I need a boost, guys. Tell me something good.

[ebayfool]

My youngest grand-daughter (4 yrs old) was diagnosed with Hirschsprung's Disease today. I've been the mom all day, staying upbeat & strong - but now everyone's asleep & I'm just worn out. We've been through the ostomy thing before, her big brother had his first colostomy when he was 4 days old & the ileostomy @ 6 months. It took 5 years before he was returned to a place where he could thrive & have a chance at a fairly normal life (he's now 14 & light of my life). I've raised him since almost birth, my daughter didn't hold up well under the strain - long story, that. But she finally straightened her life up & has had 2 beautiful little girls. They both had the symptoms when they were babies, but was managed w/out resorting to surgery. Claire, the baby, hasn't fared well over the last year. She has gotten worse, & barium xray today showed she has an extremely distorted megacolon. I know she will come through what lays ahead, but I also know how rough that road is. This place has become my refuge, lately. I really need to hear something, anything, on any subject - good!

[LWolf]

1. Something good:

My 5-year-old grandson just came through his 2nd open heart surgery with flying colors last month. He not only survived the high-risk procedure, he experienced a "best-case" scenario, has healed amazingly quickly, and is thriving and able to live like a normal 5-year-old.

The rest of our lives have been challenging, but our little boy is not only ok, but thriving.

I send good thoughts for as positive an outcome for your granddaughter.

:hug:

[ebayfool]

3. I remember reading here @ your boy, LWolf. Amazing how these

grandkids grab hold of your heart as soon as they're born, isn't it? I'm holding the "best-case" scenario close, I really believe she will have a better time of it than her big brother did - this time we have experience & know what to watch out for. I think when they go in for multiple surgeries like that, it's scarier because you know what they are going to be going through & are more aware of the risks.

When they come out of their trials & thrive like your boychick & mine, it makes up for all the fear - I know. We just really hoped none of the other kidlets would have to experience what Gabe did. It's good to have a place to come to & ask for a hug, grandmas get scared too. Thank you for that. I'm so glad to hear your boy is doing so well now, he went through some really rough stuff. One side effect of spending so much time in pediatric hospitals, no matter how bad my boy was doing - there was always another child going through something just as extreme or worse. (Made me rabid @ kids & seatbelts!) They had babies having heart surgery while we were there, that's got to be absolutely terrifying.

:hug: for the something good!

[davsand]

2. I'm sorry to hear about your grand daughter's problems.

I took the time to read a bit about Hirschsprung's Disease before I posted a response. I wanted to try and understand it a bit. It sounds really scary for you guys, but the long term results DO sound encouraging...

I don't know if "guilt" played a role for your daughter when her son was diagnosed but I can't help but wonder about it. It is very common for ANY parent to feel somehow responsible for any and all health issues in kids. I used to work with parents of SSI kids, and I was amazed at how our government almost counted on that guilt to keep parents from fighting for the kids' benefits.

I was born with cleft palate and cleft lip, and my Mom has talked about how she was made to feel guilt by the very organizations that were supposed to be helping! Please re-affirm to your daughter that this is nothing she did wrong--OK?

I was also noticing as I looked at the literature, that there is a technique that uses laprascopic surgery rather than open incisions. I DO hope that is possible for your little one--it looks like that can be a lot faster to recover from.

Plus, it sounds like they can maybe do that surgery in one trip, rather than several steps over a period of time. THAT could be a big boost to your grand-daughter to get this corrected and be able to return quickly to a normal life.

I know you feel scared, and I know it is awful to see those little guys feeling sick. It is especially awful when they seem OK before surgery and then come out feeling bad, I think. My Mom has commented on that several times, too.

Please, try to remember how very bright the outlook IS in these cases. The stuff I looked at reported overwhelmingly positive outcomes in these corrective surgeries.

May all your paths ease soon, and please know I'm sending you all hugs and my brightest blessings.



Laura

[ebayfool]

