We continued with the bolus feeds today. I kept the blouses at 130 ml an hour for an hour. At one point X said he had a tummy ache. It was an hour after one of the bolus feeds had ended. Was it related to the feed? Or just a fluke thing? I really don't know. The only time X ever complains of a tummy ache is when a feeding isn't going well, or when he is ill. He didn't throw up and the tummy ache didn't last long, so whatever the reason, it ended well. It can be so hard to know what to do or what is going on, especially since we don't know the reason X doesn't eat enough.
Thankfully we didn't have any leaks today and I didn't need to try and crawl into his "fortress" to take care of the leaks. That is always a plus. The formula we use reeks. Ugh. I can't stand the smell of it. Neither can X. I look forward to the day X does not need to use this formula. However, I am also grateful he has something to help him grow and be healthy and strong. I just wish it smelled a little better.
I feel like all we are doing all day is hooking X up to his feeding pump and unhooking him from the feeding pump. That is the inconvenient part of the blouses during the day. I think that in 6 months or so we will start decreasing the amount of blouses he receives during the day, in the hopes of triggering hunger.
Today X and N went to homeschool climbing at a local rock climbing facility. It's the first time X has gone. N is on those climbing team, so he's an old pro. When the staff was helping me fit X with a harness, I realized that the waist part of the harness sat right at X's button. sigh I asked if they had anything else and showed them where the button was. They had a full body harness and that worked perfectly. They were extremely helpful.As X is getting bigger and more adventurous, we really need to start thinking ahead about stuff.
This past weekend was another example of that. My nephews were spending the weekend with my parents, and my parents wanted to know if N could also spend the weekend. We were all for that, but I felt bad for X because he was the only one left out and it was because of the feeding tube. I haven't trained anyone on the night time feeds, because there isn't a whole lot of sleeping going on with the feeding pump at night. The formula is only good for 6 hours at a time ( because we have to mix it ourselves) and X needs to pee in the middle of the night because of all the fluid he gets, and for some reason, our feeding pump seems to alarm a lot. I think it's because he moves around in his sleep so much. His tubing gets kinked a lot.
But I digress. So, I felt bad. We decided I would spend one night at my parents' house with X so he could join in. It all worked out, but it breaks my heart that the feeding tube is starting to get in the way more. He's getting old enough where he is able to do things more independently, but not yet old enough to be fully responsible for his feeding tube. I'm sure we'll navigate this season, just like all the other families out there who have already done this. Our GI doctor did give us the okay to skip a feeding so X can spend the night at Nana and Pop's house without Mom. X was pretty pumped when he found out he could skip a feeding. We will just need to get more creative.
Last night X asked me if I would walk up the stairs with him because, "I am still a little scared from getting my button changed Momma. I still think about it and I feel scared. But I'm not scared of upstairs". Now I wonder if we did the right thing by not giving him the Versed. He wouldn't have remembered if he had the Versed. I don't know. He was fine today and didn't mention it, so maybe he's okay.
Today was a good day. Busy, but good. I am working tomorrow, so X will just get continuous feeds tonight, and we'll skip the bolus feeds tomorrow. I'm guessing tomorrow will be a good day too. I get to go to work for a day do something I absolutely love, and the boys get to hang out with a great babysitter whom they love.
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