Tuesday, April 19, 2005

Day 9 - Evening Update - Stoma

This morning we got the news that the HD has only affected half his large intestine. (YAY!) The doctors were very surprised as they expected that all his large intestine would be affected, and possibly some/all of his small intestine. This will make a huge difference as to his future quality of life. Our big gamble to not put in the illeostomy during Friday's surgery and instead wait to see if any of the large intestine was okay actually paid off. We could not believe it. Something good has gone our way for this little guy.

Who ever thought we'd be happy that our son would get a colostomy?

Of course our joy was overshadowed by reality. The nurse practioner gave us directions on how to care for a stoma and it is very detailed and seems overwhelming. She said that tomrrow we will learn on dolls, then eventually try our skills on Jack. She also went on to explain how we will probably be bringing him in to their clinic once a month to get everything checked out until his final surgery 8-12 months from now.

The physicians stopped by to talk about his next surgery, the one to put in the stoma. The neonatologist also talked about all the possible side effects of having a stoma and of later having the final surgery. There will have to be a few dietary things to watch for lifelong, and potty training for pooping may be delayed, and he may get bad diaper rashes as an infant. So far nothing we can't handle.

The most surprising thing was that he did end up on the surgery schedule this evening, and has only been out of surgery the last 3 hours. We thought it wouldn't be until tomorrow.

It's hard for me to look at the stoma. They describe it as a rose bud, but to me it looks like tiny lips puckering on his abdomen. There is a clear bag on it which right now only has blood in it. Very scary. Very intimidating. I'm hoping to be able to hold him tomorrow, but I'm a little scared.

I hung out tonight watching him after the surgery because he was in some pain. They were giving him morphine, but it didn't seem to help. If they'd lightly touch him or talk he'd wake up and make a cry face. Very sensitive. When I left they were ordering him a morphine drip so that he could get the medication more regularly. I hate the pained and tired cry. I hope that after this we won't have to hear it again for a long time.

So the good news is that the surgeon says we should be able to start feeding him in about two days. The closer we get to feeding him, the closer we get to taking him home.

The bad news is that this is all still so very hard to take. Sometimes I'm right on top of it, smiling and ready to learn and accept. The next minute the wave crashes over me and I'm feeling scared or sad or angry or still in shock or some combination of all or any. He's just a baby. It's not fair to start out life this way.

I could continue, but I'd better not. Then I'll just start crying again until my nose is all stuffed up and I can't sleep.

Today the neonatologist told us that since this is genetic, we need to speak to a genetic counselor before we have another baby. We told him that we were done. For sure. I had my tubes tied at Jack's birth and everything. I'm very glad we did it at his birth and not afterwards so that he will someday know for sure that it's not the HD that kept us from having more babies after him. Actually it was the infertility rollercoaster nightmare and a chance to escape it while we had a chance.

Tomorrow will probably be a tough day as he is recovering from tonight's surgery, but I'm glad that we're now headed towards home. There's much that I have to do and learn and get over, but he's going to be okay. I just know it and have to believe it. And that's all that matters right now.


Anonymous Menita said...

Oh Pazel, I am so glad that things being what they are, this is what happened. And of course you're "scared, sad, and angry" - the only amazing thing is that you are only like that at times - I am just amazed at your strength - how do you do it?
So glad, so glad to hear the news is better, that the gamble paid off. That Jack is one lucky kid to have you two as parents.
Hope you do get to feed him soon. Sending much love your way.

2:47 AM  
Blogger TexasMama said...

Oh Pazel, That is wonderful news. I've been reading your story the last week and have cried at every new update. I can't immagine what you are going through, and I'm sure it is still really hard to take this new reality, but he IS going to be OK. I'm so glad!

2:48 AM  
Blogger The Lioness said...

Oh Pazel, this is absolutely fabulous news, all of his small intestine healthy! I am so thrilled, poor little thing! And look here, everything medical is intimidating when you haven't done it before, be brave, chin up, dive in, it will be fine I promise you, you will surprise yourself with how fast you master all there is to know. The pain bit is what upsets me every time as well, I can deal w a lot of things and see a whole lot and stay steady on my feet but creatures in pain, especially tiny ones, make my stomach drop. Life is certainly not abt what is evidently fair but we've known that for a while now.

But the drip will work, and the only memories he'll have of this will be from you, his family are going to tell the old tales - and he'll love the attention and the adventureness of it all.

