Wednesday, May 31, 2006


Pre-Op Today

Sophia had her pre-op today.
She is all clear to have her cath tomorrow.
I explained the specifics of the procedure in an earlier post. But basically, they are placing two stents in her right pulmonary artery. They are going to attempt to stretch the part of the artery narrowed by scarring from her last surgery to 10-12mm. It is currently around 2mm.
This shouldn't be a huge procedure compared to the one coming on the 15th. But, it has its share of possible complications. In this case, the benefits warrant taking the risk. They have made sure the CVS team is around just in case something happens requiring immediate surgery. But we do not anticipate this happening.
I will post with news as soon as I am able.
If all goes well Sophia might finally get some improvement to her oxygen saturation. Keep your fingers crossed.
Until tomorrow-Michael

Monday, May 29, 2006


These are the surgeons that save our little ones' lives...

Erika at snazzy kat posted on this story about a surgeon that donated his own blood to his 8-year old patient during a charity heart surgery in El Salvador. It shows how just beautifully compassionate people can be. Sometimes, I need to be reminded. It is worth your time to read it.
Below is a link to the charity organization behind the surgery. Perhaps you could help them fulfill their goals.

5th Annual CHD Awareness Quilt Project Show

CHD Awareness Quilt Project 5th Annual Quilt Show in St. John, Indiana on July 15th will have 37 completed quilts as well as completed quilt tops and all finished blocks that have not been assigned to a quilt yet.

Sorry, I haven't posted any new info on Sophia lately. She is doing well and I will definitely post before we go in for her cath/stent procedure at the end of the week. I just tend to focus more completely on family ahead of surgeries and neglect the blog a little. I will post this week and while we are in the hospital.

Tuesday, May 23, 2006



I wanted to take a moment to congratulate my sister and her husband on the birth of their first child.
A handsome baby boy with lots of red hair.
Congrats guys. I love you.

Sunday, May 21, 2006


Facts And Statistics

Thanks to Erin at
She has compiled some facts and statistics related to CHDs.
Check it out here.
She has also been compliling a list of financial resources to assist with medical bills. Check it out here. If you can help her identify resources, not yet on her list I am sure she would appreciate it.

Friday, May 12, 2006


Charity Project from Blogger in UK

Paul Youngson, a UK man, is trading an old piece of rope to support GUCH, a UK charity for adults with CHD. This is just like the one red paper clip project. Check it out. And make him an offer if you'd like.
He is at:

Tuesday, May 09, 2006


Messy OT

Here are some recent pictures from a particularly messy occupational therapy session.

Monday, May 01, 2006


Doctor's Visit and the Miracle Phlebotomy

We went to see the pediatrician today. Sophia had developed a rash around her G-tube and we were concerned it didn't seem to be getting better.
He said it was likely a skin infection and prescribed a couple of creams to apply to it.
We also had to go the lab to have some blood drawn in order to get an allergy test done. The lab is usually a very traumatic experience for Sophia, especially at the hospital. This was not at the hospital but in the same building as her pediatrician.
Patty went to the same lab in order to get blood testing during her pregnancy. I think she had three glucose tolerance tests, which require several periodic blood draws. She raved about how skilled the lab tech at this lab was at drawing blood. Sophia and Patty both are very difficult to "stick", be it for blood tests, IVs, etc. Patty always insisted this guy was the best.
So, we get there and it is the same guy. He immediately recognizes my wife and cannot believe how big Sophia is. He is a really nice person. He checks Sophia's left arm and unsatisfied he decides to check the right. He finds a good vein in the right and decides he will use it. He gets his stuff ready, has me hold her arm, and slips the needle in. He hits the vein first time and Sophia doesn't even flinch. He drew about 6mLs of blood and Sophia never cried.
Now, I have talked about how patient and tolerant Sophia is. But this was something else. Sophia has been through a lot and can put up with a lot. This was nothing short of miraculous. Not even a whimper.
So, we are going to contact the social worker at the children's hospital, and make sure we get all her pre-op labs done at this lab. No more techs that dig around in her like they are fishing termites out of a giant mound.
This guy is to become our personal phlebotomist.

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