Damien has come a long way since his last update. The road however has not been an easy one. In June of 2013 a simple camping trip turned into a nightmare for his father and me. Damien was rushed to Hershey medical center lethargic and unresponsive. The emergency room staff were baffled. An hour later we found out his sugar was extremely low and that we needed to prepare for the worst. After several hours and dozens of doctors Damien was stable and we were able to take him home with strict orders to make sure he ate every 1-2 hours round the clock. Unfortunately the drug helping Damien to grow is also the same drug causing his sugar to be wacky it will drop some days and spike the next. Damien was placed back on his tube feeds to make sure he is never going more than 3 hours without food to help with the sugar problem. Around September of 2013 Damien got what we thought was the stomach virus. We took him to the emergency room for dehydration and ended up admitted for 6 days. What we thought was a virus turned out to be yet another complication. His stomach does not empty properly and his upper GI track does not move food properly if at all. Damien went from 23 pound to 21 pounds in 6 days. We left the hospital with a new feeding routine that end ed up failing. Finally the doctors decided to take Damien’s stomach out of the equation completely. A Gj- Tube was placed 1 week later. This new tube meant his feeds would go directly to his small intestine instead of his stomach. THIS WAS THE BEST THING TO HAPPEN TO DAMIEN SINCE THE ILLIOSTOMY!!! Damien is now getting all his nutrients at night over 12 hours so anything he eats during the day is bonus. He is 25 almost 26 pounds now YAY! To make everything even better Damien is growing. He went from size 18m clothes to 3T in less than a month. We finally got his sugar stable Damien was growing and all was well. Then we hit a brick wall. The level he needs to be on for his Growth Hormone to work is also causing possible optic nerve swelling. We’ve had to start all over again with both the sugar problems and his Growth Hormones as well as his eating. Throughout all of this Damien still reminds the laid back nothing is going to keep me down kid. He could be stuck in a hospital bed full of IVs and casted on both legs and you will still see him trying to jump around and run up and down the halls. He lights up every room he enters and reminds all of us just how determined he is to be normal. Our goal for this summer is to let Damien Be a kid. This is something he has yet to experience throughout the summer months.
Damien has had a long hard road since the last update. However we have found one more piece to the puzzle. Damien was diagnosed with Pituitary Dwarfism in October. After almost 2 years of trying to get insurance to approve an MRI of his pituitary brain we finally got it done. The doctor put Damien on daily growth hormone injections and he’s now tall enough to reach door handles YAY!!! This is a lifelong medication and Damien isn’t taking it to well. The doctor also warned us we may encounter more problems within the first year of the hormone therapy. Damien was also taken off the feeding tube in September in hopes of being able to get one step closer to reversing his Ileostomy. We are having a lot of setbacks with the tube feedings ending and may have to start them up again as he is back down to under 22lb. He also has started having problems with bleeding and we have now moved most of his doctors to CHOP in hopes of finding the best way to keep his bleeding in check. With all this not so great stuff happening we do have a lot to be thankful for. Damien’s feet are flat!!! He has been in casts since June and just had major foot surgery to straighten out and lengthen his tendons. His feet look great. He’s now in short leg cast and walking with the help of a walker. Nothing can keep him down. The second he heard he could walk in the cast he was up and walking out the door (at least trying to get out the door). We know he has a long road ahead of him and we are thankful for everything he has accomplished in his 3 ½ years of life so far. We have been told he would never walk and he was riding a bike last summer, the doctors told us he wasn’t going to make it past 1 year and he’s going strong. Our next goal is to get him well and safe enough to return to Woods road with the rest of his preschool class.
In March Damien had Ilieostomy and G-Tube placement surgery to try and correct his GI issues. What was meant to be a one week hospital stay ended up being 17 days long. Damein had a lot of complications from and the surgeon ended up having to go back in a week later to correct the problem so we could take him home. Once we got him home and everything healed Damien began to thrive. Damien IS GROWING!!!! since the surgery Damien is hardly sick has tons of energy and with the exception of a few falls from him being so active we’ve been able to stay away from the ER. His doctors are shocked at the amount of progress he’s made in such a little bit of time.
We also finally got an appointment in Ohio to get a specialized test done on him to figure out if we will ever be able to remove the G-Tube and Ilieostomy. The results shocked not only us but the doctors in Ohio. Damien’s colon is working perfectly. It was his upper GI track that was causing all the problems. His nerves don’t work the way yours and mine do. The good news is we can fix this with medication. The bad news is we most likely will never be able to remove the feeding tube or reverse the iliostomy. The doctors won’t even think of doing either unless he can sustain a healthy weight without the use of the tube feedings. We still have a long way to go in figuring out exactly what disorder Damien has. This was just one piece of the puzzle but Damien is strong and healthy and that is all that matters to Mike and I. Thank you again for everything the Shannon Daley Memorial Fund has done for my family.