This means that X has been able to tolerate all his feedings into his stomach. We haven't had to use the J tube (the one that goes into his small intestines) in months. He also had an ear infection and cold (last month) and didn't vomit his feeding, did not need pedialyte and tolerated the amoxicillin. This is miraculous!!! He has never done that while ill since getting this feeding tube almost 2 years ago.
He said his tummy feels better since getting the switch. I think having the J tube looped around his stomach and snaked through his intestines was very uncomfortable for him. Now we pray things continue to go well. I would hate for him to have to get the J tube again.
The other beautiful thing about this new button, is that it only has one port and it doesn't leak!! When we hook and unhook his feeding tube now, nothing comes out of his button. He is extremely happy about that, as am I. He seems more relaxed in general.
The day of his button change was amazing. This was the first time we had it changed out in our town. Usually we head down to the Cities. When X found out that morning what was going to happen he was a wreck. Poor guy. His last change out was extremely painful (in March) and he hadn't forgotten that. I will say that X was able to calm himself (which was a miracle) with help and when we got to the hospital, he was doing okay. Scared, but able to talk about it without screaming.
At the hospital, they hadn't gotten the order for the new button, or had lost it and they wanted us to come back another day. Poor X, there was no way he would have been able to wait, so I gave them 3 different numbers to try at the hospital in the Cities. Thankfully they were able to get a hold of someone.
I have to say I am so proud of X. He was terrified, but was able to do deep breathing with me ( that was a first) and asked for a washcloth to cover his face and laid on the table quietly. The staff at our hospital was amazing and they used a lidocaine gel to numb up the area. The procedure took less than 5 minutes and X only said "ow" when they took out the first button, but he was okay for the rest of it.
When they were done, he got off the table and said (enthusiastically), "that didn't hurt like the other doctor I go to!!!" He was so excited. The nurses kept fawning over him because he did so well, and he worked the room after everything was done. My sweetie.
He even said he wants to go there for the next change.(usually after a change, he says he wants Jesus to change it when he gets to heaven) And they said they could change it for us (I will have to check with insurance about that). I hope they can, otherwise we will have to change it. That is not an option for me. At. All. I could do it in an emergency situation, but not just because it was time. I would pass out.
So, I know it's been forever since I have blogged, but things are going well. We are doing 4-5 feedings a day that last 30 minutes each and are 2 hours apart. (he is not getting any tube feeding at night anymore) He is getting 1250 calories a day and supposed to be eating 100-150 calories. We will probably be upping the calories he gets on the feeding tube because he isn't eating the 100-150 calories. I'm not sure how we are going to fit another feeding in, but we will.
X is as energetic as ever. He is doing great and we have had a busy and fun summer (if you can call it that) so far. I'll have to blog about our camping. That
was quite the adventure!
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