4. Thanks for the something good, Laura.

I did the same, Google-fest for most of the night. I wanted to see what kind of new stuff that had since Gabe's surgeries. I was really hopeful when I saw the laprascopic technique, that wasn't around for him. We won't know till the surgeon reccomends his best course, but it would be a major big improvement. UCLA is tops for this kind of thing, they ended up taking our boy when he was @ 6 mo & repairing the damage done by another doctor (who didn't have the experience he claimed - we didn't find that out till he damaged the intestine & left him w/gangrene). There's a doc at UCLA named Fonkelsrud that pioneered a lot of the work on this disease, he's the one who patched up Gabe. He's retired from surgery now, but still teaches there. The doc we have now was his student from Gabe's time there, his top resident. He's had over 10 years getting more experience & has replaced his old sensei in the gastro surgical dept. He's already said that Fonkelsrud will scrub w/him - he wants to follow the family as much as he can. So I'm feeling really good @ having 2 of the best taking care of Claire. They are also very considerate @ minimizing scarring for her, something they couldn't do for Gabe. I know she will be okay, I trust these 2 men. I'm just very aware what's ahead, they don't give a clue of what's involved w/the recovery process. That's what is so hard on the kids, after the surgery. This time should be much better though, she's older & stronger - no mess for them to try & clean up . But she's just so damn small, & so tired of being sick. The constant infections have just worn the punkin down. I'm a big believer in the power of positive thinking - you draw results w/strong belief. This girl will come through strong, & thrive (as LWolf said of her boy above)! I really believe & feel that.

You're right @ my daughter feeling the guilt, it drove her to drugs & a place where I couldn't reach her for a long time. She hurt herself worse than anyone else could possibly dare. That just compounded the guilty feelings for her, she felt like she had failed him as a mom. In the last 5 years she started confronting that guilt, learned to finally forgive herself (that's the hardest thing for anyone to do!) & started to live again. She re-established her relationship w/Gabe (he didn't want to move back, he had been w/me so long that he feels it's his home) married & has damn near turned into a classic 'soccer mom'. After hearing this yesterday she has been a basket case, it's bringing up a lot of old hurts & memories for her. I'm about as worried @ her as I am the baby, so we've been on the phone most of the day. She's not 20 yrs old this time, she wiser & stronger - but I know that she needs good backup to get her through it. She said that it feels like a karma call for her - that she's being given a chance to do things differently ... I think she can come out of this w/maybe a little more healing of her own. I'm seeing a determination there that was missing before, this could help her in ways I could never touch (I'm hoping I'm saying this in a coherent way - she is a good mom, but she's got that little seed of doubt. I think this could smooth away those seeds, as long as Claire comes through okay.)

[Quakerfriend]

5. Another good story :

You must be a very strong person, djmadoxx1! We shall all be channeling love and energy your way.

Though I did not have Hirschsprung's Ds., I too had multiple surgery's as a baby. Weighed less than 3 lbs. at one point...and that was in 1958!

The doctors told my mother that I would be deaf and blind, and severely retarded. Though I am now the proud owner of my first pair of 'granny glasses'and I do need quiet to hear when I'm on the phone, my life has been just about perfect.

The lessons of love that I learned as I 'watched' my mother, over the years, have been the greatest gift of all. She went from one doctor to the next with her positive spirit and endless desire to find a way to help me. When one plastic surgeon told me that I would just have to live with what I had (large abdominal scar) she just took me to another doctor. He gave me the operations I needed and a beautiful new tummy. I was also able to have my kids because of his wonderful surgical abilities.

When I was pregnant with my first son the team of medical geneticist (at CHOP in Phila) spent 6 hours quizzing me about my medical history.
They were astounded at the 'true fontanels' I have in my scalp, the extra vertebrae, etc, etc...and even more astounded at all that I have been able to do...ski, play tennis, swim, play 3 instruments, get my PhD, and etc.

I chalk it up to my mother's incredible can-do spirit and belief in miracles. The circle of love goes round and round. I am now able to care for my mother with that same courage and strength she gave me.

I hope my story lifts you up today, djmaddox1! Keep your head high and please know that we are all sending our healing love out to you and your daughter, and grand baby Claire.

[ebayfool]

7. That's a wonderful story, your mother's love comes through it so clearly,

as well as your love for her! I love it, this is the kind of sharing that lifts up anyone that hears it. Thank you for the inspiration & love for our girlchick!

DUers ... the best!

[vanboggie]

6. Grandson born w/Hirschprung's

Take heart dj, that there are more things they can do for the disease now. Our grandson was diagnosed with Hirschsprung's shortly after his birth with little hope for survival. Since then there have been multiple close calls, but he has made it through and is now a teenager. At one point I contacted someone from the Hirschsprung association, and they told me they knew of only one case worse than his in the country. A year ago he had a successful small bowel transplant in Nebraska. As I understand it, that is still a relatively new surgical procedure, but he came through it OK. When he was born, such things were not yet feasible.

Since Hirschprung's presents itself at varying levels of severity, I am guessing that your granddaughter's future will be a little easier than it would have been 14 years ago. It won't be without worry, but we've seen medical advances in those years that she should benefit from.

Best wishes to you and your family.