3:02 AM  
Blogger JJ said...

Pazel, I haven't been able to stop thinking of you and Jack and your whole family. I've been waiting for something to turn out better then you thought possible. I'm so glad you're this much cloer to holding him, feeding him, taking him home.

4:24 AM  
Anonymous Anonymous said...

Finally! Your family was more than due for some good news. I'm so glad you got it.
Jack will be sweet-talking your boobs before you know it--I can't wait to hear about the rate at which you're going through the Lansinoh.

5:00 AM  
Anonymous claudia said...

Oh, I'm so glad - this news made me cry with relief. I'd been checking compulsively for news. You are amazing, and so is your little guy.

Here's to a speedy recovery and homecoming!

5:32 AM  
Anonymous terri c said...

Oh, thank heavens for some good news! Everything crossed here for all of you. This IS hard, and I hope it helps to know that utter strangers are thinking of you and Jack.

5:33 AM  
Anonymous Julia R. said...

Wanted say you and your family and especially Jack have been in my prayers.

I am glad that you have some answers and there is a plan. To me, as a mother of two children with a life threatening chronic illness, it is always the unknown that throws me.

You will find that you have strength you never knew you had, a support system of friends and familiy that will amaze you, and the wonderful ability to appreciate the milestones that Jack will cross like no other mother you know.

I don't know when, but I promise, the time between the bouts of saddness will increase and you will wake up one day and it will feel normal. Not the normal you once dreamed of, but the new normal that is now your new life.

I wish you peace.

5:37 AM  
Blogger Floyd said...

Thank goodness for some better news. So relieved to hear something positive for little Jack.

I can only begin to imagine how overwhelming this must all be but your strength is amazing and inspirational.

Sending much love your way.

5:43 AM  
Anonymous Molly said...

Delurking to tell you how happy I am that only half of Jack's large intestine was affected. Hoping him a speedy recovery and homecoming.

6:24 AM  
Anonymous deborah said...

Finally! The good news you so deserve.

I'm now shifting my hopeful thoughts to a speedy recovery for Jack. It's time to get him home where he belongs, so his mom can shower him with love him 24/7.

6:30 AM  
Blogger Elizabeth said...

Delurking to say that you and your family are in your thoughts and prayer. I'm so glad that you finally got some good news.

6:45 AM  
Anonymous Anonymous said...

Hi, Pazel, lurker here. I hope I'm not repeating stuff already said. I had an ileostomy (like a colostomy, but it's the small intestine coming through the abdomen) for about 3 months. You said it was hard to look at it on Jack, which I can understand because the first time I looked at it on myself I cried. (I got used to it though, and then fortunately it went away w/surgery #2).

If no one brings this up, ask if you can have a nurse come to your home. Undoubtedly you will end up with further questions that an ostomy nurse (yes, there are such things) can answer and help you out. And, thank goodness for it being only half the intestine--that is fantastic news!!

bec :D

7:35 AM  
Anonymous Soper said...

I am so happy that you finally got some good news!

7:47 AM  
Blogger cat said...

This is really great news. Congrats to Jack and your whole family. I hope the news continues to be good and everything falls into place.

8:38 AM  
Blogger obabe said...

I'm so glad to hear things are looking up for you all. Hopefully you'll be home by the end of the week. Before you leave, definitely speak with an ostomy nurse- they had tons of tricks up their sleeves and know lots about the creams youll want to use, etc. (ask them about sensicare and/or ilex- these saved us!)
And youre right- the stoma is nothing pretty to look at, but as I'm sure theyve told you, its very swollen post-surgery, it shrinks alot within a few weeks.
Babies are amazing-your Jack has proven this, coming through this so strong. My thoughts and prayers are with you constantly.
orahkatz at gmail dot com

8:54 AM  
Blogger Dee said...

So glad to hear that you've finally gotten some good news and that the wait paid off. Your strength is amazing and inspiring and Jack is one lucky kid to have you, Matt, and Janie as his family. Together you all can get through this and anything. Plus, you've got all of us out here rooting for you too!

Sending you lots of love....

9:55 AM  
Anonymous Anonymous said...

I'm glad to hear that you've finally gotten some good news! You guys are in my thoughts and prayers.


11:46 AM  
Blogger Wavery said...

Oh Pazel,
I'm so relieved for you. That is huge news. The stoma does sound difficult but it also sounds like your instincts were right on. Hope your doing well with all else.

