As most of you know, Matthew has a rare interstitial lung disease called NEHI (it affects his oxygen saturation levels and his growth) and he has endured countless tests and surgical procedures. He currently wears oxygen at night and has a g-tube to help with weight gain. The prognosis is good for NEHI, though there is still not enough known about the disease to be sure of anything. Anyway, back in 2007 it was hard to wrap our mind around the fact that our child had to wear oxygen at night but, it has been a fairly easy thing to adjust to. His lack of growth has been the most difficult. We were very opposed to getting the g-tube and avoided it as long as we could, but it just got to a point where things were not progressing. He would take a couple of steps forward with weight gain and lose it all during the next cold or illness...not to mention that he had delayed gastric emptying which made him vomit for a very long time. It was very frustrating trying to get him to eat and trying to invent new things to give him. Once, his stomach issue got better our wonderful doctor told us it was time for a tube, that enough was enough and that it was critical at his age that he grow and that she did not want to compromise his brain development...so we agreed.
Though we had some initial problems with the g-tube and the mere fact that it was the most painful surgical procedure he had had, it has been a godsend. Since its placement, everything seems to have just fallen into place, like finding the missing pieces of a puzzle. His growth has helped his oxygen saturation levels, his retractions, his mouth breathing, his stomach problems and overall development. We have seen many little light bulb moments for him and though he still has a ways to go, we are so very proud of him for being such a trooper through it all.
So we just got back from Cincinnati and Dr. Young was very happy to see his progress, very thrilled to see his growth and ecstatic to hear that we have been able to turn his oxygen down from time to time. We have been given the green light to try and slowly wean him at our comfort level...so we are very happy ab
out that
but are goin
g to be very cautious and slow. She said that some children that have NEHI still do not reach that deep REM sleep even though their saturation levels are good; so again, we need to be careful.The feeding team at Cincinnati Children's was also very pleased to see Matthew's growth. He is now at 33lbs. He is finally right where he needs to be. And he's shot up in heighth, even though he'll always be short because of us. So they gave us the green light to slowly wean him off his tube feedings...again slowly. May take another year or so...but, hey...great news.
So, we just want to say thank you to everyone who has shared in Matthew's journey. For those who have helped in spreading awareness about this disease. We appreciate all the prayers, and those people who took the time to ask about him and extend a hand. We hope that his progress will bring hope to those families that are beginning their journey with NEHI or for those still searching for answers. To all chILD families, regardless of your type, we cannot thank you enough for your advice and support...God Bless you all!!!!
