Our first big news: Aidan completed the Grand Array at school on Wednesday. Anticipating this, we rushed over to see it in the afternoon, but he evidently dismantled it immediately upon completing it, so the teachers couldn’t even take a picture. Well, at least he’s tidy.
Our second big news: On Wednesday evening (late!), Colin came home for the first time since his surgery at NYU! It was quite late but he was greeted by Dad and Aidan taking lots of pictures and jumping up and down. He loves his new home and the elephant fountain, the playground out back and the wonderful play room inside.
Colin was especially happy to go to bed in a regular crib rather than a hospital crib, even though it had an awful lot of equipment around it. In addition to the basic maintenance of all of Colin’s bionic equipment, he is now oxygen dependent, so we have an enormous oxygen machine in the apartment as well as portable tanks for trips out of the house.
However, it is all worth it to get Colin home! And he was so lucky that they threw a big party for him. 😉
Thursday was the Target House 10th Anniversary celebration on the St. Jude campus. The theme was the “fiestival” with Shawn White there and a number of X-Gamers performing tricks for the kids. We have souvenirs of the spectacle, but Colin had to leave early because he started vomiting. This continued throughout the day and we restarted Zofran (there had been no reason to continue, we thought) and he received his infusion of G-CSF.
With an ANC of 1700, Colin may not need more G-CSF (they discontinue it after the ANC reaches 2000). So his immune system is better, but his tummy was out of sorts. This didn’t improve upon returning home and we had to go back to change his IV dressing, since we use a porous dressing to protect his skin and it can’t get wet (or stinky!).
After finally returning home again late at night, his G-tube popped out! So, back again to St. Jude on the shuttle to have a new G-tube inserted. Fortunately, this may explain his nausea/vomiting. It possibly explains his oxygen dependence. The nausea and stomach discomfort may cause him to take shallow breaths and therefore not get enough fresh oxygen in his system. Hopefully the resolution of this problem will also reduce his secretions. Time will tell on all of these points.
Otherwise, Colin continues to improve and communicate more and more. He seems very happy to be out of the hospital and absolutely loves taking the shuttle bus back and forth.
Thursday night’s “adventure” was made all the more tolerable by the shuttle driver, Jerry, who went out of his way. Not only did he escort us from inside the building on both ends, but he stayed late to make sure we could get home again.
With all of the executives and celebrities around and the pervasive sense that we are obligated to these strangers (not that we aren’t, but more on this in a more detailed update), it is often the support staff and volunteers who make a huge difference in our day-to-day experience here and make us feel truly grateful.