Day 27 at Avera

Sam started to make gains last weekend, and we were so excited that he was beginning to feel better and tolerate his feedings. However, on Thursday the sinus problems started in again with a vengeance! He is now back on pain medications consistently and very uncomfortable. Sam has a very noticeable pattern with the sinus problems which allows us to know what the problem is, but not how to fix it! He has had three sinus surgeries to clean the junk out which provides him with short-term relief but not a means to preventing the problem. We are now riding out the weekend in hopes that early next week we can put together a care conference with Sam's ENT, allergist and pediatrician. Due to the fact that the sinus cultures do not grow out bacteria, we are leaning toward allergies or an immune deficiency of some kind as the source of the problem. We will try this route before we look at transferring Sam to Omaha or Minneapolis to a pediatric ENT specialist for a second opinion. We are thankful for that fact that Sam has made it for almost a month without an ear infection and that he seems to be recovering well from the g-tube surgery. Oral feeding is definitely of no interest to Sammy right now! This is so tough on us, because we have worked so hard on feeding and eating was something that Sam enjoyed doing. We do know that he is receiving the nutrition that he needs through the tube feedings, but we continue to hope for the day that he regains an interest in eating by mouth.