I came away from Kiran’s GI appointment with more knowledge about granulation tissue – and with confirmation that is what we are dealing with, and it has moved on to the scarring stage. No other answers really to be had – why now, how to best prevent – we are doing what we should be. The granulation tissue is just his body’s way of healing what it perceives as a wound (the “unnatural” hole where his g-tube is placed). I know better what to look for, how to act, and when to be seen again. It was a constructive, productive appointment.
Swallow study. I have such a complicated response to it today. I realized, coming out of this appointment today, how much I let Kiran’s dad’s emotional reaction at the last swallow study affect me.
Our local feeding therapist made it, and I have thanked her immensely, both in person and immediately after via email. It is not lost on me how amazing she is, and as stated before, I will never take her dedication for granted. It was helpful to have her eyes on the study. She knows Kiran so well.
Kiran did great. He gave us a really good picture of what is going on. And it confirms what we learned the last swallow study. He needs to be on nectar thick liquids. He is at risk for silent aspiration with anything thinner. He also has some mild risk with crunchy/mixed textures, mainly because he likes to hold and lose them in his mouth.
Nothing changes. We continue on the path we are on. We offer only thickened water, purées, and meltable crunchies at home. And we need to get back in the habit of using his chest strap in his wheelchair while feeding him. We shouldn’t have ever stopped, probably, but sometimes those extra steps (he has so many) seem extra tedious when you’re unsure they are making a difference. It does. The swallow study showed us the difference his positioning makes.
So. Okay. Here we are. Still.
I feel I have come to accept that his g-tube may be a permanent fixture. This isn’t to say I’m giving up or we are stopping therapy – he is making progress, and we go where he leads. It just means I’ve made my peace with it. I can’t keep riding the emotional rollercoaster and putting all this pressure on meal times with the end goal of getting the g-tube out.
It’s just not my end goal anymore. If it happens someday, I will celebrate BIG! In the meantime, my goal is to just help Kiran safely enjoy food. That’s it. Whatever it is. One bite or 100, purée or someday actual bites of steak – whatever it looks like. Sometimes it means blending Oreos and milk and giving it via tube, because that’s a safe way to experience cookies and milk with my son.
I am okay. I am glad to have answers. I am thankful he took bites and drinks and swallowed so we could see what was going on clearly. I am glad we can continue to keep him safe.
It’s a long road ahead, but we journey together.