Adjustments, Routine and new infections?

So this past week Lennon has been spitting/vomiting, but transplant had to real understanding of why he might be doing this. However, there appear to be several options.

  1. He picked up a stomach bug? Could be but doesn’t seem reasonable because his spitting/vomiting is not consistent enough
  2. He is producing too much acid and the prevacid and sodium bicarp is not enough to for him
  3. He has too much air, which makes him gassy and could cause spitting up
  4. The NG tube as curled at the end and the feeds are going to the asaphagus.
  5. He has another infection, common to the transplant routine. It appears that there are some infections that occur after a period of time after the transplant

On Thursday, I took Lennon to the ER, because he was bleeding from his scrotum. Yes it was just a severe rash he was dealing with from all the diarrhea he had. However, Thursday we were informed to look out for bruising and such as he currently appears to be a risk for bleeding. But again no indication or thought of why he is spitting up/vomiting. This is frustrating, because one of the things is that if vomiting persists for more than 24 hours, call transplant. There have been constant phone calls to transplant about this issue. Anyway, the bleeding really was just from a terrible diaper rash, and we were send home with the instructions to put diaper rash cream on it. (Today it is much better!!!)

Our nurse that we have to help out is awesome, but unfortunately she cannot change the NG tube because she is not an RN. She could do it if it came out by accident or Lennon pulled it out. Well things can be arranged!!! But I don’t want to have to go that route.

For the labs (which he has done twice a week) they did a full viral culture thing, in addition to his regular labs. He is low in potassium, his K level is low, and Billi ruben is high and so is his white blood cell count, but no clear indication of why this could be as of right now.

Since he had been spitting/vomiting we had stopped the feeds because well it was somehow pointless to try and feed him if he doesn’t keep it in. He already has a food/eating issue and we didn’t want to contribute any more to this. He is hungry!!!! But only manages to eat 2-3 bites at a time. He is also thirsty! But here when he drinks (fast) he will spit up/vomit.

Yesterday I started via syringe to feed him 30 ml of KidsEssentials as much as he can master. We started this last night, 2 ml and then a break, 2 more mls and another break etc for 30 ml at a time. It worked, he kept it in!!! So this morning I did it again, and by the time I left for work, he had not spit up or vomitted. I realize we need to do this several times a day. He is supposed to get 135 ml 4 times a day (540 all together). At 30 ml we would have to do this 18 times a day. Well not reasonable but we will get as close as we can to even half of that say 9 times a day, he would get about 270 ml. At least until we can figure out why he is spitting up/vomiting and hopefully continue the feeds.

I am afraid that he is going to loose too much weight, that he is starving beyond belief and that he becomes even more malnurished than he already is. He appears weaker and with less strength, and walking is really a struggle for him. He is in constant hunger, but nothing is appealing enough for more than a few bites. He has sooooo many options and changes his mind from one second to another, and nothing long enough for him to be satisfied. He is trying more foods though and that well that is awesome. I just wish he could eat more rather than just a mere 3 bites.

This is what I have for today.

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