Life is like a tango: two steps forward, and one step back. Overall it’s good to know you’re moving forward, but sometimes you’ll just have those day in between when everything goes backwards. This has been one of those days.
Well… frankly, it’s not entirely true that it’s been full throttle backwards today; Johannes has actually continued to steadily improve physically. But it’s been a very sad day for him mentally, and his mood has fallen way past his bottom level. I don’t think I have ever seen him so depressed. The doctors reassure us that most children his age react this way a few days after surgery. That may be, but natural or not, I still very sorry for him. Beside the great physical discomforts, that he now takes greater notice of, as the drugs slowly leave his system, he has started to vomit quite a bit also.
But the saddest part for him was the bad news we received this morning from our cardiologist after an ultra sound examination of Johannes’ “new” implantation, a contegra. This is like his former homograft but coming from a bull’s neck vein instead of from a human aorta. It turns out that right at the joint of the contegra and the lung artery, where the stitches are, the blood pressure is too high for some reason. And the ultra sound can’t tell us clearly why. One possible cause is that the contegra is to tight in that end. But the only way to know for sure is to perform a heart catheterisation, where a catheter is inserted through a major vein in the groin, leading up to the heart. There they can monitor exactly.
Of course, this is s a good thing to do if you want real answers. The only problem is that they want to do this tomorrow, Thursday afternoon. This means putting Johannes back to sleep again. And he really, really, really does not want to do that. We just need to find a way to help him get through it again. But… it might not stop there. In an open conversation today I told my son that he might have to undergo yet another major operation, should this small surgery tomorrow show a negative result. Upon hearing that, his spirits didn’t exactly cheer up. But I felt I had to tell him, just to prepare him.
Having said all this, however, Angelica and I both feel that things will soon be okay, somehow. A lot of that confidence comes from our faith, but also from the many thoughts and prayers sent our way from our family, and from many of you. We thank you from the bottom of our hearts.
And while you’re at it, please say an extra prayer tomorrow afternoon.
Warmest regards, Louis