Wednesday, May 13, 2009

Diagnosis

I'm going to try my best to make this post about facts as much as possible and not go into a long rambling (which I know I can sometimes do).
This blog is officially one year old about now, and it's been an amazing year. This post really seems to come full circle from the beginning.
After a very long and exhausting day at the hospital, Jason and I were surprised to find out that the specialist was meeting with the chief of GI to discuss Jaxon's results immediately. They had a meeting with us last night already.
Jaxon has been officially diagnosed with Neuropathic Pseudo Obstruction.
This is why he vomits. This is why he screeches in pain. This may also be why he is delayed developmentally.
He has a 70% chance to remain the exact same way he is right now for the rest of his life, while most likely being intravenously fed. He has a 30% chance to get worse, resulting in a need for a colostomy bag and a transplant. And he has the miracle chance, by the grace of God to just get better.
Reasons for this disease for Jax:
- Neurological Brain stem disorder - we are waiting for the appointment to be scheduled
- Vagus Nerve - we will have an EKG the day of the MRI to look at this
- Immature Nerve Development due to low blood flow while inutero (mono condition and TTTS)

While these upcoming tests may give us an answer of why he has this disease, they won't give us a cure. We plan to meet the with the motility specialist next week to go over questions with him and our plan of action. He wanted to give a little bit of time to accept this diagnosis. He wants to start talking about the intravenous route, which would in theory give Jax some relief from the vomiting since his food wouldn't be processed through his intestines.
Jason and I have decided to wait 6 months before making that decision, and have another motility study performed at that time. In the mean time, we want to increase his Zofran and start an antibiotic (the specialist mentioned this) that would help clear out any bacteria in the intestines (which everyone naturally has), maybe proving to give some relief. We would like to try the non-invasive route first.
Every time I asked a question, I hated the answer. I asked if this disease was fatal, and he paused....I started to lose it. Apparently the mortality rate for this disease was 40% 20 years ago, but they have no statistics to date. The doctor said science has advanced with transplants, so it's much better. I told him he was supposed to say, "no".
We've been told it's time to start thinking of his comfort.
It seems that Jax somehow suddenly knows this diagnosis was just given. He had an awful night, which may have been from the anesthesia. We had to change out his bed 3 times, and had to give a bath in the wee-hours due to vomiting and diarrhea. He's pretty inconsolable today.
We are obviously heart broken and looking for any possible way to be positive. I will have to work on that.

78 comments:

Pink-CJ said...

I am so sorry. My family and I will be praying for you every day. I hope by the Grace of GOD he will eventually just get better. This has to be so heartbreaking. Poor Jax didn't have a good night. Again, please stay strong for you little boys because they need you. Much Love,
Pink

Sara said...

Oh Annie! I am so so sorry. I am standing strongly on that miracle. ((hugs)) to you and your boys.

~Sara (blueladybug)

ivory and jamie said...

I am so sorry :( I was really hoping that you would find some GOOD answers. You will continue to be in our prayers.

Heather said...

Annie,

I am so sorry. It seems so trite to say that, but I am. Even though I have never met you or the boys IRL, I sorta feel like we are close and I am just so upset by this news. I am so sad and angry. And this is just me. I can't imagine how you must be feeling. Haven't you all been through enough already?

Onto some supportive words for you. First, I am so relieved you seem to have these amazing doctors there. It sounds like a wise decision to wait a week and let this news sink in. Also, it could very well be that Jax is having a reaction to the anesthesia. I have always had bad reactions to it, the worst being when I had a surgery at 18 months old (as my mother tells it). She said that for 24 hours I was only somewhat consoled in her arms, but I vomited all over her every few hours.

And if there is one thing I have learned from you in this blog and on the nest, it is that miracles do happen. So like you mentioned in another post, hang onto hope. It was a miracle, a stroke of luck, whatever you want to call it that they just happened to catch the action on the monitor when the boys were born. Hope that your sweet boy will be one of the ones who just "gets better". Miracles do happen, and Jax is a fighter and has already proven this to be true.

You are in my thoughts and prayers. If there is ANYTHING, anything I can do from my end, please let me know. ((HUGS)) to the best mama I know!

HeatherD

Erin said...

Oh Annie, I am so SO sorry! Pour little guy! He has been through so much already it is just not fair! I am hoping for a miracle on your behalf! Miracles do happen against all odds, plus the medicine is advancing forwards and they may have a cure very soon! Your family will be in my thoughts! *Hugs!* --Erin (quickstepstar)

Shawna said...

I am so sorry to hear about his Jaxon's diagnosis. You are an inspiration to us all. Stay strong and I'm praying for that miracle! (DramaGirl from the bump)

Sarah said...

