I'll be there with Dave, Brooke, and Braden. We are using Dave's parents time share after the conference to hang out in San Antonio for another week! I hope there is lots to do!
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June 25-27, 2009 in Corpus Christi, TX
June 25-27, 2009 in San Antonio, TX
July 9-11, 2009 in Corpus Christi, TX
July 9-11, 2009 in San Antonio, TX
July 16-18, 2009 in Corpus Christi, TX
July 16-18, 2009 in San Antonio, TX
July 23-25, 2009 in San Antonio, TX
July 23-25, 2009 in Corpus Christi, TX
I'll be there with Dave, Brooke, and Braden. We are using Dave's parents time share after the conference to hang out in San Antonio for another week! I hope there is lots to do!
Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url
My husband and I really want to go, so hopefully! San Antonio is about eight hours away from us. If we go we will have to bring Isabel; I think I would have a panic attack being away from her for more than an hour! Realistically she will be on Oxygen still (nasal cannulas). Is anyone bringing there cherub with Oxygen? She is very stable right now, and she will turn one in June.... I think I am just a little apprehensive about the long drive.. but we want to take advantage of this conference being so close to us, and we want to meet everyone!
Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.
It is so exciting to hear of all the members that will be attending conference.
The memories we will make...will last a lifetime.
If you are coming solo---make sure to bring your photo albums. So we can share our CHERUBS.
Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]
Elizabeth, I'm sure there will be other cherubs with other issues and maybe 1 or 2 on oxygen. Just make sure to bring to bring your concentrator and a few extra tanks and you should be fine!My cherub was on oxygen for 2 years so I feel for ya but it's definitely managable and we'd hate for you to miss out!
Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.
Founder and President of CDH International.
Executive Director of:
CDH International USA
CDH International UK
CDH International Canada
CDH International Switzerland
CDH International Netherlands
CDH International Singapore
CDH International Hong Kong
Messages may be answered by CDHi Team.
Thanks Dawn... its good to know that I am not alone! We actually only get oxygen tanks. When Isabel came home from the NICU about three and a half months ago, our pediatrician seemed a little apprehensive about having a concentrator because of the fact that it does not always put out 100% oxygen... I know so many infants are on them, and they just seem a lot more practical. Our oxygen delivery has to come out all the time to switch out the tanks! We definately need to push for a concentrator; I don't know how we would be able to fit so many tanks in our car when we drive to San Antonio!
We definately need this vacation!
Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.
Elizabeth, reading your post made me think of my first Aussie conference. Liam had been home for 4 days and we were so excited to be taking Liam to meet all these fabulous CHERUB people.
Liam was 5 months, still had his O2, tube fed and slept the entire time - LOL.
Boy, what a feeling to meet people face to face who have lived what we had! I will never forget meeting Danielle (our pres) and just feeling that we werent alone.
I hope you guys get to go. I know the drive is a drag (mind we only had 40 mins) but it will be worth it.
Hugs
Shaz x
Sharon - mum to Liam - 30/04/03 RCDH- 2 CDH repairs- Vent: 22 days- oxygen: 315 days- ectopic right kidney- NG Tube: 3 years & 7 months Chelsea-Rose - 08/03/99 Co-Rep for Australia - sknott@cherubs-cdh.org http://i281.photobucket.com/albums/k...nLiamsmall.jpg
Girl. Get a concentrator, holy cow. Michael has always used one and it's never been a problem (unless the power goes out, but that's what the tanks are for!)
Walgreens can provide you with a portable concentrator too, for the road, you just have to push them. Hopefully your car is tougher than my Civic, though. I tried plugging the concentrator into the lighter outlet like you're supposed to and it not only blew the fuse but it melted the connector. Whoops. They do have batteries that are good for a few hours at a time, but that's more for walking around.
For that teeny bit of O2 that Isabel needs you'd be fine driving down with just one M60 tank (one lasts for over 7 hours for me at 3 LPM, and you're using a tiny fraction of that), but I definitely wouldn't travel for more than a day trip without a concentrator. You could also talk to Walgreens about getting supplies while you're in San Antonio, they must have offices there.
~Mel Mother of Michael: RCDH- ECMO (11 days)- cranial evacuation- VP shunt- hernia repair- g-tube- Nissen fundoplication- pyloroplasty- ASD and VSD closures- tracheostomy- hypospadias repair- pulmonary hypertension...but what he lacks in lung capacity he more than makes up with charisma!
Liz, just get a short O2 tubing. The further the oxygen has to go, the less you actually get with a concentrator.
cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg
Info finally posted!!!
http://cdhsupport.org/members/viewto...823&highlight=
Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.
Founder and President of CDH International.
Executive Director of:
CDH International USA
CDH International UK
CDH International Canada
CDH International Switzerland
CDH International Netherlands
CDH International Singapore
CDH International Hong Kong
Messages may be answered by CDHi Team.
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