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.

Sara's 4th Birthday

So Sara had her Princess Birthday Party. She looked very cute, along with all her little Princess friends. We handed out wands to the girls and the boys received home-made capes. The school allowed us to use the Pole Barn and boy did that work out nicely. I think we'll be using it again for other events as well. So, we had face-painting and Briana and Conner were nice enough to volunteer their time helping with that and we had a ball toss and crepe paper contest. Winners were Annika and Kaleigh. It was crazy, but a lot of fun. We appreciate all our friends and family and the time we were able to spend with them.

Matthew's Glasses

Well, Matthew got his glasses. Amazingly, he put them on and hasn't messed with them. He is adjusting really well and looks pretty handsome too. Expensive, YES...but worth it if he can see better. We are so proud of him.

Last day of Soccer...

Well, I would have to say that Sara enjoyed soccer. Highlights would have to be her kicking the dirt, picking the flowers and the grass, watching her teammates run after the ball and pointing things out in the sky! It was hilarious.

Actually, she did really well for being the smallest one on the team and she of course was not the only one oblivious at times to what was going on. She dribbled the ball well and had a great time. She even got to play with her friends Jacob and Parker.

I'm sure, we will do it all over again next year!

Nostalgia

As most of you know, my mother is from Colombia and most of her side of the family still reside there. I miss them all horribly and wish I could go back more often. Now with Matthew and his lung disorder, I'm not sure when we'll go back...we'd have to arrange for oxygen when we get there and he'd have to wear it 24/7 because of the high elevation. Not sure I'm ready for all that yet. I guess we'll just have to take it one step at a time.

Elsita (my Aunt) and Jenny (my cousin)...

Les extrano mucho!

Newest Member of the Family

This is the newest member of our extended Family.Ian F. Cardenas

Born July 10, 2008

Parents are Edwin and Morgan Cardenas

Matthew Update

Ok, so Matthew had an Opthamology appointment this morning to check his eyes because of prolonged steroid use. Good news is that there is no sign of glaucoma or cataract; which we really didn't expect; however, we did find out that he needs glasses (I guess I should be ok with that, but it's just one more thing to have to add to his already stressful life...

Secondly, we met Dr. Kahl (GI doc). He is wonderful by the way! Matthew hasn't gained any weight since the last time we were in Cincinnati (still at 23 lb.s for a 28 month old)...like way way way off the chart. Anyway, Matthew has DGE so his food does not pass quickly through his body, which gives him a full feeling. So, our main concern was that they were going to recommend the G tube and then we'd have problems because of too much stuff in his tummy unable to pass. Well our concern was valid. They are now doing a new procedure which involves opening the lower valve with a balloon and then injecting botox to relax the muscle; the balloon comes out but the opening remains relaxed enough to let food pass better through the system. It's done as an endoscopy procedure. In and out...supposedly no side effects. It lasts about 4 months, but their hope is that it gets these kids on the chart and pass the hump so that they don't need to rely on GJ tubes. No gaurantees obviously, but so far 9 out of the 10 kids have had good results. We are encouraged by this option.

A Day at the Park!

When Cousins Come Around

When our cousins come around,

there's a smile upon our face,

we laugh and play as long as we can,

making memories from place to place;

friendships we hope will last,

are things you can't replace,

so when our cousins come around,

our family we embrace.

Author Unknown

Soccer

Well, Sara started soccer Tuesday....how cute is that? Hopefully she'll follow instructions well. I think every parent hopes that when their kid starts a brand new sport.

Anyway, our lives a gettting a bit more busy now that the kids are getting older. I'm sure it going to get more expensive too.

More later...

chILD Conference

So we just got back from the 2008 chILD Conference. It was great to meet so many other parents who know exactly what we are going through with Matthew. There was only one other family from Indiana and they live close to Louisville. It's unfortunate that we have to come together under these circumstances; however, it was an education for all of us and a very emotional weekend.

We learned how the Foundation got started and where they'd like it to go. It's only been around for about 5 years so we hope to help in whatever we can to keep things moving along. There is so much more research that needs to be done to help our kiddos.

During a Family Round session we heard a brief snippit of everyone's personal journey with chILD...I'm pretty sure everyone cried. It was probably the most emotional part of the conference, although there were many other times, we felt and saw tears.

The top five rare lung disease doctors from around the country attended this conference and gave us all the opportunity to sit and discuss anything with them individually, in group discussion, and as a panel group. They answered questions and tried to clarify things that were confusing to us. These doctors are incredible, easily accessible, and very passionate about what they do. We are so fortunate that we found the Yahoo support site which led us to Dr. Lisa Young, as we might still be trying to figure out things out. She is the second one from the left.

We also inquired about taking Matthew to Colombia...it's been a concern because the elevation is a lot higher and the higher you go, the harder it is to breathe. Fortunately we spoke with the elevation expert, Dr. Deterding (far right). She is from Denver and as you know, elevation levels are a lot higher there. So anyway, she said that we should go...that Matthew will probably need oxygen 24/7 there, but that if we have the proper set-up and equipment, that we should not limit him from anything. We were very happy to get that news. We'll probably wait until he understands the whole oxygen thing a bit better though...because it will probably be difficult to get him to wear it all the time vs. only at night.

We met a lot of incredible people this weekend and we are truly blessed with new found friends. I only wish more parents could have come, although we know all too well that it's so difficult these days to travel with the economy the way it is.

So anyway, this was our weekend and we have to re-adjust to being home now so, more stepping stones later...God Bless!

Adjusting

Well the kids seem to be adjusting well to summer camp; Matthew did cry yesterday and today while getting out of the car but seemed to calm down pretty quickly. These last two days he's come out of class smiling...so I consider it a success! When your child has an illness it definately takes you to another level of paranoia, but it's so important to give your kids the same treatment as everyone else; if it's at all possible. Sara was supposed to go to the Zoo with her class and it was canceled because of the uncertainty of storms...(it of course did not rain) Oh well!

The nice thing about summer camp is that they will have these same teachers when they start school in the fall...BONUS! I love Three Rivers Montessori.

Letting Go...

Today mommy had to take a huge step in "Letting Go" of her baby boy. It was difficult. My daughter Sara has always been very independent and when she started school it was emotional, yes, but I knew she'd be ok. With Matthew, he's been through so much, and the thought of one more emotional hump for him to overcome was overwhelming for me.

Kids are resilient though, let me tell you. He's been going with me to and from school every day this past year to drop-off and pick-up Sara. So today, when it was time to drop them both off at school for summer camp, he put on his back-pack and followed his "sissy" out of the van, looked back at me with that little round face and said with a smile "BYE MIMMI". My heart skipped a beat.

I, of course, hung around to make sure he was really ok, that he wouldn't cry, throw up, or freak out...and to my amazement he never shed a tear! I finally left after an hour or so and I cried all the way home tears of joy! I called Rob, called my mom and then cried again. Matthew's teacher was kind enough to call me half way through to let me know how well he was doing (that was very nice of her). Anyway, I am so proud of him and Sara too because she is such a helper and very concerned always about how Matthew's doing.

So, I guess I was the wreck today and I'm sure this won't be the last time.

Just another stepping stone through life...lol