I am so so sorry to hear this. Thinking of you and your boys....

mrsrubly said...

o no. i will be praying for ya'll that the plan is enforced immediately and that he remains as comfortable as possible until ya'll get the course of action. poor baby. god bless you little guy.

Shannon said...

Oh Annie, I am so sorry for this news and wish I had some better words of wisdom. All I can do is promise to keep you and Jax in my prayers. (((hugs)))

Tara said...

I'm so sorry to hear about this. I was so hoping for good news for little Jax. He is so adorable and its heartbreaking to think of him being intravenously fed for the rest of his life. I pray he just beats the odds and gets better.
Njbride0603

Jennifer said...

Annie, we are all praying for a miracle for you and sweet little Jax.

flojat said...

Sweater, I follow your blog religiously, even though I don't comment often. I'm so sorry to hear this news about Jax's diagnosis. He's such an amazing little guy (and you are so strong) I will be hoping and wishing for the best for you both, as well as the rest of your family. You've all been through so much, I wish you could just catch a break.
(FloridaKat from GP)

Laura said...

Annie I am so so so sorry! I'm in tears for you now. I wish there was something I could do for you guys. Anything at all. Please, just tell me and I'm right on it. And remember my promise to you, I still have hope for you. There was hope in what the doctors said, they just can't say it in a way that makes you feel better. But I can see it, and I have the hope. All my love to you and the boys. Breathe in, breathe out.

Mary said...

I am so sorry to hear this. Jax has been such a fighter for so long. I will continue to keep you, him and the rest of your family in my prayers.

((hugs))

HesseTwins.org.com.biz said...

Annie
I am so very sorry. You and your family are in my thoughts and prayers.
Kristi (dragonflyinn)

Jen & Jeff said...

There really are no words are there? None that haven't already been said. I just hope and hope like hell for all of you that he can come to grips with this and lead a normal life or that of course.. he is a miracle and it goes away. We all love you and support you and your little men.

Shannon said...

Im so sorry to hear this:-( I will continue to pray for you and the boys...maybe God will perform a miracle!

Wendy said...

Oh...shit Annie. I am so sorry things didn't go well. I'm so sorry this just gets more and more crappy. This sucks :(

Kelly and Natalie said...

So sorry to hear this! I am praying for your little guy and for your family!

Megan said...

Oh Annie! I have been so out of the loop, but I think of you and the boys all the time. I am so sorry to hear about the diagnosis, but I will definitely be praying for God to help heal little Jax! If there is anything I can help do, order a meal in for you guys one night, hire a housekeeper for a day, make a trip down to Milwaukee to help you for a day, please let me know! Hugs!

Ro said...

I'm so, so sorry. Little Jax is truly a fighter. Please know that you have many people that read your blog and are pulling for him (and you!).

Amanda said...

Oh Annie! I can not even begin to imagine what you are going through. I honestly believe that God has a plan for your boys and thats why he got them here safely. I feel that if ever there was a child capable of pulling off a miracle, Jax is it!

Jessica said...

I'm so sorry, Annie. We will keep you all in our prayers. <3

monica said...

I am sorry, Anne. I wish there was something that could be done to fix this sweet little boy. HUGS!

Linda said...

Oh God Annie. I am SO very sorry for what you and Jax are going through. I will pray for a miracle for your sweet boy.

MeghanM said...

I've been following your blog since the beginning and hearing this news, I am devastated for you. I will keep you all in my prayers and just know that there is a ton of research being done about children on TPN (intravenous nutrition) to improve the long-term outcomes. As you well know, miracles happen.

Jessarella said...

Oh Annie! I am so sorry. What a horrible diagnosis to get after such a long battle already. Jax is strong, he is a fighter and a survivor. He is so lucky to have you as his Mom. I hope they can find a way for Jax to be comfortable through all of this. All my thoughts, love, and prayers to you and your sweet family right now.

Valerie said...

Oh Annie! I am heartbroken for you and in tears. I am so sorry for the diagnosis you got. ((HUGS))

Little Jax & Brady are miracles and your little guy is a fighter. So are you.

ShoeFanatic614 said...

I have followed your blog for a while but never commented. But I wanted you to know that I am praying so hard for your family right now. They are beautiful babies and so lucky to have such a strong mommy!

Danse said...

I'm so sorry, I don't even know what to say. My thoughts are with you and your family.

Heidi said...

Annie,
I have no words. I'm so sorry. Your family is in my prayers. Praying for a miracle for little Jax' body.

Heidi

Melissa said...

I wish I could hug you right now. I'll be praying hard for your boys.

Kelly, Louis, and Ruby said...

