Thursday, March 16, 2006


Max has caught a stomach virus...we think. But unfortunately he is giving mixed messages, so we are not sure at this time if he is not feeling well OR there is a "mechanical error," i.e. the Nissen coming undone. has not been a very good 12 hours to say the least.

It started last night...he was acting very fussy and it wasn't the usual tired cry, it was that of pain. While I was holding him and trying to comfort him, he vomited and then I noticed his abdomen felt hard and bloated. Venting him did not work, so finally I just decided to completely remove his Gtube to provide some relief. That opened up another can of worms because upon removal, I noticed fresh blood in that area. I'm glad I have developed a strong stomach because there were many, many "bodily fluids" going on.

The vomited continued throughout the night but the majority of it was mucous. Sorry for all the details everyone, but welcome to Max's world!!!

So I have talked to several of the "professionals" involved and we are now in the "wait and see" mode to see if this vomiting stops. We have stopped his feeds completely and now just giving Pedialyte to prevent dehydration.

It is never good for a child to vomit, but it is even scarier with a baby with a gtube and one with weak lungs. 1) When a baby is fed via a Gtube, they cannot tell you when they are feeling dehydrated and need more to drink. You as the caregiver must "guesstimate." 2) Every time he vomits, we must worry about aspiration.

We'll see. I am actually hoping it is a bug, because if it is a mechanical misfunction of the Gtube/Nissen, that will require surgery...and we DEFINITELY don't want that unless absolutely necessary.

I just feel sooooo bad for him when he is not feeling well. It just breaks my heart. Fortunately he has had a month of really no major "problems" and it is has been sooo wonderful to have stability. "Stability"...such a magical word in the special needs community!!!

Just yesterday we were at his doctors for the weekly checkup and we were both cheering each other on about how great it is that he has stayed out of the hospital. AND we were delighted with the recent weight gain...he is now 14 pounds, 5 ounces. He had really slowed down for a few weeks and that was worrisome. So we were all really happy to see him putting some weight back on.

And I also was talking with the nursing agency yesterday (always the fear of having nursing cut by insurance) and the coordinator said sweet Max is one of the very few little kiddos under their watch that has not had to go back in to the she said, whatever you are doing, keep doing. Thanks Jodi! :) (She is also an avid Mighty Max blog reader!)

I will keep you posted...but for now please keep him in your thoughts.

And also, I wanted to ask that everyone keep a special lil' girl in your prayers. Her name is Bella and she was recently born to a friend of a friend. She was born with some serious special needs and their family is struggling to understand the "who, what, why" and it tears my heart apart. Quite honestly, it brings me back to last summer when we were learning all that was "wrong" with Max and it was so incredibly scary. Please keep Miss Bella and her family in your thoughts and prayers...give them peace, comfort and strength as they face this challenge.

Thank you everyone! We have such an incredible prayer network via this blog and I deeply appreciate your help!!!


Meredith said...

Poor Maxi-Max! I've never wished for a stomach bug for anyone, but I'm doing so for you. We certainly don't want you to have more surgery. We are sending extra hugs and kisses for a speedy recovery.
Love, Meredith and the Davids

MarkCoyle said...

WOW Poor Mighty Max!!! I will keep him in my prayers Amy. You and he are both such incredible fighters. Keep it up!!!

Mark Coyle

Sara B said...

I can't believe I'm praying for a stomach virus...but sending prayers up for that! And rest and peace for you too Miss Amy.

Shana Cutting said...

Amy! My name is Shana and I came to your site by Ali Edwards (such a wonder woman) . I want you to contact this other amazing woman in Minnesota Sally Prouty! She has an Adult/grown son, Andrew (whom I meet) with CHARGE. Minnesota DeafBlind Assistance Project is an amazing forward thinking link and will provide lots of resources and guideance. Not to add another therapist or specialist to your long list, but rather a link and community member to your support circle. (My back ground is in Deaf Education and I am familar with variations of genetic disorders). Please call Sally---she is an amazing woman, and if you ever met Andrew your heart will melt and your fears will rest easy...he truly is an amazing, intellegent young man. I wish you luck, you and your son are in my thoughts and prayers.

Project Coordinator and Family Specialist Sally Prouty (612.638.1525, began her interest in the field in 1981 with the birth of her son, Andrew, who was born with CHARGE Syndrome. Having lived in five states, Sally has seen an array of services for her son. She is a confirmed advocate for children and their families. Prior to coming to the Project, Sally was the Director of the Childrens Discovery Project at DeafBlind Services, Minnesota. Sally holds a Certificate of Sign Language Interpreting from the College of St. Catherine and a B.S. in Family Resources and Consumer Sciences.

Ruthie said...

Hoping only the best news for you, Max and little Bella. Hang in there.
Take care-

Anara said...

I will pray for Bella and her family and hope she will do as well as Max has done.
I'm sorry to hear that Max isn't feeling well. (Under statement I know) it's been so long since he has had any real trouble that I was lulled into a almost forgetful state of Max's condition. I am praying that this is just a cold and Max will be his old (young) self again sooooon!!!
You hang in there and know that there are TONS of us that are praying for Max and you.
Love, Anara