Some bad news...AGAIN!

[CK]

Hi Kristen,

This must be so frustrating trying to figure everything out. I don't know if this helps, but my GI doctor said that when you see recognizable food in your BM's it is a sign of malabsorption. I used to recognize a lot of foods and thought that was my problem food but my doctor said that this wasn't necessarily the case. It was just a sign of damage to the villi causing malabsorption which in turn leads to foods coming out similar to going in. Now that my gut is healing, this isn't happening to me as much. If I do get a bad food, it seems to start the process over again. The only other analogy that was shared to me by my doctor was thinking of it like getting a burn, having it scab over, then all the food passing over it unable to be absorbed or digested, then passing through quickly, until it can heal up.

[Chelsea]

So sorry to hear that. I hope he is starting to recover.

We are in the same place right now. I tested oatmeal again on Thursday morning, by afternoon she was bloated. Even this morning, she woke up and laid on the floor on her belly for a bit. That is always a big sign she doesn't feel good.

Oatmeal for crying out loud!!! Sorry my anger and frustrations are rearing again. We met with he surgeons on Thursday and of course they commented on the bloating, I mentioned the oatmeal to them and they were amazed. It was then that they immediately agreed the benefits of a diagnosis out way the risks of surgery. I am still trying to wrap my head around that though.

[Tammy]

At this point I have to agree on the surgery statment to BOTH of you.
You have to get the DX and find out what is going on with these kids so you not only help the kids, but help yourselves, too. You'll find it MUCH easier to deal with when you know what you are dealing with. Then you can better guess what it causing what, and what to look for.

All surgery carries some risks, but with the knowledge out there today, surgery isn't something to be scared of. I'm glad Regina had it.

[Chelsea]

Well, our plot thickens. I hadn't had a chance to check her urine since I was working all day but after posting I figured I should and sure enough her ketones are +4 and if there were a higher number it would probably read even higher. Ugh. I guess it is wait and see for now.

Yes, Tammy, despite my hesitations, worries, anger and fear I know I must go through with this biopsy. It's strange though, I didn't hesitate to put my 3.5 son through surgery for his tongue when he was 18 months, but her I am just having a really hard time with. I don't know if it's because she is my girl or I just see her as this fragile little thing. It pains me that I even had to make this decision, it just isn't fair. But I have, and I will proceed. I guess, this little event has made me that much more sure about it. It just had better lead to some answers because don't know if I could do it a second time.

[laurie]

Wow KJ and Chelsea,

I wish I had some words of wisdom here, but KJ you know all I'm going through with Hunter. I'm still finding it very strange that foods he should be able to tolerate are causing problems, and yes once again he has shut down his food intake almost completely.

I have re-tested the eggs and he appears to be fine with them, so our last bad reaction which caused the elimation of all foods by mouth again, was due to his father having his hair bleached. For those of you that don't know, or haven't heard, there are sugar products in hair solutions.

An update on us right now..........We had to go to the doctor this past Thursday to have more scar tissue burnt off, and I had some questions for the doctor because we've had some other "little" problems going on. One of the problems is that bile seems to be backing up into his feeding tube. The doc is hoping it's some kind of viral infection and we'll be watching it til the middle of this coming week to see if it improves on its own. If there is no sigh of improvement we'll be going for yat another upper GI to see just what the problem is this time.
Needless to say I am crossing everything that it clears up on its own. The other problem is the tube itself. If it leans even slightly to the right it is causing Hunter a great deal of pain. The scar tissue seems to be growing at a rapid pace which is indicating that his body is really rejecting the tube this go-round. It could be due to the fact we've used the same tunnel too many times. I'm also hoping that this gets better, and gets better quickly. The thoughts of having to move the tube to another location is not something I want to have to do.

I'm sorry I haven't been on much lately, but KJ knows I'm going through a lot right now, which tends to make it a little difficult. I try to get in atleast once a week to keep updated on what's going on with everyone.

Chelsea, you and Gillianne will be in my prayers, I hope the biopsy finds you some answers!!

Laurie