Getting a Diagnosis

    Our time in the Burlo Garofolo hospital in Trieste, Italy was filled with ups and downs.  The staff was kind, understanding, and very knowledgeable.  The language barrier was difficult to navigate, but the help and comfort were indescribable.  These doctors knew what they were talking about, and they brought in staff members to help translate for us.  They truly did everything in their power to get us answers, and I am incredibly grateful.  That accidental check-in turned into a full week stay.

    All that being said, it was still difficult to ask questions...some things just don't translate well.  It was unnerving to not know what the nurses needed throughout the day.  Several of the nurses didn't speak any English so it was a guessing game if they wanted to him to take meds or take his weight throughout the day.  Though I have to say they went above and beyond to comfort us.

    Only one parent could stay outside of visiting hours, which meant that our week there was full of shuffling.  Derek and Riley slept several nights in an Airbnb, and he drove Riley an hour and a half home to stay with friends so we could focus on Grayson for his procedure days.

    I was filled with doubt and fear, and much of the time it felt like a surreal experience.  We played games, did puzzles and drawing, and even enjoyed some loving care packages sent by friends.  Later in our stay, Grayson was even up to walking down the hall to the activity room that had a couple puzzles, foosball and clowns...yes real dressed-up clowns.

    Before going to Trieste, Grayson had lost 20% of his body weight over a 2 month period and weighed about 40 pounds one month before his 8th birthday.  Getting him an IV in was nearly impossible because he was so thin, it took multiple tries and they each fell out after a couple of days so he had 3 during the week we stayed.  Over the year we had been seeking help he had slowly stopped enjoying fun things he had always done like playing on the trampoline, basketball, or swimming.  He was not the same fun, loving kid he had always been.

    There were so many things out of our control, and it was honestly easy to dwell on those.  Everything in me wanted to panic as we found out the diagnosis of Crohn's Disease, but we saw so much provision.  The doctors were so kind and invested.  My cousin had previously worked at a peds GI and helped to explain some of the things that didn't quite translate.