We'll be praying for a miracle for you and your sweet baby boy...

Jennifer said...

I'm so sorry to hear about Jaxon's diagnosis & I will keep him in my prayers. hugs.

Hong said...

Praying for a miracle for your family.

Kris said...

Annie-
I have no words other than I am truly sorry. I will be praying for a miracle for you, Jason, and little Jax. You have all been such fighters and so strong. Jax is so lucky to have you as parents.

Best wishes and love,
Kris (aka Krisc)

wee said...

i've been following your blog and am heartbroken to hear this news. i am so sorry. your family will remain in my prayers. :)

SaraBelle said...

Oh Annie -- I am so sorry! I continue to keep you all in my thoughts and prayers.

Sara (beefsbride)

Mrs.McJeep said...

I am so sorry. I will be praying for a miracle.

Becky said...

I am so very sorry. I am keeping little Jax and your family in my prayers!!!

C said...

Hi Annie,
I'm another nestie who has been following your blog since you were admitted on bedrest. I'm not even sure how to articulate how very sorry I am about this latest diagnosis. Your strength, and your husbands, amazes me daily. Please know that you all are in my prayers, but I will be saying some extra prayers for Jaxon today. You guys will get through this. I have complete and utter faith in you.

I applaud your efforts trying to go the non-evasive route first, and making sure that Jaxon's comfort is number one. Hopefully the MRI will bring more answers, and fingers crossed they're better ones.

You have two gorgeous boys there. You guys are super parents!! Many many hugs and good wishes for you!

Caroline
(nestie carolinag)

erinlaughs said...

Many, many thoughts and prayers to your family. I hope and pray that Jaxon is one of the few that just gets better.

marie said...

Annie and Jason,
I've been reading your blog for a long time, but never commented. I just wanted to let you know that I'm praying for you.
-Marie

Molly said...

I'm so sorry for this diagnosis. Just like you, I was hoping it would be something he would just "grow out of." Apparently not. I will pray that he is one of those miracles. I'm sorry you're going through this.

Scullyhoyy said...

Jax is a such a fighter, I believe he will continue to fight. Your doing a great job as a mom. Sending lot's of Prayers & ((hugs)) to you all.

Nichole said...

Annie, I am so so sorry! I will be praying for that miracle for Jaxon! Your boys are absolutely precious!!!

The Lane Family said...

I am so sorry to hear about this and we will continue to pray that the Lord will help heal him and give him strength as well as both of you.

Jamie & Nicol said...

Annie,
There are no words that can express how sorry I am that you all received this diagnosis. I too am praying for that miracle for Jax. As always, you all are in our thoughts and prayers. You support so many of us on a daily basis, I only hope we can provide that same support to you.
Much love,
Nicol (jpbride2004)

Lani said...

So, so sorry to hear this Annie. I will keep Jax and your family in my thoughts. I know that with a strong family like yours, Jax will have the best chance possible at a happy and healthy life, and I have faith that he WILL have that, despite this diagnosis.

D. said...

I am so sorry you're going through this. I don't know if it's any consolation, but after my younger duaghter contracted NEC, she had 40% of her small intestine removed. The doctors told us she'd most likely have to be fed intravenously for the rest of her life. Fast forward seven months and she's eating better than her sister does and her doctor finally admitted to me that in cases as severe as she had, the mortality rate is 60%. Moral of my story is that our kids are resilient and they can beat the odds. I'll be praying for your family to have the strength to get through this and for little Jax to prove everybody wrong. He's a miracle baby and I have no doubt he'll continue to be. Hugs!

nikki said...

I just wanted you to know i will continue praying for your family and especially for Jaxon. He is so blessed to have such a great mom. Miracles happen more often than statistics will ever show.
I know God will continue to bless your family.

Jenn Maron said...

I'm so sorry hon. I'll keep you in our prayers. *hugs*

Emily said...

I've been following your blog for a long time. I am so, so sorry that you, your husband and little Jaxon have to deal with this. My thoughts will be with you all.

Kimberly said...

Oh Annie, I am so so sorry to hear this news. I will keep your family in my prayers. Miracles happen--keep your hopes up!

Amber said...

(((hugs))) You and your family are in my prayers.
How upsetting to hear about the diagnosis. My heart hurts for Jaxon and you. The lucky thing is that he has you for a Mama!
I admire your strength and courage. Stay strong Mama. Show Jax how to be strong.
I believe that you guys can beat these odds!
-Amber (from thenest)

Alyssa said...

I am so sorry to hear this! I am a fellow nestie that has followed your blog from the beginning. My heart breaks reading this and you and your family will be in my prayers! You are so strong and you are an amazing mommy to both of them. Stay strong and give him tons of kisses!

rls07 said...

