Friday, July 31, 2009

Attentions CDH Parents.....

I need your help. I know I have a lot of Congenital Diaphragmatic Hernia parents that follow Ava's blog. I have created a poll at the right of the blog. If you are a cdh parent PLEASE take the poll. I am trying to figure out how common it is for our CDH children to reherniate. (For their patches to break or for the muscle to separate and allow things to move back up.)If you have anything further to add or want to share your rehernitaion story with me please email me at mycdhlife@gmail.com Thanks in advance!

In October it will be a year since all Ava's reherniations problems began. I am still stuck with thinking how will this patch be different. They were going to use her own muscle from her sides ands back but they discovered she was so tiny that was just not possible. I was heart broken to hear that they had to place another Gortex patch back inside her to cover the hole.

Ava's reherniation was unique in that her intestines somehow ingested the patch and tried to expel them through her small bowel. And what a great plan they had, except for the fact that they caused a total bowel obstruction when they got stuck. Heh could life ever be easy? We nearly lost her.

We live each day full of wonder and admiration of what this life is all about. Ava and all of the people in my life are gifts from God. We should never take one breath for granted.

Ava's cold is much better today. Still a little runny nose but nothing big. She did throw up the other day but nothing else came of it. So I'm happy to report all is great here at the Helmick house. Thanks for your continued prayers.

~Terri

8 comments:

Shawn said...

Hey Terri,
Reherniation has been on my mind a lot lately as Kamryn gets ready to leave the hospital. I have read that it does sometimes happen as these kids get older, but after talking to our doctors yesterday, they said they rarely hear of it happening. They said the size of the defect could increase the chances, but in their experience they don't hear of it happening very often at all and I really shouldn't be that concerned about it. Not sure if that helps, but it's what our doctors told us.

Shawn

kmm0305 said...

As you know, we went through a very different reherniation than Ava. Leah did have a patch to repair hers initially. When they did the reherniation surgery, the surgeon (different surgeon & hospital) removed what was left. Her reherniation was fairly small and they closed the diaphragm on itself. She was 3 year old (to the day) when it was diagnosed. Just after Easter we were worried something was going on again and had another CT scan done. Everything was fine and we now have a "baseline" CT to compare to if we would need to. Our Dr.'s and even the radiologists at our clinic had never seen a repaired R-CDH.

Kristyn

Liz and Shane said...

We fear this happening but the Doctors told us it is very rare for it to happen without the gortex patch. I am still concerned and I am aware it could happen. Ava has been through so much this past year. I am praying she has a smooth sailing this next one.

Stephanie said...

Hey Terry,

This isn't just happening with CDH kiddos. My Dad had colon cancer about 18 months ago. On his last day of work before the surgery, they had to rush him to the hospital with a HUGE hernia. So he had to have the cancer surgery, heal, then go back and have the hernia repaired. Fast forward about 10 months, he gets another hernia in the same place. They went back in to fix it and it sounds as if the same thing happened - it desinigrated, along with what was left of his abdominal muscle. They put a patch over his entire abdomen from rib cage to pelvis in hopes that this would prevent future hernia/surgery. Not only did it NOT hold up, it was infected with 3 DIFFERENT KINDS of STAPH/STREP/MRSA!!!! They FINALLY had to go back in take ALL of the gortex out, completely clean out his abdominal cavity and then he has to go through 20 days inpatient of high dose antibiotics, then 20 more @ home with a picc line. It nearly killed him. While I don't think all of it was the patch, some of of the issues clearly were. Then the doc, etc. It was sort of a "perfect storm" situation. But I still wonder about that gortex. That episode changed my Dad's entire immune system. That was the first thing he ever had to deal with health wise. It has taken a lot out of him.

You know, it has been about 2 years since that whole phlatates (SP?) thing happened - where they found the chemicals were leaching into the bloodstream of children from baby bottles, toys, etc. When they outlawed that chemical is about when we started seeing a difference in G-tubes, IV bags/tubing, etc. I would think that the gortex would have some of those in it. It would be a crap shoot which you want - a stronger, more flexible material that leaches chemicals - or a more ridgid, less dependable one that doesn't. Sigh...........it is never easy is it?

So glad to see Miss Ava doing better. I think she looks a little different - her face is filling out some. :)

Hugs!

Steph and Christopher

Chanda D Brady said...

I have spent an entire morning reading so much of this blog. I did not sleep well with concern for so many CDH babies, my own situation, etc.....and Ava has helped this morning. I needed to get outside of myself for a bit.
You have a beautiful family and I feel that I've added just another little one to my list of babies to just love and pray for.

Thanks for sharing so much. Chanda

Vicki Jensen said...

Hi Terri,
Jack reherniated when he was 4 months old. Symptoms were severe reflux, vomitting and finally a complete refusal of the bottle. When we did NG feeds he'd throw that up too. Never showed breathing issues like our local doc insisted he would have. He also developed a weird buldge that made noise if he cried or would bear down.

They did his secondary repair through his chest (not abdomen). He had a complication (pericardial effusion - blood) that required a tap. It was scary. As he is getting close to 2 yrs old I think of Ava often and wonder if we're due for another reherniation. I hope not!
Vic

My Three Sons said...

Glad to hear that Ava's cold is getting beter.

whitney johnson said...

I'm a mother of a 34 month old son named Carmello who had cdh on his left side. I'm in the hospital now due to breathing issues from complications of a cold. But everyday I'm terrified of reherniation happening.