Friday, April 15, 2005

Day 6 - Confirmation

Although our meeting was at 8, we were finally able to have it at 11. The delay was unavoidable because of other surgeries the surgeon got called into. We all sat down in the conference room; the neonatologist, the surgeon, a social worker (better one then the one we'd had since this one was more interested in helping than hugging), Matt and I.

The meeting started with the results of the biopsy from yesterday. It was confirmed that it is HD. There were no nerve cells. The next thing to find out is the extent. How much intestine lacks the essential nerve cells?

We asked many questions on the next surgery. Many. Only an hour after the meeting little Jack was wheeled into the OR and didn't come back for nearly 4 hours. During that time I couldn't help but imagine the worst. That they couldn't revive him or he stopped breathing or they found something worse wrong. By the end, I was so happy to see him alive and peacefully resting in his isolette that I really didn't care about his small incision.

For this surgery, they did 5 biopsies of his large intestine and removed his appenidix. Test results should be back on Monday. If his appendix has the cells then the small intestine is probably okay. They would then check the 5 biopsies to see where in the large intestine the cells start and stop, a.k.a the transition zone. In a surgery on probably Tuesday he would have the stoma put in above the transition zone, which means having the intestine exit the body out the abdomen.

If his appendix does not have the cells, then the small intestine is probably not okay. Then in the surgery on Tuesday they would open him up for taking samples of his small intestine. And he would still end up with a stoma, but farther up. Maybe at that surgery or another after it.

Basically, in about 75% of HD cases the transition zone is very clear on the films from the barium enema and x-ray, and usually is somewhere in the lower intestine. For our son, it is definately not clear, so much so that they think that his whole lower intestine is affected, and it could reach through all his small intestine too. This is worst case scenario, but it looks like it may well be the case. One can have a good life without the lower intestine, but things are not so good without the upper one.

So we've gone from hoping for a bad case of constipation to hoping we can save some small intestine.

This really sucks. I'm sorry, it just does. I don't have a better vocabulary than that to describe it. If your child looks sick, you are dying for them to help them get better, whatever it takes. But with Jack, he looks so healthy and perfect. It's so hard to hand over such a beautiful child for yet another operation and knowing that there will only be another on Tuesday.

What they offerred to do today was to do the stoma at the same time as the biopsies and appendectomy but it would be at the junction between the small and large intestine. Although they do believe that the whole large intestine is affected, I'm not there yet. I couldn't handle the thought of giving him this stoma yet. Not yet. I wanted the results of all these biopsies. I want to know if there's any chance of saving any of his large bowel. Please. And I'm not sure if we made the right choice or if we're just subjecting him to another surgery, and nothing could be more painful for us.

Tonight Matt had to rush out to mail or papers to file for a tax filing extension. Needless to say, we didn't get our taxes done in time. Then we stayed late at the hospital with Jack. When Matt got to the post office, there was a big sign saying that they closed at 11pm and it was 11:15. I went online and couldn't find another one that stayed open any later. I couldn't handle it. I broke down over the stupid taxes. Then just now he called and said that a nice woman met him at the door, took our envelopes, scolded him, but stamped them today. It seems like such a small thing but such a large thing. We just need something to go in our favor. I'm tired of bad news day after day. Of nothing ever going our way. I can hardly hold myself together anymore. It's amazing I make it home each night, but I guess some deep part of my brain takes over and drives.

So this weekend will be all about waiting and watching Jack recover from this surgery to get ready for next week's. And I promised Janie that tomorrow her and I will have some fun. She asked if we can go to the park. Baby, what a small order, I'd be glad to take you to the park. I'll push you on the swings as long as you want. Until my arms fall off.


Blogger Jen P said...

Oh Pazel. I'm just so sorry. So very, very sorry. For you. For Matt. For Janie and for Jack.

I went to University with a boy who had lost almost all his bowel and showed me his 'cool scars' and I know it's no consolation for what's going on now, but he was an awesome kid.

