Today was one of those days. Anyone who has read any part of our story knows that feeding has always been – and continues to be – the hardest challenge of our entire heart journey. And today, I had a particularly emotional and overwhelming day around feeding.
Kiran has been in feeding therapy at Childserve for a few months now. He is making some progress – slow and steady – but today, he didn’t have a good session. He coughed and gagged pretty badly, on a Cheerio, which is a food he normally does really well with. On the drive home, he started coughing and gagging really badly in the backseat … badly enough that it scared me and I pulled over to check on him. He was okay, but I was shaken…so I spent his lunchtime literally sitting in the backseat of the car (with the car on – it is stupid hot this week) in the Target parking lot tube-feeding him. I just needed to have my eyes on him for awhile, to be near him.
I just wish his eating skills were improving at a much quicker pace. I wish he could figure this whole thing out. I get so tired of the tube sometimes. It is a lot of work – the poor kid spends at least four hours every day just eating (1/2 hour of oral followed by 1/2 hour of tube meal, 4x a day). I hate how much time he spends in a high chair. I hate how messy syringe-feeding blended food can be. And today, it all just felt like so much. I was so overwhelmed, to the point where I was questioning where I was going to find my next hidden pocket of strength to continue with the day-in, day-out care Kiran requires.
I found it. Today was the day I needed to change out the g-tube. This is the first time I have had to do it when I have not had a nurse in the room talking me through it. I have never felt particularly successful or confident in putting the new button in, and the whole process freaks me out a little. When you pull the tube out, you are (of course) looking at a hole in your child’s stomach. It’s all a bit too…medical…for me. Needless to say, I was incredibly nervous about this afternoon. Arif came down and supported me and one of my best friends – who has been trained on g-tubes and put plenty in – came over as well.
And it went flawlessly. I did the entire thing by myself, and it just went incredibly smoothly. It took all of 20 seconds. I did it! Finally, I felt confident and comfortable with the entire process. It is what I needed today, to feel like “Hey, I’ve got this” I’m so relieved. Bring it on, life. (Just kidding, life. Lay off. We don’t need anything else; we are good here.)