Kaleb Prinz: Long-overdue Boston trip update

We've been back from Boston for almost 7 weeks now, and it's been a whirlwind of toddler action ever since! The trip went very well. Thankfully, I chose the first morning flight there, so we arrived well before a HUGE storm that pretty much shut the city down for 24 hours. Yes, that meant we left the house at 4 AM. No, Kaleb didn't appreciate it....but, in fairness, we all suffered equally. ;) All the worry about how Kaleb would handle the flight, and he fell asleep about 30 minutes in...slept all the way to the descent, when his ears hurt from the pressure. Poor baby. I wanted to cry with him, since there wasn't really anything else I could do. Step 1-Get Kaleb to Boston....check.

I loved the city. It was between 5 and 20 degrees the majority of the time we were there, and I'm not even sure that included the wind chill...but what a great city! We stayed at the Longwood Inn, which is about 2 blocks from Boston Children's Hospital. Thank goodness Karl INSISTED we stay there for the convenience, blah blah blah. We had more than 1 "conversation" about it, and I was completely unconvinced of the necessity of staying there, all the way until we actually got there. Not only did the huge storm hit, but you don't want to have to drive a car there....and I'm from Dallas. We do traffic and crazy drivers every day. I'm not exaggerating when I say people drive crazy FAST(on ice) and there's no place to park that doesn't feel like you're paying a deposit on something. I could go on, but Karl you heard it here first...I was not quite as right as you were on this one...;0 Enjoy the feeling.

Sunday was our only "play" day while we were there, and the city was covered in ice/snow. My plan for a tour of the city didn't turn out as well as I'd hoped, so we ended up at the Aquarium. It was fantastic! Kaleb is REALLY into animals right now, so he just walked/was carried everywhere looking around laughing, clapping, and talking to everything. I think we easily could have closed the place. Of course, the men ate tons of seafood that day, and my mom and I had the first of MANY grilled chicken sandwiches. Yummy...

Monday was our first day at the hospital, for Pre-op. Cardiac surgery has it's own Pre-op area....hello...and it was very smooth. I got to meet the people I had been speaking to by phone for weeks, and in less than an hour, we were out the door. We took it easy for the rest of the day. The next morning, we were at the hospital early for the procedures. Kaleb was fine until they took us back, and then he figured out enough of what was going on to be pretty pissed. I don't blame him. They gave him something that snockered him pretty quickly....sadly, didn't have enough left for Mama...and off he went. I was surprised by how long it took, since we'd never had a sedated MRI/echo. It was a little more than 3 hours from start to finish.

While we waited, a woman from the PR department found us in our "Kaleb" shirts, and asked us if we wanted to go to a special concert given by the Boston Pops, What?!! Yes, please. I couldn't think of a better way to spend one of the hours...20 feet from the Boston Pops, Christmas music, and a couple Patriot players dressed as Reindeer. Kaleb would have loved it!

When we finally got to go back and see Kaleb, he was doing great! Comfortable, still resting, all his numbers looked good, and Dr. Marx(Kaleb's Boston Cardiologist) even came by to speak with us. He wanted us to know Kaleb's heart looked great considering-we never tire of hearing that. He also wanted us to know that, although complicated, he was confident that Dr. Pedro Del Nido(Kaleb's Boston surgeon) would offer us the bi-ventricular repair. This was incredible news! It was what we were hoping to hear when we started researching options all those months ago. He said we would talk more the next day at Kaleb's Cardiology appointment, and after feeding Kaleb 2 popsicles, they let us go.

Boston's Cardiology Clinic waiting room is about the size of Children's Dallas' entire clinic, and it was pretty full when we got there. I was shocked we didn't have to wait long, and Dr. Marx was kind enough to spend a little more than an hour with us. He went over everything they found in the MRI, most of which we knew. What we didn't know were several key details about his global syndrome, Heterotaxy, and some pretty important consequences of having the Fontan surgery(the 3rd open heart surgery Kaleb has been waiting more than a year for.) We've always been told things like, "but he has Heterotaxy", and "things will be so much better after the Fontan." Of course, I've belonged to the Heterotaxy Network and other social media avenues for Heterotaxy and congenital heart defects for some time now, and have tried to be as knowledgeable as possible. Karl and I have always thoroughly researched options, and tried to do the best we could for Kaleb.
After the first few minutes of the visit, when Kaleb high-fived Dr. Marx and we exchanged pleasantries, it was like someone started sucking the air out of the room. He started using words like "heart block" and "pacemaker", and saying things like "it's not if, but when..." When discussing the Fontan, we heard him talk about the likelihood of liver and heart transplantation, complications like Protein-losing Enteropathy and plastic bronchitis, and the fact that Kaleb is even more at risk for these things because of the Heterotaxy.
The subject of a bi-ventricular repair was also discussed extensively. This means that the surgeon would repair almost everything wrong with Kaleb's heart....in one big surgery...and at the end, he would have a heart with 4 chambers and oxygen saturations of 100%, or pretty close to it. When he described everything that had to be accomplished in that surgery, I wanted to throw up. I had an overwhelming impulse to just grab Kaleb and run as fast and far as I could...however irrational it was. Dr. Marx felt confident that Dr. Del Nido would be able to do the surgery, but he was very careful to say we would have to wait to confirm it with him when he got back in several weeks. Dr. Del Nido was out of town for the entire month of December, so unfortunately we didn't get to meet him while we were there. We knew that ahead of time, but were more concerned about getting the tests done so that we would have options. Several WEEKS of waiting to even be able to consider these options. Dr. Marx stressed several other things while we were there, but one of the main things he told us was that Kaleb needed his next surgery....whatever it was....soon-in the next couple of months soon. (Punch in the gut)

I hardly remember the rest of the trip, but I know it involved more seafood/grilled chicken, playing in the connecting hotel rooms, exploring the city, and trying not to think of what was to come. The flight home was equally fantastic. Kaleb fell asleep even faster...what?!!...and though we were soon back home and nestled in the crazy, we knew life would never be the same.

One day, one hour, one minute at a time,

Jenifer