There's hope for Jack. He's an amazing boy and you are an amazing woman.

Hope you and Janie have fun at the park. Thinking of you.

1:50 AM  
Blogger The Lioness said...

I am hearbroken for you, Pazel, I truly am. It must be so hard, not only to have your child so sick but also to not be able to help him at all, to have to rely on others for everything other than the basic comfort. Being powerless is a horrendous thing.

I am hoping for good news, as always, and thinking of you. I often do during the day, and it's the first thing I do in the morning, check how little jack is doing. We are all here, Pazel, different times, different continents, different languages - all here, all rooting for your son, for your family.

2:05 AM  
Anonymous Anna V said...

I'm so sorry. Bowel disorders really are so hard to get your head around especially when your child looks so well.

I know I suggested this before but I'm going to suggest it again -- the guardian society at yahoogroups. com are really useful.

And finally, don't hit me or take me seriously but do they have to use the appendix? Is it too late to veto that? If you use the appendix now to biopsy the ganglion cells, you lose the option of doing a MACE, Malone Antegrade Continence Enema later although you still have the option of a Chait cecostomy.

::sigh:: The Chait's a perfectly OK option but the appendix can be useful in later years with these kids. If you are already doing biopsies then I'd prefer to use bowel tissue rather than have the appendix removed.

I'm really torn here BTW about overwhelming you with stuff as opposed to not saying it. You don't know me from a bar of soap but I'm worrying here for you and Jack.

4:38 AM  
Anonymous Anna V said...

Oh and crap, just award me Reading Comprehension Skills of the Week. I am so sorry that I was sitting here blathering about saving the appendix when it is already being used. Way to go with the tact thing and all that, I'll just be over here wearing the idiotic Assvice Award of the week.

4:44 AM  
Anonymous Soper said...

Oh, P. This is not how it is supposed to be.



5:45 AM  
Anonymous Anonymous said...

Pazel--I'm so sorry for all you and your family are going through. You're in my thoughts.

~Lisa | Brooklyn Girl

6:02 AM  
Anonymous Menita said...

Oh God Pazel. My heart breaks for all of you - I am so, so, so sorry.
I can't even fathom how awful each second must be.
I wish the collective good wishes of all of us out here rooting for you could make things better for you.
Will keep checking, will keep hoping.
Much love,

6:38 AM  
Anonymous terri c said...

Oh Pazel. Was so hoping for a mild case if it had to be anything. God, this does most certainly suck. Thinking of you as hard as ever I can.

7:03 AM  
Anonymous Julie said...

Thinking of you and your family. Thank you so much for sharing this with us. As awful as it is, as hard as I know it is to write about it while living it, it's a great gift to keep us up to date.

7:25 AM  
Anonymous Mandy said...

Pazel - honey I'm so sorry you're going through all of this. My thoughts and prayers are with you now..I wish there was something I could do.

7:55 AM  
Anonymous Lisa V said...

I am so sorry. Thinking of you.

7:55 AM  
Anonymous Anonymous said...

I wish that I could be a soft place for you to fall. I am so sorry for the worry, and surgeries and pain and decisions and the lifelong health concerns that you and your son will have. Please accept my love and sympathy. I hope that something starts to go better soon. I hope you and Janie have a good time at the park and come home with sand everywhere. Jack is gorgeous, by the way, as if you didn't already know.
Heather Ann

8:12 AM  
Anonymous deborah said...


I am simply floored by how strong you are able to be for your son. This whole ordeal is so terribly, terribly wrong...the Universe owes you big time.

Thinking of you and hoping fiercely for better days ahead.

8:37 AM  
Blogger That one chick said...

I just found your site through Julie's site and I have to say that even though you don't know me at all I am rooting for you and your whole family, little Jack most of all. I hope you have a better week, and things go as well as they can!

9:02 AM  
Anonymous Anonymous said...

