From Gracelyn, Shea, and myself we want to thank everyone for the continued support and prayers. I know its often easy for people outside of family to show initial support and forget and move on. That clearly isn’t the case, and we are greatly appreciative of everyone being here for Gracelyn and us. Just to keep everyone up to date on whats going on, Gracelyn had been showing a small amount of gain each week and reached 5 pound 5 ounces at one point, but at her last appointment had showed that she actually lost weight which to our doctor in Dayton showed that we needed to speed things along a bit further. So we are leaving for Cincinnati today around noon and are expected to be there for 3 weeks give or take a week. Shea and I have started to notice some things ourselves that indicate she needs this next procedure, which Cincinnati is still unsure of which one they want to perform on her. Since she is getting too much blood flow to her lungs right now, they’re two options of surgery.
One is that she can have a band placed on her pulmonary artery, which they already tried to do and failed. What this does is tightens her pulmonary artery which takes the blood to the lungs therefore restricting the amount of blood to her lungs. There are of course good things and bad things about this operation. The good thing about this operation is that there is less risk during surgery and it is not a bypass surgery, which means that her heart would never be stopped. The bad thing about the bands is that it gives her less time to grow because as she grows the band does not grow with her and so the band becomes tighter. This means that she will need her 3rd surgery a lot sooner. Now the second option they have, don’t quote me on this, is called a “Norwood” type operation. What they do during this procedure is actually tie the two arteries together, that being the pulmonary and aorta.
After they tie them together they then put a tube from those arteries that connects to the lungs, sending blood to the lungs. There are of course risks and benefits of this operation as well. The risks are that this procedure is a lot more risky during surgery. This is a bypass surgery, which means that they would have …to stop her heart, and put her on a machine, then have to restart her heart after the procedure has finished. The benefit of this surgery is that if they choose to go forward with this option, this would give Gracelyn a longer period of time to grow before her next surgery. The Dr. said that this would allow her potentially up to 6 months or more to grow before the third surgery. So this surgery has high short term risks, and long term “benefits”. The Dr. said that the band procedure has a 1-3% chance of mortality or morbidity, while the “Norwood” type procedure has a 5-10% chance of mortality or morbidity.
Cincinnati is going to do whatever is in the best interest of Gracelyn and her case, as well as the statistics on what Cincinnati has shown they are more comfortable with and what works best for them. So that is where things are standing at right now. Other then that she is doing well, everything seems to have healed really well… from her first surgery and her aorta from the first surgery is staying nice and wide open as well as the hole they had to make between her upper chambers through her interventional procedure that was done immediately after her first surgery. Hopefully everyone understands all this, I tried to explain it as simple as I could, I’m going to try and stay on top of things and update everyone as much as I can. From all of us, we want to thank you all again for everything, and we love you. Gracelyn, Shea, Tim :-)
Please don’t forget to donate to the Hair Dye Challenge! If I can raise $500 I will be dyeing my hair and every single cent will go to Gracelyn, Shea, and Tim!
UPDATE JULY 24 2010
They have decided to do the more risky operation. I previously called it the “norwood” type operation. Well I now know the official name of the surgery and she will be having the Damus-Kaye-Stansel surgery. This is the one where they fuse the pulmonary artery and the aorta together, putting in a tube to allow blood to …the lungs. As of right now the surgery is scheduled for Tuesday (July 27). By the way the Drs. have been talking and the vibe they give off as they talk to us about this, scares Shea and I. They seem to be highly concerned about this surgery. We are just staying optimistic till the surgeon comes in and explains the surgery and all the risks. We have plenty of questions for him to answer. I’ll try to stay on top and give an update after we speak the surgeon.
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Gracelyn is in my prayers. My daughter was also born with HLHS.
Gracelyn is in my prayers. My daughter was also born with HLHS.
+1
I wish you all the best.
Have you gotten a second opinion? Nationwide Children’s Hospital in Columbus did the PA banding to our son when he was 9 days old. They spread his ribs for the procedure. They didn’t cut into the breastbone until his second surgery at 4 months old. There may be other options available to you.
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