Round # 2 …anyone?

Might get graphic! Sorry.
So following my last post, Lennon spit up yesterday .. the kinda slimey spit up, which he had being doing a few times, but this time there was blood in it. We called transplant and said that we could bring him in as this has been going on long enough. So we went to the ER, and Lennon got some popsicles (his favorite thing when coming here, sometimes I wish he wouldn’t like it so much). They also took a bunch of blood (twice) because his numbers where all wack and they wanted to make sure that the whackyness is accurate.

They ended up giving him some vitamin K as he currently is a risk for bleeding. They also did an X-Ray and want an Ultrasound done (which we are currently waiting on). He cannot eat right now in case they want to do a biopsy?? or scope?? or whatever it is they thinking is wrong. Because no one can tell me what is wrong right now.

I can tell you that Lennon is starving!!! It is very painful to watch and see when your baby is so hungry that his belly hurts, you hear his belly grumpy, but he either can’t keep anything down or can’t eat. However, mind you that most of his vomiting is not from food intake (so it appears to me) it is from when he drinks to fast (again another observation).

Right now he is sleeping and that is probably the best thing for him as he may not focus so much on food. I ache for him and feel his stress and anxiety.

So for now we wait for the ultrasound, the docs to come in and talk to us about what’s going to happen etc and their thoughts about what the issue is.

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One thought on “Round # 2 …anyone?

  1. Oh dear Lennon, all that he must go through, and you as family must continue to cope with.Food adversions are so difficult to deal with. People just don’t get it when you have a child with a food adversion. We’ve heard all the advice on quick fixes and opinions and ideas and we have smiled nicely because we realize that unless a person has dealt with a food adversion they just don’t get it.Lennon is smart. He is trying to tell you something. He knows his body and he knows what it doesn’t want. Unfortunately that’s all he’s able to tell you and the rest of the puzzle is up to you and the doctors. What a frustrating and discouraging feeling when you want to help so badly but you have no idea how. When you see your child is suffering and in pain and have no idea how to help him.James had continual feeding issues and vomitting. We never got to the bottom of them, although we realize some of it was due to his lung problems. It was a constant mentally taxing battle to try and know what to feed him, when to feed him, how much to feed him, at what speed/rate to feed him …etc, etc. as you are well aware of. You know all this so I’m not sure why I’m telling you, except to maybe say that I feel so much for you and what you are going through.Does he vomit only when fed through the NG or when he drinks anything? (if he actually drinks anything orally). I am amazed with all his vomitting that the NG tube has not come out. Since they did x-rays and ultrasound I assume that means the placement of the NG is still good.To be honest I don’t really think this is an issues as Lennon has much more to deal with and is still recovering from surgery, etc. but I will just mention it for fear of guilt that it is the case and I didn’t mention it (I had that once before, not mentioning something I thought was obvious or too easy and it was the answer). As I mentioned we also struggled with James. His vomitting was definitely lung related but other things didn’t add up. He had constant diarrhea which we couldn’t get under control no matter what we did. Mucas and blood in stools, etc. All that fun stuff. Since James passed away 4 members of our household have been diagnosed with Fructose Malabsorption, all with different severities and symptoms. We often wonder if this was James’ problem because formulas are loaded with fructose and he survived off formula since he would not eat. But we never thought to further explore (actually we did but didn’t get much help from doctors and didn’t know what to explore) the possibility that there might be some other problems causing his digestive issues as it just seemed unlikely that he’d have more going on then he already did.That being said, since Lennon has never taken in these formula before could there be a possibility that he has some sort of allergies/intolerances making he reject the formulas (that is if the formulas are the only things he’s vomitting … if you feed water or something else through the NG does he vomit that?). Could some of this blood then be extreme irritation because of him being feed something is body is intolerant to? I realize he just had major surgery and there is a good chance this is all related to that. But I just want to throw that idea out. I’m not sure if this would even fit with where his wacky blood numbers come from, but if he’s not eating then his #’s are going to be out and not looking well. The problem with NG tubes is that we can control what we put into someones body and unless they tell us or show a severe way (like vomitting and diarrhea) of rejecting it we really have no idea if this is truly good for the body. There are so many intolerances out there that it’s hard to say … I’m just thinking of a formula level since that is what he is mostly receiving … there are the normal milk and soy (which the formula you mention has in it) and then there are so many uncommon ones that you have no idea until a doctor or someone helps you. As I mentioned we have Fructose Malabsorption (FM) in our house, I had never heard of it before, but statistics say that probably 1/3 of the population has it, most of us very mild to the point we don’t notice, but some very severe. The Kids Essential altho not the worse formula for FM as it has maltodextrin added, it does has sugar as ingredient #2 and fructose as ingredient #4 making it unsuitable for someone with a more severe or even above mild form of FM. An intolerance could even have been there before, but since he didn’t take in these foods before he might never have had enough to trigger off the intolerance and now with a greater load it could be taxing his body.As I mentioned, this may be way off track and I guess it is just dreaming of an easier answer then the many other possiblities. I pray that you do find an “easy” answer instead of a more complicated concern or something related to the transplant. I will also be praying for wisdom for hte doctors so that they are able to do the right tests to find an answer quickly and help Lennon get back on his feet again.*HUGS* for you and Lennon

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