I'm sorry. My prayers and good wishes are with your family.

9:24 AM  
Anonymous Louise said...

God, I'm sorry Pazel. Poor little baby. This isn't a fair start, not a fair start at all.

9:39 AM  
Blogger wessel said...

Pazel, I don't know what to say except that I'm sorry you are going through this hell, and that I hope for the very best possible outcome. Hang in there.

11:37 AM  
Anonymous amanda said...

Oh, Pazel. I am so sorry. So very sorry. You are such a strong mama. You, Matt, Jack, and Janie are all in my thoughts and will continue to be so. I just wish there was more I could do.

12:19 PM  
Blogger getupgrrl said...

Thank you so much for keeping us updated. I've been thinking about you nonstop. Please let me know if there's anything I can do. In the meantime, just know that I am holding you all in my heart.

3:50 PM  
Anonymous Ninotchka said...

It seems like not nearly enough to say I'm sorry and that you're all in my prayers but sadly that is all I can offer. Thanks for keeping us updated. I'll be thinking of you!

4:03 PM  
Blogger chris said...

You're absolutely right. This sucks. I'm so sorry. I hope that years from now, this is just a blip, and you have good things from here on.

Take care.

6:23 PM  
Anonymous Julianna said...

Just so very heart sick for you and your family. Know that you are in my thoughts and prayers. Thank you for keeping us updated during this painful journey.

6:29 PM  
Anonymous Anonymous said...

What a mess. I've been reading and hoping things would turn around for you. I know it is so hard to go home at night and leave him there. I can't wait to read how it is when you take him home.

6:35 PM  
Anonymous Anonymous said...

Pazel, I'm so sorry for what your beautiful baby is going through. Hang in there. You and your hubby are stronger than you know.
(Assvice, God is there for you)
I work for a tax professional, DO NOT WORRY about the tax return thing. I do believe you have a very LEGITIMATE excuse for the extension/non-filing. The IRS is not always as evil as everyone thinks!
Much love and prayers to your family and for your beautiful baby!

8:06 PM  
Anonymous The Mommy said...

I'm crying reading about your struggles with NICU and the challenges you are all facing. I went through a very similar situation when my son was born over five years ago (NICU, imperforate anus, bowel issues, jaundice and multiple other issues). I will keep you in my prayers and think of you and your sweet baby boy often. God bless you all.

11:09 PM  
Anonymous B. Mare said...

Pazel, I just wanted to say I am thinking of you and your family, and am checking in with you for updates. And hoping things are better soon.

3:51 AM  
Anonymous Anonymous said...

you are in my thoughts and prayers every day. much love

4:18 AM  
Anonymous Anonymous said...

We're thinking of you and your child.

4:38 AM  
Blogger Cass said...

I just wanted to let you know I'm thinking of you, too, and hoping for the best possible outcome at every step of the way.

9:35 AM  
Anonymous Anonymous said...

My heart is with you and your family.

2:15 PM  
Anonymous alex said...

Pazel, I read what is going on and it just is heartbreaking. I cannot imagine how horrible and painful it must be to see such a perfect baby dealing with what he is dealing with. My heart aches for you and your husband....I will keep wishing things well as all of us are.

THis is so sad.

2:43 PM  
Blogger Moxie said...

Oh, Pazel. I'm so sorry for you.

And I can't believe no one at the post office told your husband you can file your extension by phone. Unconscionable.

2:48 PM  
Blogger Anna H. said...

You are all in my thoughts Pazel...


7:49 PM  
Blogger amyesq said...

Still thinking of you all and praying for you and for Jack.

8:51 PM  
Anonymous Anonymous said...

I'm so sorry Pazel.

You and your family are in my prayers.


8:56 PM  
Blogger Erin said...

As mothers we never want to be put to the test to find out just how strong we can be when we have to do it for our child. I know you will find strength you never knew you had.
I am so sad that Jack has to go through this.

7:33 AM  
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