I'm sitting here watching Isaiah playing with some balloons that were given to him and remembering the first time he was some by the same people that gave him these. We had one our long stints in the hospital for shunt surgery. They came in with the balloons and we gave them to him and he started jerking on the string and in finding that it made the balloon go bouncing all over the place, he started cracking up! I mean, he didn't stop laughing the whole time they were there! Now, he's "matured" and will still play with them, but doesn't find them as humorous. It's such a blessing, though, to finally see him playing with them, since they've been here since Saturday night.
So, here's what's going on: we are going to finally take the drainage tubes out tomorrow, so that's two tubes off! Then, we found out that the MACE is beyond repair, so he's going to have surgery putting in a Chait tube, which is basically a tubes with a little door that we'll open and be able to flush him that way and then close it back up. Then, his mitrofanoff may be messed up as well, but we are to just keep an eye on that and hopefully THAT won't need more surgery, too.
Wednesday, we are tentatively scheduled for his shunt revision. The sucky thing is that instead of having it drain into his belly, which is where it's always drained, it is now going to drain into his heart! Now, they told me that it's ok and that it's not a high risk thing, but is it just me? Does it seem like messing with a five year olds heart is a little strange???? They make it seem like it's no big deal and all I can think is "WHAT?!?!?! AM I THE ONLY ONE THAT REALIZES YOU ARE MESSING WITH MY SONS HEART?!?!?!?!"
You know, what frustrates me even more is the fact that God just keeps reminding me that I only know in part. And it's not even that that's frustrating me, it's the fact that everyone seems so CALM about it all! I mean, am I the only one that prefers for everyone else to act frantically? They're just to calm to be talking about messing with my babies heart!
Anyway, that's where we're at and I guess I can just smile and nod for now.
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Veronica, thank you for posting. I will help us all know how to pray without you having to rehash the story over and over. Right now, I just see you and Isaiah spirit to spirit...smiling. I have a plaque in my home that says "prayer changes things" so I will pray that things change and that the upswing is permanent.
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