Friday, March 27, 2009

Not a good appointment

Sooo I had a nice hopeful day that was pretty much completely shot down from the doctors at Jaxon's appointment today. Even though Jax had a good night (only up 4 times with two doses of Zofran and one dose of Mylanta) I kept a log of how much he heaved or vomited since getting up at 6:30am. By the time we were at the appointment, my tally marks said 12...which led to 13 by the time the doctor actually came into the room. I've also decided that the GI specialists should just move into our house since Jax NEVER heaves in front of them...ever...like totally never. He heaved in front of the nurse, the dietitian and then the dietitian's friend.

Well, our primary specialist is baffled. He truly believed Jaxon would be somewhat better by this age. After a long appointment of talking back and forth and some moments of just silence and looking at Jax, the doctor decided to bring in another specialist to talk to us about some other tests. But our primary specialist wants Jax to get an MRI to check for neurological disorders that may be causing the vomiting (can you hear my heart sinking?).

So the other GI specialist came in to talk with us. We've of course met this man many times over Jaxon's past hospital stays. He has suggested an intestinal motility test be done. This would tell us if Jaxon's intestinal nerve endings are working correctly or not. Vomiting without food in your stomach, but in your intestines is a symptom. There are some big words for all this, but from what we understand, they are now looking for a disease that he could possibly have. The doctor said the good news if he tested positive for this, is that we have an answer. The bad news is this would not be a good diagnosis. He could quite possibly never eat again. This specialist does not believe that Jaxon's current symptoms are reflux...he flat out said, "this isn't reflux".

(taking a deep breath to finish this post...)

I've scheduled his MRI, and of course the first open date was May 11...and the motility test takes 6 weeks as well. We may get lucky and get in sooner for the motility test since we live in town. Apparently this Children's Hospital is one of only 3 in the country that performs this test, so people fly in from everywhere for it. If some one's test can't be performed for whatever reason, we can be there same day to take their spot.

I hate the fact that we had to leave the hospital today with no way of helping Jax, and knowing we have to wait 6 wks to do two different tests, that either could have devastating results. I'm doing my best to stay positive and hope for the best until we know for sure. It's so hard when you watch him heave, retch and vomit...your heart tells you, "this isn't right".

Please God...just...please.

16 comments:

ThreeRingCircus said...

Jaxon has come so far, sweetie. He has his best friend there by his side and he knows y'all love him. We're lifting him up in prayer in Texas...

Please let me know if there is any type of support that y'all could use at a time like this. Food deliveries, hospital entertainment goodie bag type thing...ANYTHING.

Scullyhoyy said...

So sorry Jax is still having so much trouble. I will continue to keep him & your family in my prayers. ((hugs))

leah said...

I can tell how concerned you are... And it is my prayer that the doctors find the answer soon, and Jax will be on his way to good health.

Mrs.McJeep said...

Jax is in my thoughts and prayers.

Pam said...

oh, my sweet baby jax. :( maybe he needs to come down here and taste some yummy louisiana food. (is that a tasteless joke? you know i love your little guys a ton so i hope not.)

i just hope you get some answers, but NOT any bad ones. :(

tbonegrl said...

I am praying with everything in me for him, and for you, for all of you. I hope you get answers, but not a bad diagnosis.

Lani said...

Keepin' your little man in my prayers.

Ashlee said...

We are praying for you and your sweet little family. I hope the test get moved up and little Jax is healed.
From tumbleweed on the Multiples Board

Jenn said...

Hugs to you. I can only imagine how your heart must be breaking. the good part is though that beside the heaving he seems to be developing fairly well so if it were neurologic he is doing well! If it is intestinal, I feel for you. As I mentioned before my brother has Crohn's Disease..no cure and can eventually take is life or set him up for something else that does...his eating is a chore...enough about him though...I can relate. Hugs and prayers for you.

Jamie & Nicol said...

Annie,
You all are doing such a wonderful job managing all of this and staying on top of the doctors. I pray that you'll receive positive news soon.
Hang in there Annie. You're a fabulous mom.
Much love - Nicol (jpbride2004)

Heather said...

Oh Annie. I'm so sorry. I can't believe you have to wait so long. My heart is heavy for you. Please know you are in my thoughts and prayers. I'm angry for you. It's just not fair. After your tough pregnancy and everythig else so far, I just wish you all could catch a break. If there is something, anything, I can do for you besides prayers, please let me know. heatherlfd at gmail

(((hugs)))

Linda said...

It makes me so sad to hear that Jaxon is still having so much trouble and that the doctors can't seem to come to any good conclusions as to what is going on. For you as a mom it must be SO frustrating and you are so strong and take things as they come. Continued prayers and good thoughts to you and your precious Jaxon!

Jen & Jeff said...

omg.. Annie there just has to be an end in sight somewhere for you and your family. Chrons came to my mind like a pp mentioned. My BF has it and it's horrid thing. Have they checked him for every allergy out there? Let's see... what else.. have you thought about another opinion? Like maybe the Mayo Clinic or Johns Hopkins? I am just wracking my brain for anything.. sorry to think out loud.

Jessica said...

I don't think I've ever commented here before, but I have been following for a while. I just wanted to let you know that we'll be praying for you.

Brook said...

Annie I am so sorry Jaxon isn't feeling better. I'm sending lots of good vibes your way! Stay strong :)

Pink-CJ said...

Oh I feel for you... It's hard to see your child suffer and for no one to be able to help. I will be praying for you.