Today was pre-admission day. We spent most of the day at the hospital. G had an ECHO, ECG, blood work, a chest X-ray, and a physical exam. We also had a chance to meet the surgeon.
G was very well behaved for his ECHO. He was not allowed to sit on my lap, but he kept his cool. We needed two short breaks, but overall a good experience. He also did very well during his ECG.
The blood work was a different story. His vein collapsed twice. We had to hold him down really tight and he screamed the entire time. At one point, his fingers started going blue, and his vein wasn't giving blood anyway, so I stopped the test and snuggled my baby. The third time was the charm, and we got it done. Afterward, dad and I had some much needed chocolate (dropped off by another awesome heart family ) and G had a cuddle and a snooze.
The chest X-ray was better. G was strapped to a board. He protested a wee bit, but it was all over pretty quickly.
Next we met with the surgeon. He introduced himself to the baby first and had a little cuddle. This guy is awesome! He then informed us about the surgery. He was really thorough. There are two big concerns with our case.
G is bigger and healthier than he should be. This may indicate that his body has grown more blood vessels to improve circulation to his lungs. These hypothetical vessels would make it difficult to put G on bypass during the surgery, and may lead to lung congestion afterwards. I am hopeful that he is so healthy because I was so diligent in feeding him often and that we don't need to worry about these vessels.
Issue number two: the coronary arteries could not be located on the ECHO. Since a nick in a CA would be fatal, the surgeon needs to know where they are. Once G is put under anesthesia tomorrow, he will have another ECHO. If that fails, he will have an MRI. The location of the CAs will determine the surgical approach. He doesn't know how much of the pulmonary valve he will be able to preserve. If he protects the whole thing, G has a better chance of never needing reoperation. If he slices through it, G is less likely to need reoperation in childhood than option 1, but very likely to need it adulthood. If the CA are in a really bad spot, G will have a conduit placed to increase blood flow to the lungs and will need several operations to replace it as he grows. We are hoping for anything but option 3.
We report at 7 am tomorrow for surgery. G will not be able to nurse after 4am but can have a sugar water solution until 6 am. The operation will last 4 to 6 hours.
For now, we will be cuddling and playing and enjoying this time together.
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