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.

July 23, 2015

Ten days and counting

I woke up this morning with the surreal realization that Evan will have surgery ten days from today. It has been scheduled for a couple months, and in my mind it has always been so far away. Today we went to NYC for pre-surgical visits and Evan will have 5 appointments in the next 2 days. 

The scheduling aspect of this surgery is pretty chaotic but we have a place to stay and are lucky enough to have family who will join us in NYC and stay with Aria at home so she can take a class she's interested in.

Going through this process a second time is a really different feeling. The logistics are easier but it was harder to get in the right head space. What I know about this experience is that it will challenge us in ways we never expect and as prepared as we think we are, there will be surprises. We will have experiences ranging from inspiring to unbearable and will not be able to plan how each day will go. Surgery days are the hardest and are filled with anticipation and lots of just waiting around.

Understandably, Evan is nervous and we do our best to ease his concerns with honest and optimistic answers. We have had a lot of challenging conversations lately!

Sometimes people say they don't know how we do it and I usually make a joke about being addicted to coffee. If I really think about it I can honestly say I don't know how we do it either. As a parent dealing with a child's chronic medical condition you cherish what goes well and no matter how hard things are on us, the hand Evan has been dealt is so much harder. He has a string spirit and always manages to rise above his own circumstances. Evan bounds through life with a confident smile and is always ready with a joke. His laugh is infectious and he has a way of drawing people in. We look to Evan for strength and guidance and if we are wise we follow his lead.

July 12, 2015

Seizures in the North Woods

Rob and the kids are in northern Minnesota at my parent's house and I will be there for a long weekend next week. 

This beautiful part of the country with idyllic lakes, mild temperatures, gorgeous vistas and the nicest people you'll ever meet is a terrifying place to be when Evan has a seizure because they are so far from a hospital. The nearest hospital is 30 miles away and the nearest hospital with a pediatric epileptologist is 60 miles away.

To make things interesting Evan has had three seizures in the last 24 hours, much more frequent than his norm. He has also had emergency medication for each seizure. We start to be concerned about possible respiratory failure when giving him so much emergency medication in such a short time span. I emailed his neurologist and she called Rob almost immediately. We have increased Evan's normal medications and if he has another seizure he will probably have to be transported by ambulance to the hospital.

It's hard not to be there with all this going on. I know Rob is perfectly capable of handling this but it's just not the way I like to do things.