Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Friday, November 2, 2012

1 year later

I never did write anything on Trey's 1 year post-surgery date.  I wanted it to be a big day... a type of closure for us and in a lot of ways it was... but I didn't know how to put it into words.

On the 1 year anniversary of his surgery I delivered cookies to the local emergency room and our pediatrician.  I had also wanted to deliver them to his cardiologist and Inova hospital but the surgeon wasn't in that week so I waited till the following week to go to the hospital.  I knew that Dr. Gebru, the ER dr on call when we went into the ER both times, was going to be working that day so we were excited to surprise him.  I had spent the entire week before hand making, cutting and decorating 115 sugar cookies to thank everyone.  I packaged them up individually with a small note at the top and packed them all in boxes.  We got to the ER and went to the pediatric desk.  Dr. Gebru turned the corner and he looked at us... I could tell he was wondering who these strange people were standing there waiting for someone (Trey came with me).  Then all of a sudden his face changed into pure amazement.  He knew exactly who we were!  He was so happy to see us and vice versa.  I explained to him that Trey was doing great, his heart function is considered to be normal and he is off ALL medications.  He was floored.  It was so nice to see him and show him Trey. I opened the box of cookies and asked him to put them out as a thank you from Trey to the entire Emergency Room.  I thanked him over and over for everything he did while we were in the ER.... 3 times total with 1 overnight stay.  He teared up which made my heart swell.  He told me that me bringing Trey in totally changed his week.  Apparently, he had been having a hard week in the ER and us thanking him had totally changed his mood.  That made my day.

Then I took a box of cookies over to our pediatrician's office to thank them for being so patient with us!  We had a lot of appointments with them over the past year and they've always gotten us right in and back to see the dr so that we didn't have to sit in the waiting room with any sickies.

The following week I went down to Inova and dropped off a ton of cookies to the PICU for the doctors and nurses there.  Trey came with me and we were able to see a few of his nurses, the cardiac team and his surgeon!  We also brought Dr. Shen, Trey's surgeon, something special just for him.... a used Lortone rock tumbler.  Dr. Shen is very into recycling and reusing things.  The man bikes or walks to and from work everyday as well.  After Trey's second heart surgery (when he came off ecmo) we somehow got into a conversation about polishing rocks.  He wanted to find a used tumbler that he could fix and use.  So - that became my mission.... and 1 year after Trey's surgery I was able to get that gift to him.  Apparently he had still been talking about it because when I told the nurses what we had gotten him they were overjoyed!  Finally, they said, he can stop talking about finding a rock tumbler!  I was able to be there when he opened it and he laughed!!  I made sure to tell him that it was bought on ebay... used!  Do you know how hard it was to find a used rock tumbler that isn't going to cost the same as buying a new one?!  It's difficult... very difficult!

Afterwards I dropped off a special thank you gift to our cardiologist.  Trey gave him a superhero tie that we had bought from Etsy (we chose the superhero words pattern)  The special tie was handmade by a mom that has a special child.  Her child has Williams syndrome (which includes congenital heart defects among some other things) and the proceeds from the tie go to research of the syndrome.  She also sells other handmade items in her Etsy store called Petite Peanut.  This allows her to stay at home with her child to take care of him... she's an amazing woman.  We also bought Dr. Callahan a marble pastry board.  Through our conversations in the hospital I have come to learn that he loves to make apple pies and he makes his own crusts (I buy mine!).  I read somewhere that it's best to roll your crust out on a cool surface so it's best to put a marble pastry board in the fridge.  Then you roll the pastry out on the cool marble for best results.

I know we didn't have to do all of this but I wanted all of these special people to know that they were truly appreciated.  I wanted the gifts to be personal.  I wanted to let them know that the conversations they had with me during our stay in the hospital meant something to me.  They helped me stay "normal" and sane.  The conversation about the rock tumbler helped me stabilize after watching them do open heart surgery on my son.  I needed that kind of talk and they were conversations that _I_ will never forget.  I also wanted it to be a kind of closure as well... and it was.  The gifts/cookies were also a project that I could work on and it had a definite ending.

The year is over and we ALL survived.  Thanks be to God.