This post is a request for prayer. Two years ago this week, our little Katie-bug had just endured open-heart surgery. The surgeon had hoped to do a full repair of her very defective heart. It is on the wrong side of her body, turned around backwards, has a huge hole in one ventricle, and some other defects that I can't even remember.
When she went into surgery, the surgeon wasn't sure if he could do a full repair or a 'fontan.' The fontan is a procedure that leaves the heart with only one working ventricle. The heart is no longer a pump for the body. The blood actually flows through it by reaction to the squeezing muscle. So it is actually pulled through the heart rather than pumped through the heart.
Crazy, huh?
Well...after we came to Boston, the cardiologist here has been looking over her records. When SaraGrace was there in Feb. for her appendicitis, the cardiologist came to talk to me about Kate. He said that he and one of the surgeons had been going over her test results and felt that they would have made a different decision about repairing her heart. The surgeon is pioneering a surgery to fix hearts like Kate's. He wants to explore the possibility of doing a full repair of her heart.
This is good news but also very scary news.
Good because, of course, a full repair is AMAZING news for Katie! Scary for several reasons... One, any open heart surgery is risky and this surgery would be even more so. Our memories of Kate looking like this, are still fresh.
{Kate on April 15, 2009}
Two, because the recovery is very, very long. As in 3-5 months IN the hospital. Yes, months.
I have no idea how we would manage that, nor do I have any idea how it would get paid for.
On the other hand, how could we not allow Kate to have the surgery if she is a candidate? A patient with a fontan is quite likely to need a heart transplant by age 20-30, or, best case, be on a host of medications to keep the heart functioning.
It is not a surgery that can be put off. If she is a candidate, it would have to be done this year. The older she gets, the less likely she would be a candidate.
So....
Tuesday morning, Kate is going to have a heart catheterization and some other tests. Our prayer request is that God would show the doctors clearly what recommendation they should make to us. We are sooo hoping that we will not have to make a difficult decision about whether or not to try the surgery. We know that no doctor can give us any guarantees on outcome, but we are hoping that the direction will be obvious.
She will be in the hospital overnight. Fun spring break for her. Not.
{Although spending the time alone with Mommy IS a treat for her.}