[ebayfool]

8. You are the 1st person I've 'met' that had a baby w/ this condition,

& I feel so lucky that our kidlets were not as badly affected as your boy was - I'm so glad he is doing well. I've heard that they were able to do the transplants, but only for the most extreme cases - your grandson as well as his family has to have been through hell & back. This is a perfect example of what I was getting at in the earlier post @ there always being someone who has it harder. I'm so pleased that they made the advancements to help babies like your boy. I know our girl will come through this well, & she should have a great expectation of a pretty normal life in the future. Sometimes those long nights can bring up the fears (those 'close calls' that come up - they're always at the edge of your mind - as well as the unexpected during surgery. That's where Gabe got most of his damage from, the surgeries). But it's a lapse that I can shake off when I need to.

It's just so exciting to think that they can do these transplants now, it was only in the 'planning stage' when Gabe was born (even though his was 'long-gut HD' he wasn't remotely a candidate for something like that). How does it function for your grandson, is it a normally functioning gut? Diarrhea like a pull-through, or does he have to watch his diet? Will he have to take anti-rejection meds for his whole life ... I'm asking too many questions, I know. But you know (I'm sure) how rare it is to run across someone who has a child (adults w/ostomies I've met, but kids or people w/HD - no) w/this - I'm gonna have to call my daughter tonight & let her know! Have you heard that they have developed some kind of blood(?) test (not sure what kind) for detecting HD? We just heard @ it last week from the UCLA surgeon, but didn't get all the details yet. We'll have to find out more @ it when Claire-Bear goes back. That is another astounding advance I hadn't heard of - how wonderful for our kids & their kids! They will be able to have their babies tested at birth, so they can be repaired before any damage to their gut. We have a strong family incidence, from 'Old Papa' down through my father, me, my daughters (both) to my grandkids. The research people we talked to have our genealogy book, & they said that there are 'a preponderance of indications' (LOL - they came up w/that language!) leading to the conclusion that we have direct familial inheritance of the gene (or combination of) through several the branches of the 'Solomon Brewer' line. My great-auntie Opal told me of her cousin's baby in the 30's. He died within a few months of birth, wasted away & couldn't go to the bathroom. The mother's other children were taken from her & she was shunned by the town - the consensus was the baby didn't 'thrive' because she didn't feed it right so it couldn't potty, that it was the mother's fault. Aunt Opal was stunned when she heard @ Gabe & put 2+2 together for her cousin & other babies in the 'olden days' that died so soon after birth & couldn't potty. The absolute hell those poor moms went through, even though HD was discovered (I think) in the late 1800s. Most doctors we've had contact with, in these modern times haven't heard of it (or if they have - only have a vague idea of what it is). So, being able to test will be a blessing for those who haven't had kids yet. The doc said it's not available for use yet, & not 100% spot-on ... but it's there & getting worked on! Modern science - how lucky we are to have our kidlets in these times!

on edit:

Did I mention I haven't met someone else w/a child that has HD? LOL, sorry if I got carried away - but it is exciting to hear how your boychild went through a major, major case & has come through so well! Hearing @ him puts some perspective on the whole thing, we are very lucky. The kids aren't as bad off as they could be & kids w/much more gut involvement have the advances to save them - you have absolutely made my day! Thank you so much!

Ever notice that when you really need something, someone shows up in the most unlikely way or place to bring it to you? Vanboggie, tell your grandson he has helped a boy his age, a little girl, & a family today w/his inspirational story ... & give him a big hug from me! :hug:

[vanboggie]

9. The things you find on DU, huh?

DJ, I'm going to send you a private message. My stepdaughter, his mom, is a saint and has been through it all. As you can imagine, this has been her life for all these years. I'm a terrible grandma, too, because I just realized he is older than 14! He's obsessed with driving cars now. I got stuck in time there for a minute :)

[ebayfool]

10. He is an absolutely beautiful boy!

His mama is a saint, & he is such a sweet looking boy! I told my daughter @ him, her reaction was just like mine - 100 questions & joy to find out they could do the transplants now. She sends her love to all of you. I know @ the driving thing, LOL - it's wonderful to see them look forward to the same things that the other kids do, isn't it ... especially when you thought you'd maybe not see them get that far? I will pm you for the rest, I just wanted to end this thread on a positive note. You're so right, DU has come through again - I've gotten far more than I hoped for in my request for 'something good'! There is something flowing here, the people drawn to DU are just not what you find on any other board I've seen. I wonder if Skinner & the guys know the full impact that they have built? DUers come through every time someone has a need, in some form or fashion!

[Ilsa]

11. From what I remember in nursing school a decade ago,

outcomes were good then, so I bet they are better now.

I'm sorry she is having to go through this. Hang in there. "This too shall pass." Get some good sleep.

From the worrying mother of an autistic son.