Welcome to Colorado
Written by Anna
Our last month in the NICU was filled with trying to manage Linus’s extreme nausea from his chemotherapy and, in an exciting turn of events, getting a new, more permanent, feeding tube. Up until this point, Linus had been fed through a tube that entered his body through his nose. This was becoming difficult to maintain because he frequently tore it out, it aggravated his sensitive airway, and he was vomiting so often that the tube often would migrate up out of his body. These issues were all remedied by having a GJ tube surgically placed. This tube inserts directly into his side and has one port that leads into his stomach and another that leads into his jejunum (part of the small intestine). Getting this tube was a game changer because it stays firmly in place, and we no longer have to worry about potential dehydration or weight loss from vomiting because we can feed him directly into his jejunum, totally bypassing the stomach.
This last month in Seattle was also marked by a noticeable decrease in the number of his little tumors that were appearing all throughout the month of May. It was extremely gratifying to see with our own eyes that Linus’s chemotherapy was working, and we prayed that his progress would continue on this same trajectory.
Once our family officially decided to move to Colorado for Zach’s schooling, our NICU doctors began to shift their focus towards getting us there. At first we tried to get a medical flight to take us directly to the NICU at Children’s Hospital Colorado, but that was denied by both insurance plans. Eventually, Linus was doing well enough that our doctors decided that he could be discharged and we could travel out to Colorado on our own. On July 12, Linus had his NICU graduation, and he, my mom, and I made our way to the airport to fly to our new home while Zach made the roadtrip with our car.
Flying with a baby can be nerve wracking as is. But flying with a baby fresh out of the ICU with a ton of medical equipment and medications to be administered during the flight is just downright stressful. Thankfully I had been in contact with the airline previous to our trip, and they had accommodations put into place to help everything go as smoothly as possible. Less than eight hours after Linus’s discharge, we found ourselves at the doorstep of our new home in Colorado. A weekend of unpacking quickly passed, and we had some of Linus’s first ever outpatient appointments. After just his first appointment of that week we knew that he would be receiving exceptional care at this new hospital!