I feel like I am riding a never-ending roller coaster, and the thrill wore off long ago.
I started the day yesterday feeling confident and good about things in general. We decided to take the NG tube out and see how Kiran would feed (it was time to place a new one anyway, and we always like to give him the opportunity to show us he no longer needs it)…I was able to more closely follow our nap schedule which means I was able to get through some laundry and dishes…I even managed a shower!
He took a few bottles really well and then had a complete meltdown when I tried to give him his 1:00ish bottle. Of course, this was right before we had a meeting at the house with a design guy and in the middle of my husband’s busy work day. We both tried to calm him and were unsuccessful so quickly placed a new tube.
And thus began my downward spiral.
For whatever reason – maybe because it was done so quickly, maybe because I just decided to have a bout of anxiety in that moment, maybe just because something seemed a bit off – I wasn’t confident about the ng tube placement. I was sure it was in the stomach, but I had it in my head that it was too far down into the stomach. It was measured further down than the one we had just had in that morning, so it just didn’t seem right. This prompted me to contact my home health nurse to see if she could come check placement, which prompted her to share her concerns that Kiran still isn’t feeding well (not like him), which prompted me to continue my downward spiral into worry.
At this point, I just let go. I just held him on the couch and had a good cry.
And then I decided to trust my gut. I took the tube out. I even threw it away. (We have more, and we can place a new one if we need to; we haven’t needed to yet) Kiran had a very huge burp very shortly after I took it out, and I had read (yes I googled – yes I know I should quit – no I can’t and won’t) that an ng tube can circle around in the tummy and trap air. I’m going to go ahead and say I was right again, and I will continue to trust my nagging gut feelings on these things.
And this was all just one piece of the puzzle. The feeding piece. I still don’t have all the answers – He has been sick, and I agree he needed the support, but it does seem he should be able to feed orally now. He seems to be having some tummy troubles, and putting gas drops in each bottle seems to be helping. He has taken a good amount with 7 of his last 8 bottles, so maybe we won’t need the NG. One bottle at a time. I keep telling myself this.
Now for the bigger twists and turns.
I will be getting a call any day now to schedule Kiran’s cath in Iowa City. This will be to take more accurate pictures of the heart for surgery planning purposes. It is a necessary next step, and at some point, we have to take it. In many ways, I am ready to just know what the step beyond will be. I want to know if we can buy him some more time with a cath procedure, if we have to put the shunt in, or if we can feasibly do the full repair. These questions will finally be answered once we get through the catheterization. Still, it’s a lot to wrap my brain around.
And now today – a vision person came out to assess his visual skills. Kiran scored a 2 out of 22, so this mama was right again (though I wish I wasn’t): He is behind visually. Quite. She was noticing, in more clinical language, some of the things I have been noticing: His eyes tend to turn to the right; he does have a quick shake when his eyes are turning; he can focus or fixate on an object briefly but then his eye muscles seem to make him turn; he is not able to track, though it seems he is trying to. I haven’t let this really sink in yet. I simply took action – I sent out an email to the eye doctors in Iowa City referred to me (in a roundabout way, thanks to my former boss) by the former chairman of the Eye Dept in Iowa City. At least I know he will be seen by the best of the best. I have no idea what any of this might mean, but it seems it will be another medical issue to put on our already overflowing plate.
In all of this, there is one thing that stuck with me from another heart mom’s blog. It is essentially this: He’s still Kiran. No matter the diagnosis, no matter the issues at hand, no matter how many challenges crop up or get named…He is Kiran. He has always been Kiran. The vision issues have been there. He is still my baby boy. He always was and always will be. It doesn’t change who he is; it just gives us insight to help us move forward…to help him as best we can.
So. The roller coaster plunges ahead. Sometimes, I have to hold on for dear life to keep from being thrown from my seat. But I’m still on this ride.