Happy Heart Day, Magoo

It was 2 years ago today that Matthew had his life saving 9 hour surgery by Dr. Frank Hanley. Thank God their are surgeons like Dr. Hanley out there. He's our hero, he gave our boy a second chance.

ECHO this coming Monday

We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart.
I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.

Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. By December 1st, it was rated a 4.7. It has been almost 5 months and I'm so afraid it'll be an 8 or 9.

My heart hurts when I think of it. We are trying to prepare ourselves for a surgery this year ... well, as much as you can prepare yourself for heart surgery on your child!

The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify, etc. It all depends on their little bodies. Each kid is different. To me at least, it doesn't seem to be a good sign that his leaked so soon.

Well ... we'll find out soon enough ... With any luck, it'll only be a 5 or 6!

I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...he has written a sweet post about our other e~buddy Dan of 0ddness in England. Dan lost his beautiful 4 year old daughter Bethany two years ago to problems related to her heart.
Dan has been MIA for a couple months now and we are trying to cheer him up.

I thank God for the support we get from other families of cardiac children. And of course from all of our friends and family. Support is what helps get us thru it all.

Early morning pre-op

Yesterday we arrived at the hospital for Matthew's endoscopy at 6:30am. We met with the doctors, got Matthew dressed in his undignified pink gown, and then checked his vitals before he went into the operating room.

Post-op

Matthew was in-and-out of the operating room in 30 minutes. Thankfully, there was very little pain involved with this procedure so he awoke quite peacfully by comparison.

Endoscopy update

All went well today... in fact it couldn't have gone better. Matthew was a champ as always.
Mike will be posting pictures tomorrow. We took quite a few.

Dr. Baron was able to take a few pictures of his esophagus, inside his tummy,
the beginning of his intestines and the fundoplication. He said all looked normal.. except, the bottom of his esophagus is inflamed a bit. He took four biopsies of different areas and we will get the results when we go to our appointment this Thursday. After we find the results, it sounds like we'll be putting Matthew on a drug called Baclofen... apparently it helps w/ spasms. I know another family in LV of a cardiac baby that used to retch ~ he was put on Baclafen and quit retching.
Our previous specialist wasn't interested in trying Baclofen.. I guess it's fairly new to the "world of retching kiddo's" ... this drug is typically used for kids that have spasms related to cerebal palsy. Don't worry.. Matthew does not have cerebal palsy.

We are anxious to try it and see what happens. Our friends swear by it.

So far, his retching remains a mystery!

Endoscopy today

We're getting ourselves together now to have Matthew at Sunrise Hospital by 6:30 am for his 8:00 am procedure. We are thinking we'll be home by noon.

Mike intended to put up some cute pics of Magoo yesterday, but life got in the way :-)

Please keep Matthew in your prayers today. He will be put under during the procedure, so it should be painless.
We never like being in a hospital during RSV season.. we are hoping to keep him healthy!
So far, been very healthy this winter... WOOT!

I sure hope this will be the LAST test for a while and we find out what is causing this retching ... and of course, we hope whatever they find will be a relatively easy fix.

Thank you! Mike & Terri

Oh.. the Mannings have posted the cutest pictures of Mason and the family over on their blog... link below.

Endoscopy scheduled

Funny, the billing department of the hospital called us today

to confirm all of our insurance information for Matthew's

Monday, February 19th Endoscopy.

We didn't even know that one was scheduled. :-/

I'll be calling Dr. Baron tomorrow to find out the results

of Matthew's gastric emptying test.
I am hoping to find out the time of his procedure Monday.

Matthew's Gastric Emptying Study

Matthew was a real trooper today. They gave him some mildly radioactive fluid and then took images of his digestive tract every ten minutes for an hour. We will get the results Thursday. Terri & I were relieved that the contrasting fluid went in through his g-tube and not down a tube in his nose. Based on the results of this test Matthew will likely need another test of his esophagus. As you can see by the look on his face, he was quite apprehensive about being in another medical office. At first he sounded his displeasure. Then, as it has done so many times, his mood turned to quiet acceptance of the way life can be.

Another test tomorrow

We'll be taking Matthew to a diagnostic center at 7:30 am for a "gastric emptying study" ~ we are still trying to find out what is causing his retching. The upper GI he had a couple weeks ago didn't show anything was wrong w/ his stomach ... and the fundo hadn't slipped. We were happy about that! They were unable to do an "esophagram" because he doesn't take anything by mouth. That was too bad, we were all very curious what that might have showed.

The test after this will be an "endoscopy" where they take a peek down his throat, they will put him "out" for that.

Matthew's portrait

This is for the newcomers to Matthew's blog.
A brief story of Matthew's life with some pretty sweet pictures of him.

Click on the link below.
http://tchin.org/portraits/matthew-9.htm