedule Austin for an upper endoscopy, colonoscopy, pill cam study, and multiple biopsies to properly diagnose the problems and begin appropriate treatment. 

We were able to schedule these procedures very quickly and knew the sooner the better.  We drove up to Queens on Tuesday and had our Pre-op appointment with Dr. K Wednesday.  We immediately began the prep-process of cleaning out the GI tract.  Casey and I were SERIOUSLY dreading this process and knew it would not be an easy thing to accomplish.  But Austin surprised us with his compliance and genuinely mellow mood.      

Our clean out meds...lovely.  :/

Austin was not allowed solid foods but only clear liquids starting Tuesday night at 8pm until after the completion of the pill cam study on Thursday evening.  He did so great and only asked for food once and it wasn't until the end of the day.  WHAT A TROOPER!

Mmmm...drink those meds!

We were concerned with the amount of time the clean out process was going to take and knew that we would not be to leave our hotel room.  So Casey and I decided to buy Austin his birthday gifts in advance and bring them to NY with us so he would have lots to do while stuck at the hotel. 

Skin and bones by the end of Wednesday.

Thursday morning we were at the surgical center bright and early for our procedures.  I can't say enough great things about South Shore Surgical Center!  They were great with Austin and made us feel as comfortable as possible.  Austin was able to watch Finding Nemo while we waited for the anesthesiologist and Dr. K.

We were able to go into the operating room with Austin and be with him when he went to sleep.  I was so thankful for this!  All the procedures lasted about 2 hours (which were the LONGEST 2 hours of our lives!).  Austin was pretty groggy and loopy when he woke up but everything went really well.  

We were able to return to the hotel fairly quickly to finish the pill cam study in the comfort of our room.  Since Austin cannot swallow pills without the aid of pear sauce, the pill cam was dropped into his stomach during the upper endoscopy.  The purpose of the pill cam is to take images of the small intestine where neither the endoscopy nor colonoscopy can reach.  The pill cam study lasts for 8 hours once dropped so the small backpack in the pic holds a small recording device that is connected to a belt Austin is wearing that has sensors that pic of the wireless signal from the pill cam internally.  Isn't science fascinating!

Here is a better view of the pill cam belt.

Austin was pretty nauseous and not feeling good most of the day due to the anesthesia.  Thankfully he only got sick once in the afternoon and that seemed to be the lowest point of the day.

At 6pm Austin was able to begin eating again...almost 48 hours of no food!  He perked up pretty quickly at this point and we had to actually be cautious of how much food we gave him so he would not get sick.

Austin still had his heart monitor stickers on so we took them off and he began playing with them like Casey was the patient.  :)

Friday morning we headed back to NOVA...SEE YA LATER NYC!

Coney Island

This is how close we were to Manhattan.  Unfortunately no sightseeing for us.  :(  Maybe another time.

The preliminary results from the procedures showed that Austin has inflammation beginning in the duodenum that probably continues into the small intestine (pill cam will confirm this).  Austin also has lymphonodular hyperplasia of the large intestine.  This means his lymph nods are swollen from some kind of inflammation.  He had multiple biopsies taken that were sent to pathology and we will know those results in 2 weeks.  Dr. K will combine this data with pathology and pill cam results and create a treatment for Austin.  He was very confident that what he saw is similar to the classic GI disease that he sees in many of his patients on the spectrum and that it is all treatable so Austin will be feeling much better very soon.  :)

Casey and I are both very relieved and looking forward to our follow up appointment in 2 weeks.  We are so thankful we were able to get in to see Dr. Krigsman so quickly and know that we are on the right track to healing Austin's gut.  :)