July 28, 2015

Whirlwind of Appointments

We successfully maneuvered our way through 5 appointments in NYC in two days. And we are all exhausted!

Yesterday we met with Dr. LaJoie who is back at NYU! We followed her to Long Island and she moved back to NYU just in time for Evan's surgery. The stars are alignment for Evan! The best possible news is that she will be on hospital rotation in August so Evan will be managed by Dr. LaJoie and Dr. Devinsky throughout the surgical process from the neurology side of things.

We stayed at the Ronald McDonald House which is always a beacon for weary hospital travelers. We had a warm welcome from both new and familiar faces and we were so grateful for a catered Mexican feast donated to the families staying there. After dinner "The Bubble Man" was in the house for entertainment. I never realized how relaxing it is to play with bubbles. You have to move slowly and breathe evenly -- I think it was tai chi in disguise!

Today we checked out early to begin our marathon of appointments. Cardiology is a stopping point for all surgery patients and that went smoothly. Evan's heart is perfect so no worries there! One of Evan's PICU nurses from his first surgery in 2007 is in this office so we had a mini reunion!

Hematology was a rough stop. Evan has a considerable amount of anxiety relating to having a needle even "look" at his arm. We had a full room with two nurses and a child life specialist patiently focused on helping us turn Evan around. It took a lot of coaxing, discussion, negotiation, bribery and distraction to get to a point where he willingly gave up his arm. At that point he sat there as still as can be while the nurse got the vein on the first try and filled about 8 different viles. After that ordeal we were all spent and hugged goodbye like we were long lost friends.

Next stop was pre-surgical and It was a pretty smooth visit. It was a long appointment to go over medical history and meet separately with a nurse and anesthesiologist.

We finished the trip with a visit with Dr. Golden Hands himself, AKA Dr. Weiner. It is always a pleasure to see him and he has a quiet way of whisking away any nervousness as he talks through the process and answers everyone's questions. Evan was completely engaged and had several questions about the surgery and recovery. It was fascinating to see him take an active roll in the discussion and Dr. Weiner commented that Evan is a young man now and shared how much he enjoyed talking with him. He met Evan when he was 3 years old and has been a central part of his journey.

Now we are on our way home with our bellies full of New York pizza and only a few more days before we return. I am at confident about our decision and know Evan will have a positive outcome. I feel nothing but optimism about our next steps.

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