Matthew Update

So on the 10th we drove back to Cincinnati to see the feeding team and have Matthew's Mic-Key button replaced with an AMT. Everything went very well. He weighed in at 28.4 lb.s, so he is slowly growing on a curve now. We are to keep doing what we're doing for now and have a recheck in another 6 months or so.

So far the AMT seems to be working well. The only thing I have a hard time with is getting the feeding tube extension attached to the AMT...a little harder to get in for some reason. Oh well. We really can't complain, things have been going very well. Thanks to all of you for your continued support and prayers.

Eye Appointment and PEG Replacement

Ok, so I have to vent about our 17 hour day yesterday. We left the house at 4:00 am...the trip there was perfectly fine...Matthew slept the entire way...we got there at 7:15 or so (we made good time) and beat the morning traffic, which was our goal...because if anyone one knows...after you reach Dayton, traffic can get pretty hectic. Anyway, we go to Matthew's eye appointment (just a recheck, cuz last time they told us he wasn't favoring his left eye anymore and that his glasses were doing great). Anyway, they do these picture tests and the nurse tells us that Matthew is still favoring his left eye over his right...the nurse says we'll probably have to patch the good eye a couple of hours every day....(ok, not fun but not too bad). Well doc comes in a redoes the test and says NO, probably 4 to 6 hours a day...(oh just great)....just one more thing we have to get him to do for ALMOST THE WHOLE FRICKIN DAY!Ok, so that appointment is over and we are a bit bumbed out. We go to his next appointment, which they say should only last 5 minutes. 5 minutes to pull out the PEG and then replace it with the mic-key button. We give Matthew Tylenol an hour before for the minimal pain he should endure. So in comes the doc, she goes over it with us and we begin to hold our son down for her to quickly pull this thing out....she pulls, he screams! She pulls some more, and more and more and more and more and more...time is passing by very slowly and Rob and I are looking at each other like COME ON LADY, PULL IT OUT! He's screaming bloody murder and she says "It won't come out!" I said "WHAT DO YOU MEAN IT WON'T COME OUT, IS THAT NORMAL TO HAPPEN SOMETIMES?" "No" is her response. Ok, at this point I start to see stars and have to sit down. He's still screaming, Rob is getting pissed and I'm losing consciousness.Finally, she stops. She says, "looks like we're going to have to go in and get it?" "WHAT?" Yea, surgery! She says, "well you could come back another day..." Another day, Uh, NO! We drove three hours to have this done here and we are not leaving until it's done. She asks...did Matthew eat anything today? Dread came over me. He had had Pediasure at 7:30 in the morning. That meant surgery could not take place until 4:00 in the afternoon. Oh, I cried...and cried!To make a long story short...we waited until 3:15 pm for Matthew to be sedated and have another endoscopic procedure to get his PEG Tube out and replace with the mic-key button. My poor baby has endured so much and remains to be an amazing, resiliant kid. He played and smiled and waved to everyone as we waited those long hours. Neither one of us had anything to eat except a candy bar out of the room so as to not remind Matthew that he had not had anything to eat all day! Surgery took 10 minutes...! They told us it was half way out, but scar tissue had formed and it was lodged in the middle. They said it would have hurt him to pull it out the rest of the way...YOU THINK?Anyway, we left around 5 and got home about 9:00pm. A very long, heart-wrenching day for all of us.God forgive me for complaining, because in a hopsital you see so many horrific things that are far worse than your own, but when its your family and your in the moment, nothing seems as bad.I'm truly sorry if this scares anyone, it was not my intention to freak anyone out. All I can say is that if you're having your PEG-tube replaced, have it done early in the am and don't let your little one eat in case it won't come out and they have to go in and remove it. Otherwise, you have to wait 6 to 8 hours before they'll put them under.Thanks for reading...

The New Year

Ok, so a New Year has begun and though our kids have slight colds right now, things are so much better than they were at this time last year. We now know exactly what Matthew has, we are dealing with it well. He is no longer having issues with the delayed gastric emptying and has been weaned off almost all the meds. His sensory issues from the steroids and albuterol syrup are gone. His glasses corrected his wincing (which we thought was reflux), and his g-tube is helping tremendously with his weight. He is happy, energetic, and recuperates a lot faster with colds and common illnesses! He is in school now and is doing well with speech therapy! This year we are definately having a Birthday party for him; as we did not last year because of doctors appointments and just the muck of life.

Sara is so beautiful. Her curly hair definately takes over her whole self; however she is so refined and poised with it pulled back and cute as a button when she has it in piggy-tails. She is smart and so girly. She is taking gymnastics and ballet. She flitters around the house on her tippy toes and loves her princess dresses. She thrives in school and is very into crafts and being outside! She love her brother and has such a giving heart.

At home we are dealing with sibling rivalry, refusals to nap and occasional tantrums...and yet, we are truly blessed by it all. If you were to have asked a year ago, we would have said that we would take the behavioral problems over the not knowing of an illness. Oh the tears we have shed and the heartache of wondering if what we were doing was right.

We have walked on many stepping stones this past year and we find ourselves now in place of joyful chaos! Thanks to all of you for walking with us and sharing in our journey!

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.

Matthew Update

So, last Wednesday, the 15th of October, we drove back to Cincinnati for Matthew's re-check. Overall, it looks like Matthew is doing better; however, his weight was the main topic. Matthew gained like 7oz's in 4 months; very disappointing to say the least; and since his gastric emptying scan came back normal recently, the procedure we were going to have done is no longer an option. So today, we drove to Cincinnati again for the feeding team to evaluate his eating. They wanted to make sure he didn't have any trouble chewing, swallowing, gagging, aspirating, etc...and of course, he did awesome! Unfortunately, since he was sick last week, he also lost weight...again, very disappointing!!! It makes you feel COMPLETELY HELPLESS AND DEFEATED as a parent! He just can't keep up with all the calories he is burning from his breathing hard. I wish I could give him some of my own fat.

So, although we were reassured that we were doing very well with what he was eating at home, they asked us to try a few other things and if we didn't see any gain within 4 to 6 weeks, a g-tube would be necessary. We are going to pray and do our best, but we have finally come to terms with the fact that the g-tube may be the best thing for him.

Have I mentioned that Cincinnati Children's Hospital is fantastic. They never cease to impress me. It's a long drive but well worth it.