2009 Matthew Update...Progress (YEA!)

As we approach the end of 2009 I can honestly say without a doubt, that this was a great year. A great year because since Matthew's been born, we've been dealing and worrying about one thing or another trying to get him on the right track (not really knowing what that was) and I think we've finally reached a place of tranquility, something I've been praying for for a long time.

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 about that but are going 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!!!!

Matthew's G-Tube

So, Rob and I had been dreading the day that Matthew would have to get the G-Tube...but, after many months, things still were not progressing. The date was set for Wednesday, November 19th; I have to add though that the week before, Sara got the Croup, Matthew fell down at school and hit his cheek on a table (huge bruise) and later scratched himself under his eye with a toy car. He looked pretty bad (better now though)! It was also scheduled for me to take Matthew to the Pediatrician's on Tuesday, the day before his surgery for a pre-operation evaluation, but I ended up taking both kids to the doctor on Monday because Sara was still coughing. That's when I found out she had Croup. The very same evening (Monday), I developed a fever, chills, sore throat, and just felt horrible, my dad had to come over and help me with the kids on Tuesday because I just couldn't function. My fever broke around 9:00am (thank goodness) but I still felt crappy. Sara went to my mom's that night and we prepared ourselves for the drive and trip to Cincinnati.

Once we arrived, things moved pretty quickly. Matthew had a Bronchoscopy/lavage and then Endoscopy with PEG placement (g-tube); they also took biopsy samples. Initial results are that in looking in to his bronchioles, all looks well, but we need to wait for results from the lab. Doc noticed that at the back of Matthew's tongue he has developed adenoid tissue; which could cause snoring and obstructive sleep apnea. I was like NOT AGAIN!!!!!!! Fortunately, Matthew does not snore, but we have to keep an eye on it. If he has to go through another surgery, I don't know what I'll do!!!!!!!!! Anyway, g-tube was placed and the surgery went well. Now on to recovery...uuuggghh!

So now, I'm losing my voice, Matthew has a tube sticking out of his stomach and I'm petrified to hurt him. Morphine was administered for pain that first day and then Tylenol w/Codeine after. He did really well. He really is a brave, tough little boy! He was so uncomfortable though. He just wanted to sit the entire time. The nurses said they were surprised by that because usually that puts a lot of pressure on the area. Anyway, they said we could leave Thursday night, but he just didn't seem like he was ready, so we stayed. He got his IV taken out late Thursday, which helped his mood tremendously. The lady from Apria came and gave us a lesson on g-tube feeding and a supply for 5 days. We left the hospital around noon today!

It is so hard to see your child with a tube sticking out of their belly. It breaks your heart to hear "Mimmy, it hurts". It is so hard to see your little boy is out of it because of the drugs and it is so hard to just know that he's already been through the ringer.

We are optimistic that the tube will help and we are happy that he did so well. It's just going to take some time to get used to. In about 3 months, we'll go back and they'll put in a mickey button, which will replace the tube looking thing in his stomach and be more flush to his skin. In the meantime, I have to figure out how to keep this tube and valve from being in the way of everyday life. Also, Matthew has a slight fever now...so I have to wonder if he's getting what I have or if he's getting infection from the tube placement.

Anyway, this is his update, sorry if I sound defeated right now, I'm just tired, and worried and sick of being sick.

Thanks to all of you who continuously pray for our son and for taking the time out of your lives to ask about ours. We appreciate your kind words.

Babette and Family
www.myspace.com/gierkebl
http://www.childfoundation.us/

P.S. Somehow this last week I lost all emails and contact information from my outlook. I am relying on the emails I am currently receiving to send stuff out; so if you get this, please send me your contact info, I would really appreciate it.