Wednesday, October 04, 2006


Soooooooo....who knows what is going on with Mr. Max!?!

He sure keeps us all guessing. As I posted earlier, he was pretty miserable all morning. Finally after being off feeds for a very long time, he stopped vomiting and basically passed out. When I woke him up to take him to the doctor's, he was a much different baby. I even got a smile...and that was absolutely impossible this morning! So I was pretty encouraged.

AND when we weighed him, he actually had gained weight this past week. What??? How??? I was blown away actually. We have been behind on his feeds every day for the past two weeks because of the vomiting yet he still managed to pack on some pounds...or ounces that is! He now weighs NINETEEN pounds. Yay!

So that's the good news. The bad news is that no one really has an answer to our vomiting/failed Nissen dilemma.

I spent most of the day on the phone with the various specialities involved and there is no clear answer. Repeating the Nissen is not an easy procedure and can have more complications the second time around. We certainly don't like that word..."complications." There are various other options too, including giving him a GJ tube that feeds directly to his intenstines. However, keeping him on the pump 20 hours a day would be very, very, very difficult...I think impossible. He is getting quite mobile these days.

The other option is simply be patient and hope it stops eventually.

Who knows what the right answer is. I set up an appointment with his surgeon and we will discuss the various options. We might need to have an overnight stay soon (next week?) to do a 24 hour PH probe, which will show the amount of reflux over the course of a day.

Meanwhile we are just hoping to get through this current situation. Right now we have stopped all formula feeds and I am only giving tiny, tiny amounts of Pedialyte to keep him hydrated. If he does not tolerate that, we are going to admit him to the hospital so we can get an IV started. Hopefully it doesn't come to that.

This morning I was really worried because he appeared so lifeless and pale. But I am much more reassured after his turn around this afternoon. We even had speech therapy today and he participated a little. Ok, he wasn't in the best of moods but showing anger and frustration is speech too! Actually the therapist liked that he was telling me so clearly what he did and did not want. (He did the same in the doctor's office. I was holding him and talking with the doctor and Max was trying to pull his Gtube out. I tried several times to move his hand and tell him "no" and boy, he wasn NOT happy about that.)

Thanks for the emails of love and concern...very appreciated! Max is taking another little nap right now so I best use this time to do some laundry and clean his room. We made quite a mess this morning with all that vomiting.


Ruthie said...

Congrats on the weight gain, but love your heart on the whole vomiting situation. Hopefully soon you will find out something so that both of you can start feeling better. I wish I could fix it for you. My heart aches that you guys can't get a break from this. Hopefully Max will figure it out that you can only take sooo much.

Take care-

RebeccaA said...


I hope this won't prevent you from attending our gathering, but if so, of course I'd understand.

Maybe telling Max that he's going to see Cameron will help? :>)
Cameorn and Nathan's mom

elle said...

hmmmmmm put it to the charge group amy it might help more than me telling you stuff on here LOL thlugh im sure that does help but im only one charge is heaps xxxxxx love you

Leslie, Arlin, and Katie Kauffman said...

Amy, I read Max's blog regularly. I love all your stories about him! It's inspired me to recently begin a blog for Katie. Anyway, I haven't written you before, but thought I'd throw out a comment on the vomiting. Has anyone mentioned the possibility of cyclical vomiting to you? (Google it if you're not familiar.) It's more a neurological condition than GI. Katie has both absence seizures and CV. I know other kids with CHARGE who have CV, too. Have you gotten the results of Max's EEG yet? It may not be CV, but it was just a thought to throw out there to you. Hope Max is better soon!

Leslie Kauffman
Mom to Katie (age 4)