You know every time Kyle overcomes another hurdle I feel myself slowly let out a breath. It's been so long since I updated I should give you an overview, although like I said before..if your still reading this blog boy are you loyal. ;)
Kyle was born on October 27, 2004....my sweet little second child who came into this world to early and very weak. Kyle spent the first nine months of his life in the NICU literally fighting to breath. No one at that time could figure out why our little 33 weeker was so terribly sick. Kyle has never eaten by mouth and was entirely g/j tube feed. His lungs during the NICU were so bad it was at that time to dangerous to feed him by mouth for fear of further damaging his lungs. He was tested for all sorts of different genetic issues and passed them all. We finally were released to go home and we left the NICU with 2 Nissen surgeries, a g tube, oxygen, daily nebulizer treatments, loads of medication and really no answers. Kyle up to this point has had a very rough few years. He continues to be unable to tolerate feedings thru his stomach and after lots of testing we have discovered that his stomach does not work. He also has for the second time in his life a very aggressive hernia in his bowels that we hope is the cause behind his increasing feeding intolerance. At this times Kyle is completely TPN dependant and relies on a central line to keep him nourished. During our last hospital stay it was also discovered that Kyle has surgical material in his esophagus that somehow has made it's way from the outside of his esophagus to the inside. It has been there so long that it has created a false track inside and needs to be repaired. Both of these surgeries are major surgeries and will require both of Kyle's abdomen and his chest to be fully opened. The hard part is that his abdomen has already been opened 4 times...complicates things even more for him.
Thru it all....our sweet little middle guy is the smartest, kindest, most wonderful boy you could ask for.
We are at this point waiting for the final proposal from Childrens in Boston. We have submitted a muscle biopsy and are awaiting those results. It is believed that Kyle may have mitochondrial disease of the GI system.
I have clearly glossed over so much of the last 5 years, but I truly try to not look back...only forward. Kyle has fought for his life so many times that I know he'll fight this next battle just as strongly.
Fingers crossed we should have the final game plan tomorrow.