12:08 PM  
Anonymous Yatima said...

Delurking to say I am thrilled and awed that you saved so much of Jack's long intestine. You've made a huge contribution to his quality of life. So very glad you finally got some good news.

12:54 PM  
Anonymous Anonymous said...

It's such wonderful news to hear that Jack didn't have to have an ileostomy. My best friends mother has one and she has real issues if she gets sick because of the loss of nutrients. Hoping that things keep working in your favor and that Jack is home soon! Hang in there too, I'm so sorry it's been such a bumpy ride.

1:06 PM  
Blogger Jen P said...

Pazel, this is tremendous news. Hooray for Jack!! And I'm so glad you're going to get to feed him soon and that he'll be on his way home in a matter of time.

Wishing you all the best!

4:36 PM  
Anonymous Anonymous said...

I'm so happy to hear your instincts were right, and so looking forward to more good news. You're doing an amazing job advocating for him. Can't wait for when he goes home!

4:37 PM  
Anonymous Heels said...

I have been checking this blog frequently for updates. You and your family remain in my thoughts and prayers and it is my hope that dear Jack heals quickly and is home with his big sister as soon as humanly possible.

This will mean nothing right now, but a friend told me not too long ago that after her child was seriously ill for a significant period of time, she knew all was right with the world when, one day, something happened with her children at home that annoyed the daylights out of her. She knew then that things were getting back to normal--she could be plain ole annoyed instead of desperately worried. I want you to have a "getting back to normal" for your family.

Take care of yourself and y'all will remain in my prayers.

12:08 AM  
Anonymous sara said...

I've been following your story since Julie alerted us to it.

And I'm so, so, glad to see the news that so much less of his innards are affected than the doctors originally feared. That the worst case scenario didn't come to pass, and your mama instincts not to go for the shortcut were confirmed.

Sometimes I've found that good news like that (which is still mixed, of course, because he still had to have surgery and an ostomy) is followed by the crash of so many emotions you've been holding at bay....

I'm praying for you all, for him to get to finally suck on something more satisfying than a pacifier, and for him to come home for real, and soon.

11:24 AM  
Anonymous Amy said...

I'm so happy that the news is good. But I'm sorry it is still all so overwhelming. You have every right to be scared, sad and angry. Just becuase it could have been worse doesn't mean you don't get to feel those things. You guys got a raw deal and you deserve to grieve a little. But overall you sound like you are doing really well given all the ups and downs you have had so far.

P.S. I just wanted to add that I'm sorry for sharing that story about my co-worker the other day. I don't think I realized at the time how many varying degrees of this disease existed and I felt bad after posting it becuase I was afraid it came across as trying to minimize what you were going through. That certainly wasn't my intention but I think it sounded that way. Anyway, I definitley opened up the flood gates with my co-worker. She seemed so grateful to have a chance to talk about it. Since her son is doing so well and had so few complications after successful surgery she said most people have forgotten that he was ever so sick and she rarely has a chance to share how scary those first few weeks were.

Wishing you and little Jack all the best. I hope you are all home together where you belong very, very soon.

1:30 PM  
Anonymous another amy said...

Pazel, I am very happy to hear such good news for you and Jack! I've been following along from Julie's site and you are in my thoughts. Hoping that he recovers quickly (and you too...)and that you all get back to some sense of "normal" soon....

6:33 PM  
Blogger Erin said...

What a relief it must be to get some good news. It sounds like it's going to be tough, but everything is going to be okay.

7:26 PM  
Anonymous Anonymous said...

Pazel - first congrats on your good news!!! I'm sooo happy for you and will continue to pray for little Jack. So, this next bit is for (hopefully) not so far down the road when Jack comes home and things get to that wonderful place called normal. You have WAY more imortant things to think about now but someday this might help. Just wanted to let you know that babies have much less diaper rashes in cloth diapers vs. disposible. Just so you know there are vast improvements on the big cotton square, safety pins, and nasty plastic pants. Todays cloth diapers are as easy to use as disposibles, chemical free, much cheaper and better for the environment. But I thought the diaper rash thing would be the most important for you. I've been using them for 8 months now and my little guys has yet to have a diaper rash. If you are interested you can get more info at www.diaperpin.com and www.motherofeden.com (the manufacturer of "Fuzzi Bunz" which is the brand I like best). If you aren't interested you can tell me to go pound salt. :)

8:05 PM  
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