I'm so sorry that this was the diagnosis. I will have you, your husband and your adorable boys in my prayers. (((Hugs))))

leah said...

i'm so sorry to see this update.
my prayers are with jax and the rest of your family...

stephanie said...

I am so incredibly sorry about Jaxon's diagnosis. I have been following your blog since you began it and every day since I've rooted for you and your boys.

I will continue to send prayers your way. You all deserve this miracle.

::big hugs::

G & H said...

:( I am so sorry! We will be praying for you out here in California and for you little guy! I can only imagine how tough this must be but God is a God of miracles and we will defniitley be praying for one!

tukuatwins said...

I am so sorry Annie. I will continue to pray for a miracle for sweet Jax and for continued strength for you. Lots of hugs!

Maggie said...

I am so sorry. I will keep you in my thoughts...I'm not sure what else to say, because I know it won't make it better. I literally feel sick over this...I can't begin to imagine your pain. I am so, so sorry. Be strong, think things through and take your time. One day at a time.

ThreeRingCircus said...

Oh Annie.
Keep snuggling that adorable little man and let Brady love on him the way he does best. THAT is what's best for Jax right now regardless of how you decide to proceed.
We're prayin' for him in Texas, know that.

Alicea (mnbride1013) said...

I'm sorry sorry. I'll be praying for your little guy and for God to give you strength through this. Stay strong, hon.

Stella said...

I don't remember how I found your blog but I've been reading for some time.

I am so sorry about this diagnosis. Please know you are in my thoughts and prayers. Your boys are just beautiful and God works in incredible ways!!

Carissa said...

Hi its Carissa from the bump. I am so sorry you are going through this. I'll be thinking of you

Sunshine said...

I am so sorry to hear this diagnosis. I have been following your blog for a little while and can really relate with your journey. I am a nanny for a special needs child who has a gtube and has many of the gastro issues your little Jaxon has. I was really hoping for the reflux diagnosis to come through. But you seem like a strong and loving family and you will get through this and be better for it. Your boys know you love them and that is so much more than so many kids have. Just keep loving them and doing what you are doing. You are an inspiration to many.

Lisa said...

I'm so sorry to hear this :( But, those boys have been pretty miraculous so far, what's to stop them now?? I will say prayers for you. Hang in there.

Doubly Blessed said...

I don't know what to say- If anyone can't beat the odds its Jax!! I'll be praying for you!

LynnInLove1007 said...

Oh Annie. My thoughts and prayers are with your family and especially little Jaxon.
He is such a strong little boy I know he will beat the odds. Once he does you tell those doctors to update that 20 year study!

Sarah said...

Sweater, I'm so sorry! Your family is in my prayers. I know that there are miracles out there, and I'm sending you one.

Sniffer2.0

NewsPhotoGirl said...

I am so so sorry to hear this. I am praying so hard for a miracle. My thoughts are with you all.

Lisa (Denvergrl)

Roshelle said...

I'm so sorry bout this diagnosis. I'm praying that he beats the odds. I'll also be praying for you and Jason as I'm sure it is very hard for the two of you to deal with this.
Roshybride

Jenn said...

I don't know what else to say but I am so sorry. I was completely not expecting this. One thing I can say is what an amazing boy....from his pictures and fighting spirit you would not have known how sick he is. How lucky he is to have a brother showing him each day how to keep going. I think Brady really is key to how well he is doing (besides his amazing parents!) I agree with another post that said miracles can happen with you all....they already have!

Elizabeth said...

Dear Annie,

I used to nest on gp back when you found out you were pregnant and then with twins! i haven't really nested since then but i have gone back to see how people i "knew" were doing and I have been following your blog from before the boys were born ...

you, your husband, brady, and jax are such fighters and such a good, happy family. i will keep you all in my thoughts and prayers.

-Elizabeth (burbridgetobe)

sweetjenna said...

Annie,

I am so sorry to hear of this diagnosis. Please stay strong. I will definitely be praying for Jax to miraculously heal from this. God is amazing and answers prayers! I think you and Jason are amazing parents and Jax and Brady are very lucky to have you both. Please know that my family is thinking about you and praying for the best. Sometimes it is better to know the evil than not. HUGS to you all!
Jenna

Loree said...

I am so sorry Annie. I haven't been on the nest quite as much lately, but have tried to follow you and your boys. You have been through so much since day one. It just doesn't seem fair. I know that he will be one of the good stories and will be on the good side of all the statistics!

We're thinking of you and your family... Loree, Christian, Emma and Mady

signals3_t5 said...

Oh Annie! I am so so sorry. It seems so trite to say that, but I am. Even thought...