Working the tube and backpack.
Monday night was quite the night. First one of the ports on Maddox's feeding tube wouldn't stay shut and I was told we needed to replace his feeding tube. I almost threw up. I had such a hard time falling asleep. (I know it's not a major procedure, and Maddox is not dealing with any life threatening illnesses. And there are parents who need to perform far worse procedures on their children and watch their children suffer and go through hell). but I was traumatized putting the tube in him.
Maddox woke up to go to the bathroom, so I put him on the potty chair, but not far enough. We had a flood of pee and I was soaked. At 1:30 in the morning.
Then he woke up a couple hours later and the tape on his nose had come off and the tube was pretty far out of his nose. Oh my gosh, I was freaked out. Then I realized I was looking at the wrong mark on the tube, but the tube was still pretty far out. I had to push it in and Maddox was gagging and screaming and coughing. Then I had to tape it. Oh my. My taping skills suck when I am wide awake. Oh, the poor boy had to suffer my taping while I was half awake. Our home was filled with screams for about a half hour, but he settled quickly once I was done torturing him. And he looked awful.
The last of our monarchs to emerge. Look at those tiny wings. I'll try to break up this wordy post with an occasional picture.
Yesterday, was a wonderful day.
First, I found out we do NOT, I repeat, do NOT have to replace the feeding tube. I cannot even begin to express how relieved I was to hear that. I had a sense of normalcy. I think the feeling of "crisis" is going away and we are getting into a routine with the feeding tube. Maddox still needs coaxing though to get dressed. It's scary fir him pulling a shirt on and off over the tube. Mason and Maddox played outside for most of the day yesterday and Maddox was able to climb on the play set easily while wearing his backpack. We also had a picnic lunch in the yard and Maddox actually ate quite a bit.
I talked to our GI dr's nurse and she said if Maddox gains weight really well, they may start weaning him off the feeding tube earlier than planned. She also said, as long as the mark on the tube isn't next to his ear, I can just push it back in without having to pull it out. (the mark should be right near his nostril)
I can't remember if I said what the plan was. It's to keep him on the feeding tube for 24 hours (changing the food every 4 hours) for 2weeks, and then he will only be on it for 15 hours a day.
The home care nurse came over yesterday and retaped Maddox's nose and ordered more supplies for us. We didn't have the right syringes, so she took care of that. Which is wonderful, because I don't know the lingo yet. I asked her if there was any other way to tape Maddox's nose that wasn't so noticeable for my brother's wedding, but she said there wasn't.
The other wonderful part of yesterday was that Maddox did not cry or scream when I removed the tape from his nose. He also pushed in the tube himself and told me it doesn't hurt when he pushes it in. And I taught him how to start his feeding pump and pause it if an alarm goes off. He is all over that. He is definitely becoming more involved in his cares.
Eating with chopsticks. He eats more when he uses chopsticks.
Today was another good day. Craig was on feeding duty last night, so I had uninterrupted sleep. Ahhhh. Sleep is a beautiful thing.
We went to Hartley again today. A little boy asked what happened to Maddox. Our explanation wasn't good enough for the boy. Maddox just kept looking at me and tried to give an answer too. Our home care nurse told us we needed to prepare Maddox for questions, but we hadn't yet. Mason and Maddox were working on a fort at the time and this boy had a personality like Maddox, but was older, maybe 5. Maddox had no problem bossing him around and telling him how to build the fort. It was funny watching the two of them interact. As soon as Maddox began talking with the boy, the focus of the tube was gone.
Maddox took his first sit down bath tonight with the tube, I clothes pinned and clipped the tube to his hair. He did fine and wasn't too apprehensive about the bath.
He also did well when I needed to change some of his tape. No screaming. Hopefully this is a trend.
Maddox barely ate anything today, stating it was too scary. I suppose there will be days like that. Hopefully not many. I'm going to make pumpkin pie tomorrow. Hopefully he'll eat that.
I think there was more I wanted to say, but my mind is a blank. This is a pretty boring post, but I want to have this recorded somewhere so I can look back on it when Maddox is 6'3 and 300 pounds.
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