Home sweet home

Posted Jul 9, 2010 5:59pm

We are home now. They decided to discharge Kaden last night due to the fact that there is nothing they can do for him there, that we can't do at home. We finally figured out the cause of these major pain episodes. Kaden's esophagus is very inflamed and food, water, saliva and natural secretions are getting stuck at the esophageal sphincter. This blockage causes spasms that are very painful for Kaden, but seem to be getting much better. We consulted with surgery and they explained that the we have two options. Option #1 (which we have chosen for now) is to take it very slow with initiating anything by mouth. If in the next two weeks we don't see dramatic improvement with these episodes they will have to surgically dialate Kaden's esophagus (option #2). I personally don't think he will need the surgery and think we just need to give him more time. As for his feeds, Kaden will continue to struggle with his caloric intake and there simply isn't much we can do about that. His brain is not creating the hormone that it needs to in order for digestion to begin. However, we will keep working with him. It's so weird to hear doctors say that there is nothing else they can do for our son. Dr. Fox is fascinated by him and wants Kaden to be a member of his "specialty care team". He wants to learn more about our son and his very rare disorder so we have a great team of advocates in place for him. By joining this team, we will have all of the right people in place to prepare Kaden for his next surgery (cleft repair) in September. We are looking into some other options to increase his caloric intake so he is able to thrive. He's literally so skinny now and we need to come up with a plan quickly. He weighs the same now that he weighed 18 months ago. Thank you all for prayers and support. This sure is a crazy journey.