So I know its been entirely too long since I wrote for this blog...so I will catch up quickly and update what has been happening since January when Nicholas had the heart cath and MRI.
We were disappointed to find out that Nicholas' heart actually lost mass and his LV to PA gradient was weaker than before his last PA band surgery last July 2011. The doctors really can't explain what failed and will only have a possible explanation when they get him in surgery and look at the band. Anyway, our cardiologist knew we were really frustrated and suggested we "take a break" from heart stuff. We actually thought this might be a good idea. Well, we talked to Dr. Hanley a few weeks later in February and he thought that was not a great idea. He reminded us that as a child gets older, the heart gets less and less adaptable and that the sooner we try to get Nicholas' gradient up to where it needs to be, the sooner we will be able to do his Double Switch. He also said that even though he has done over a thousand PA bandings (for l-tga and other heart defects), there is bound to be one that fails, and it just happens to be the July PA banding on our Nicholas. All the luck.
So here we are, back at our little hotel outside of Palo Alto. It is 8:30 a.m. and we have to be at the hospital at 11:30 this morning. We have given Nicholas his last "clear fluids" as of 8:00 a.m. this morning. He really wants his morning chocolate moo, but that is forbidden. He asked me why he can have apple juice but not chocolate moo, and I tried to explain (without causing him fear or anxietey) that when he goes into surgery later today, his belly has to be empty so he doesn't get sick. One other trip to Stanford when he was the second case of the day was especially hard because he was so hungry and thirsty. I am hoping that since he is older this time it won't be quite so bad.
Yesterday at pre-op they explained everything to us and had us sign all the consent forms. It really started to sink in that we are doing this again. Some of the cardiac team members expressed their sympathies to us, as it is rather unusual for a child with l-tga to need 3 PA band surgeries. I guess when they have their morning meetings to discuss patients for the day, several of them were sorry to see that our sweet little Nicholas is having his third surgery for banding, and far from ready for his double switch. So it was "nice" to hear that they hold us and Nicholas in high regard and are sorry to see us here for another go at it.
When we met with the surgical team, we were reminded that yes, PA banding is a relatively easy surgery, but it has it's risks. Every time they open up Nicholas' sternum, it creates more scar tissue and it gets progressively harder each time to get to the heart. Also, he informed us that they will likely be able to see what failed with the band. There are several theories of what happened and depending on which one is found to be true, they will proceed in a particular direction. If the band broke, then they will carefully snip the stitches that hold it in place and replace it with an entirely new band. This can be dangerous because if the Pulmonary Artery is nicked, then massive bleeding can occur and create a serious situation. This is actually the lesser of two probabilities. The other possibility is that the PA band underwent "erosion" of the Pulmonary Artery and grew into the artery and is now located internal of the artery instead of external where it should be. If this is the case, they would have to put Nicholas on the heart-lung machine (by-pass) and surgically remove the old PA band. They would essentially cut his Pulmonary Artery before the band and after the band and then re-suture the Pulmonary Artery back together. They would then place a new band on his PA and tighten it to a point where his LV will work harder and get stronger without causing heart failure. We will not know what actually transpires in surgery until it is all said and done.
Today feels scarier than all the other times we have been here. Third time's a charm, right?
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