[zoies_momhrhs]

Hello, I know this is an old post but I just wanted to let you guys know that there are a lot of sucess stories with the Norwood/Glenn/Fontan Procedures! My child being one of them. I know the oldest living person with the operation preformed by Dr Norwood himself is 21. Zoie is yet to have her Fontan and yes eventually she may need a transplant. She has Hypoplastic Right Ventricle, TGA, TA, and got the BT shunt at 3 days old and 4lbs. We were in for about 5 weeks after and she had no major problems. Her Glenn we were in and out it seemed a week only. I just wanted to tell you that this is not prolonging the pain and suffering. It works for some and not for others you never know why. I belong to a group called www.hopeforchildrenwithhlhs.com you can check it out to learn more about survivors and what they go to through also...sara
I need to know if someone have some experience in the management of Norwood (stage I) post op: opened or closed sternum, what drugs you use, kind of ventilation.... We are having a high number of deaths, so ... I hope someone could help.

Thanks.[/quote]

[skemergirl]

Statically, these children have a low chance of survival due to the bacially single ventricle. We do the Sano procedure (RA to PA). Our Dr was concerned about this new "modified norwood" due to the fact he was putting a hole in the only ventrlie the kid's have, but we have had better sucess with the Sano pricedure. I makes the next stage easier to perform. We have an excellent Pediatric Cardiac Surgeon in Dr Kim Duncan at Chldren's Hospital in Omaha, Nebraska. We have a good success rate so far.

[janfrn]

Originally Posted by skemergirl

We have an excellent Pediatric Cardiac Surgeon in Dr Kim Duncan at Chldren's Hospital in Omaha, Nebraska. We have a good success rate so far.

You are indeed fortunate to have Kim Duncan working with you. When he left his last post in Winnipeg, Manitoba, the program there fell apart, never to be resurrected again. Now all the kids from Manitoba and northern Ontario have to come here to Edmonton, Alberta for surgery. (See http://www.pediatriccardiacinquest.mb.ca for details...)

We have two wonderfully skilled surgeons here, Ivan Rebeyka and David Ross. We're seeing a lot more Sano shunts lately but are finding that a lot of our Glenns and Fontans have very difficult courses. We also are following the neurodevelopment of kids who have had cardiac surgeries, organ transplants and/or have required ECLS. Dr. Charlene Robertson from the Glenrose Rehabilitation Hospital is carrying out this study. No surprises, the kids are usually delayed, some very significantly. But is it as a result of the treatment, or the prolonged hospitalization? Who knows.

[Okiecruffler]

Just thought I'd add my 2 cents since I had a Stage I Norwood Friday and a Fontan last night. Most of our hearts are done by Dr. Christopher Knott-Craig. He still uses the BT shunt for most procedures. we're seeing probably a third coming to the PICU with open chest, usually closed on the second day post-op. A large majority are on CaCl gtts for the first 24 hours. I was going to go thru our basic plan of care, but I keep drifting off at the keyboard.
Had a very interesting case this weekend, a 17 y/o Ebstein's anomaly. Big strong, active kid. Possibly the best looking heart kid I've ever witnessed. Sure, nothing to do with a Norwood, but like I said, I keep drifting off....

[janfrn]

Our most recent kiddie with Ebstein's Anomaly didn't survive infancy. He came to us at about day 10 of life after his first palliative procedure, very quickly went on ECLS, was on for about two weeks, separated successfully but in renal failure, and just never got better. He was in our unit 2 1/2 months; he had never been home.

[Okiecruffler]

Last I heard we were hitting about 80% survivial with our Ebstein's kids which ain't too shabby. But that's kinda KC's thang. They do tend to be sicker than snot for at least a week tho'.

[zoies_momhrhs]

Here I am again posting on this old thread, I don't know where a lot of these hospitals are that are having such terrible survival rates with the norwood. Hospitals like CHOP, CHOA, UofM....are having really good results. I think a lot of parents choose hospitals that are known for their cardiology units too. My daughter had her Fontan in June of this year and is done with the bt/Glenn/fontan track and she is doing wonderful! Her stats are still in the mid 80's but are expected to go up to low 90's when her fenistration closes. I just pray that things continue to go well and we have no more PA stenosis...(say a prayer for us)...I am still in school had a few set backs with Zoie and had to be out for a while and am just now catching up. Hope to be doing more at the new year.Sara

[sirI]

Originally Posted by zoies_momhrhs

Here I am again posting on this old thread, I don't know where a lot of these hospitals are that are having such terrible survival rates with the norwood. Hospitals like CHOP, CHOA, UofM....are having really good results. I think a lot of parents choose hospitals that are known for their cardiology units too. My daughter had her Fontan in June of this year and is done with the bt/Glenn/fontan track and she is doing wonderful! Her stats are still in the mid 80's but are expected to go up to low 90's when her fenistration closes. I just pray that things continue to go well and we have no more PA stenosis...(say a prayer for us)...I am still in school had a few set backs with Zoie and had to be out for a while and am just now catching up. Hope to be doing more at the new year.Sara

Hello, zoies_momhrhs,

I know we have not met. I am Siri. I am so very glad your daughter is improving.

I have limited experience with the Norwood, but, I do know we have had more success rates than failures. Much more!!

Thank you for coming back and sharing with us the update on Zoie.

Please let us know how she is doing in the future. Our prayers are with you.

[bwpcicuube]

Currently I am the UBE for a Pediatric Cardiac ICU. We usually do between 4 and 8 Norwoods per month and usually have good results. There are many, many, many factors that come in to play with the long term survival of these kids. Birth weight, pulmonary stenosis, pulmonary hypertension, overcirculation, over oxygenation, to name a few. Usually they need to create an ASD in the cath lab first. They tend to do better than just sitting on Prostin until surgery.These kids can not handle oxygen satuations greater than 84% due to the fact that it floods the pulmonary bed thus ending in CHF. These kids are EXTREMELY touchy! If they are crying, even several weeks out of surgery, their needs MUST be attended to. They will clamp down and due to having no reserve they die. I've seen it many times.If you have further needs I'll be happy to help any way I can.

[BSNDec06]

I just helped care for two Norwoods yesterday in the step-down ICU and one today in the PICU. All were closed because they were pretty far out from surgery (in the case of my PICU kid, 9 days post-op). The step-down kids were preparing to go home for a while before coming back for their Glenns. One step-down baby had sats in the high 70's and low 80's on 0.25L of oxygen. The other had similar sats on room air.

The facility I am currently at for clinicals has excellent survival rates (they say that they're the best in the United States). Many parents choose to come from other areas of the country to get the best care for their children.

http://www.chw.org/display/PPF/DocID/32706/router.asp