Friday, June 20, 2014

Friday, June 20, 2014

Well, we've continued dealing with episodes of vomiting since my last update. The Zantac seemed to work for a while and Collin had a bit of a break from throwing up, but over the last few weeks, the episodes started up again. Earlier this week Prevacid was added, and an upper GI study was ordered for this morning. Collin was a trooper for the test. He was nervous about drinking the barium and started to refuse it tearfully, but I told him we didn't want him to keep throwing up. So he took a breath, and started drinking it. He did such a good job. A series of X-rays were taken while he laid in a few different positions, and we watched as the liquid went down his esophagus into his stomach, and then right back up his esophagus. The report states that the flouroscopy showed "multiple episodes of high volume, high level reflux." The resident explained that the lower esophageal sphincter between the esophagus and stomach, which normally prevents food from moving out of the stomach and back up into the esophagus, isn't closing all the way, which allows stomach acid to flow back up into the esophagus. This is most likely collateral damage from the craniospinal radiation. If it was allowed to continue for a long time, it could eventually cause esophageal cancer. The Zantac and Prevacid will neutralize the acid to prevent damage to Collin's esophagus, but they won't correct the actual problem. To correct it, Collin will probably need a surgical procedure, called a nissen fundoplication. The surgeon would wrap the upper part of the stomach (called the gastric fundus) around the lower end of the esophagus and stitch it in place, reinforcing the closing function of the lower esophageal sphincter. It can be done laparascopically, but may require a short hospital stay, and has it's own side effects. We have a surgical consult on July 16, where we'll find out more information. While I'm relieved they could identify the cause and it can be fixed, I'm sad for Collin that he'll have to go through another surgical procedure, and that it's because of his cancer treatment. This is why children need better, less damaging cancer treatments, which will only be found through research.

Also since my last update, Collin has had routine check-ups with the local pediatric ophthalmologist and endocrinologist. The ophthalmologist was pleased with how Collin's eyes look. The vision in his right eye was better than I expected. I was doing my best with patching but I admit it wasn't being done as much as it should have been; even when it was, Collin would cheat by moving the patch and peeking out of the side of it. The ophthalmologist said we could stop patching because he wasn't sure it would cause much more improvement anyway. The endocrinologist didn't have any new concerns, and was pleased to see that Collin had grown an inch and a half since his visit six months earlier. We've also started the process of re-immunizing Collin, as most of the protection from his original immunizations was destroyed by his stem cell rescue. There has been a surge in some diseases like measles, which could be very dangerous to people with weaker immune systems. We apparently missed coming into contact with someone who had measles by about an hour one day last month, so it's important that Collin be protected as soon as possible.

I guess the only other thing to report is that we've finally made a decision about Collin starting school in the fall, or rather where he would go. We were deciding whether we'd send him to kindergarten, with the possibility of him having to repeat it the following year, or whether he should go to pre-school since he's never had a chance to do so. It was a hard decision. The staff and students at the local elementary school he'd go to have gotten to know him over the last year through fundraisers and school functions, and they have been wonderful to him. I know he'd be in good hands there. It's also the only year he and Neya would ever be in the same school, and the idea of her being able to walk him to his classroom and be there if he needed something was very comforting. However, Collin continues to be overwhelmed in larger groups of people, and he's not used to being around kids his own age since most of his first five years has been spent pretty sheltered, and mostly with adults. So, we've decided to send him to a kindergarten transition program through a local church, which has a great reputation. It will also be half day, mornings, five days a week like our elementary school, but the class has two teachers and is only half the size as the elementary school would be. We think it will be a little easier for Collin to adjust to, and the extra year will hopefully help him in the long run. We know that when he transitions to regular kindergarten the following year, the wonderful staff and students at our local elementary school will welcome him with open arms.

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