Alright, so they put a lot of contrast down the NG tube, and Fluro told me there is no obstruction (later confirmed by the diapers we had to change, I think my last count is 15?) but he does have reflux. Ok.

In the meantime, he is still getting ill. His belly is extended a bit and in some areas appears swollen and oddly shaped. Since I had not seen any docs since 8 a.m this morning (and I am used to them making two rounds a day), I had them paged. The doc (whom I had never had contact with came over) and checked him out. Well, according to him, his stomach is a bit irritated from the contrast hence the extension and swelling of his stomach. OK!

His belly hasn’t looked like this in a few weeks and I am a little concerned. Is really all of this because of the stent that is still in there?

Also, the nurse today (awesomely good job) printed his results from labs today and I made a discovery. His ammonia was 82 on Sunday and 61 today. Hmm got me thinking that if he now has a healthy liver and he is “cured” from the UCD that would mean that if his ammonia levels go over 31 then he would get sick?! Sorta makes sense to me, but again no one here to answer those questions until in the morning. Sure I can have them paged, but I will just have a doc who is on call and really doesn’t know anything anyway.

In the meantime, Lennon has about 2-3 diapers in an hour. They started him on a new medication to move things faster through his system, and this should help with nausea and the reflux. Well, we’ll see how that works out.

Though I noted that his burps have gotten a bit less since the medication was started. Now I just wish his diarrhea would get under control a bit cause this poor kid is already sore as heck.

He is soo ready to go home. He keeps telling me that and the nurses and the doctors. But he has to wait and gees patience is not his strong point, well what five-year old has patience?

Yesterday I had to place a student nurse in her place. Here is Lennon with a food aversion/feeding disorder, and she tells him that if we eat too much we get sick. Sure makes sense, but he doesn’t understand that now does he? He might hear that if he eats he will get sick, throwing out the work we had done to get him to eat.

Though this didn’t happen, man people really need to pay attention to the chart and talk to the parents and be aware of who they are dealing with and what issues are at hand. Then again I don’t think you really should tell any child that eating too much can make them sick, this will stick with them for a long time. I know it only happened once but still, Lennon is a child with food issues.

However, in retrospect, he is still munching away. Today he had a bag of pretzels, some yogurt, 2 cherry tomatoes, ranch dressing, some french fries and half of the small pringles size type. And again I almost got in a battle with the nutritionist. She told me not to offer him the junk food and he would start eating the food on the tray. WHAT?

,No he won’t eat if I keep away the chips and pretzels. I have to offer him everything and allow him to eat what he chooses. He has an NG tube and gets his nutrition through the NG tube when his belly can handle it. Speech pathology (love em) backed me on this, so yay for me and what I know about Lennon. Sometimes I wonder about people and their jobs.

I get that she is just making sure that Lennon gets the stuff he needs, but since we are dealing with a food issue here, nutrition is not always at the forefront. While I can and have to offer all the foods to him, he needs to make this choice. And as noted above he does make some decent choices eh? Yogurt and tomatoes, I’ll take that!

The other thing today is ..boy I wish people would read medical records! Nutrition said to try and get him to drink KidsEssentials 1.5cal..umm this is the stuff we feed him at home through his feeding tube. Lennon doesn’t like milk or milky kind of drinks! Right now they are giving him pediasure (when is belly can tolerate it).

Anyway, I had informed her (nicely) that he gets this stuff at home through his NG, but that he won’t take it orally. Heck we bought Ensure Chocolate flavor and he will drink half a medicine cupful but he doesn’t like it. The past two years he was on a special formula, he is not going to take anything willingly that tastes or reminds him of that.

On a lighter side, Lennon’s hair is sloooowly growing in. He is getting fuzz again and it is notably darker than it was before.

Well, I think this is all I have for the day. And here is to some answers tomorrow and perhaps a better day for Lennon.

Similar Posts

One Comment

  1. I think healthy ammonia levels go up to 55 … but either way 61 and 82 are high. Do they have any explanation for this? Can they fit these numbers into the stent equation? Would they be rising because of the infections you mentioned?

Leave a Reply

Your email address will not be published.