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Manie’s Appointment Part 2

May 1, 2006

After traveling a long long long way with 5 children to take Manie to see a heart specialist we are finally back home. First I have to say my kids are pretty awesome. They were on there best behavior most of the time. Of coarse there was some bickering amongst them at times, but for the most part they were on their best behavior.

Alot of times when you have a child like Manie who needs special attention alot( which he deserves for all he has been through and must continue to go through) I think the siblings are pushed aside. I don’t think I tell my kids enough how much I appreciated all they do and that I know they sometimes have to take a back set to what is going on with Manie. SOooo thanks you guys for being such great kids and I love you guys so much.

Well about the appointment… Manie’s little heart is a mystery it seems. For the longest time now we have been taking Manie to the Dr.s for his leg cramps, arm cramps, and alot of other complaints Manie has been having. No one can seem to figure out why he would be having these complaints. Well being a mother and having 5 children total, 4 of which do NOT have any heart problems, I know Manie physical condition just has never been up to par.

After the past couple of years of being told there is no reason for Manie to feel like he does We may have found the answer. I say may have because in order to find out if the problem comes from what the Dr thinks it comes from, Manie will have to have another cardiac cath. The cardiac cath is a procedure where the doctor will put a camera through and artery which runs along the inside of Manie’s leg all the up to his heart where they can look at everything. Due to the dangers associated with this procedure the Dr. would like to wait as long as possible to do this but will be done with in the next year.

Many Echos or ultrasounds have been done on Manie’s heart to see if they could find anything wrong( besides the leaky valve which was caused by open heart surgery do to the TGA Paxil caused). Every time they try and try to see the pulmonary vessels but they can never view them. This is because when you have had your arteries switched, like Manie has, those vessels are just hidden. Well it seem that these very vessels just may be what is causing Manies problems. This was found out in Wisconsin due to the fact the dr. could hear some problems in that area when listening to Manie’s heart. Ahhh haaa makes sense huh.

If Manie had never had the collateral’s which required coils then the Dr. maybe able to do a MRI or CAT scan to see the vessels. The coils Manie has in his chest will cause interference with the machines which means a pretty messed up picture of a whole lot of nothing. So until we have a cardiac cath done we really just don’t know whats going on. All I can say is GSK did this they knew what they were doing and they knew what could happen long before Manie’s little heart was formed. Seems pretty “outrageous” if you ask me.

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