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| What should I expect for the first visit...what would you ask the doc?|
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|General Discussion -> VEPTR Operation||Message format|
|We see Dr. Campbell for the first time next week at CHOP. I'm excited and nervous. |
What should I expect for the first visit? Will they do a lot of imaging since we live far away to save us from an additional visit for this? Caleb has only ever had XRAYS.
What are some questions you wished you had asked but didn't?
My son has missing and fused right ribs, 60+ degree curve last time xrayed. He's 10 months and about 14/15 pounds. I think his left lung function is pretty pathetic- never been tested- already has a trach and is on the vent for most of the day. I believe this surgery could help us get rid of the vent and eventually the trach. I am hopefuly and scared about the commitment. Love reading stories about ya'lls kids. Watched the latest CHOP videos. Anyone have any success stories to share about having the VEPTR done on an infant/very young todler?
Edited by mseal7 2011-07-06 8:12 PM
Location: nixa mo
|Noah's eval was at 16 months. He had a VQ scan and a CT, an echo and 3 view chest film and some other tests. That was when Dr. Campbell was in San Antonio. I think they like to wait until the until our kiddos are 20 lbs to operate (if they can wait that long). After our eval Noah had to have a special MRI where we found out he had a tethered spinal cord. That had to be fixed before his VEPTR surgery. I hope all goes well for you.|
I think it's great that you are asking about this now, so you can be prepared for the process that is about to come. We were in the same situation with you over a year ago and had no idea what to expect at our first visit. To be honest, I was dissapointed at first, not with Dr. Campbell at all, or the team, but with the process that is involved. I thought they would talk to us, evaluate our daughter, maybe take some more x-rays and do tests and then schedule her for surgery. It wasn't like that at all. They met with us, talked with us, then decided that she was most likely a candidate, but that we would have to come back for the tests (Dynamic lung MRI, Pulmonary Lung Function Test, Meet with genetics, Cardiology if you have never met with them before, etc...). They couldn't schedule that right away and so we had to go home and wait for them to call us to schedule those appointments. It took almost a month for us to hear back and we finally got the appointments and went. Then we had to go back home and wait for them to call us about surgery. That actually didn't take quite as long and eventually she was able to have the surgery. In our experience, that first appointment was more of an appointment to make more appointments. I don't mean to make it sound daunting, but the first step is the slowest and then after that, the ball gets rolling a little faster. Everybody's experiences with the process are different though, some take longer and some take shorter depending on the child.
It was definitley worth all of it though. Our daughter Ava was 10 months old when she got the surgery and weighed around 14 pounds. She didn't have to use the vent or have any supplemental oxygen, but she was not doing well at all (turning blue and throwing up several times a day). It was miserable for all of us to see her suffering and working so hard to breathe all the time. We were very impatient to get things moving along, but they eventually did. She is 22 months old now and a totally different kid with alot more energy to spare on having fun and living life! She began walking in the last couple months and we couldn't be happier with the decision to do VEPTR. Of course it comes with all of its imperfections and issues to deal with, but the alternative was much worse and overall we have had a good experience with it. We also love Dr Campbell and feel he sincerely cares.
I hope that helps some and that Caleb has a great visit at CHOP next week. I hope they have been able to make things a little more efficient now so you don't have to do so much waiting! Good luck and keep us posted. Also, do you know about the Ronald Mcdonald house? We didn't the first time we went and stayed in a normal hotel but found the Ronald Mcdonald House and it's a great place.
|Hi there. My son, Myles had his first appointment with Dr. Campbell when he was 10 months old. His curve was 80+ degrees when he was 4 months old. He has missing and fused ribs on the left. Originally Dr. Campbell wanted to do surgeryat 12 months but because of scheduling problems we ended up doing it this past June. Myles was about Calebs size at that age. Dr. Campbell didn't seem to see it as a problem. We are from Indiana so the distance thing was a problem for us as well. The very first visit, we just saw him and they wanted to do xrays but we took some recent ones with us. They scheduled all the extensive testing for December. |
My advice to you is to take all the records you can. Xrays, hospital reports, test results. We've had a great experience with Dr. Campbell and Brian his nurse. Hope everything goes well for you all. I would also se about the Ronald Mcdonald house. It is very hard to get into but worth it if you can. Good luck to you and Caleb.
Location: Phoenix, AZ
|Hi. I hope your appointment went well. We feel like Carter's surgery with Dr. Campbell was a success. We live in AZ, so the cross country flights were long for us. Carter had his implants with Dr. Campbell and is having his expansions with a local doctor. If you would like to read about Carter, feel free to look at my website at carepages.com. Then search for littlen8tive. You will need to register,but they don't send you any emails... it is just so that the parents can see who is looking on their page. It's free if you have lots of friends and family who want updates. It was pretty easy to set up. The first entry is the most recent, so it goes back from there. I think you can just scroll back to see the posts from our surgery in Philly last summer.|
|Thank you all. Our trip was successful- lots of discussion/a few xrays. they are working on scheduling the "workup" for August. Dr. Campbell wants to operate sooner rather than later- a suprise for me. But i'm excited for the results it may bring. I hope this doesn't blindside me to the difficult surgery ahead. September is the tentative month for operating. Dr. Campbell described Caleb as a sinking ship that we need to save now and not wait until later- yikes!! Poor Caleb. You all are inspring. Yes- we know about the RMD house- we actually tried to stay there last time but they were full so we got a decent rate at a hotel. Thanks again! I will be following with more questions I am sure.|
Location: Plymouth, Pennsylvania
|WISHING YOU ALL THE BEST...YOU ARE IN GREAT HANDS...ZOE HAD HER SURGERY 11 YEARS AGO |
AT THE AGE OF 2 JUST A FEW WEEKS AFTER MEETING WITH EMANS AND CAMPBELL FOR HER EVAL...THOUGH WE STILL GO
TO BOSTON FOR ZOES 'VEPTRS' WE DO COOR INTO CHOP...ALSO NEVER CAN GET INTO THE RMH...BUT IF YOUR STAY IS GOING TO LENGTHY, I WOULD SUGGEST, IF THE 'CAMDEN AND PHILA. RMH'S ARE FULL, YOU CALL THE 'CHERRY HILL, NJ-HOLIDAY INN'...IT IS JUST 8 MILES FROM THE HOSPITAL, AND THE RATE IF 1/2 WHAT YOU WILL PAY IN THE CITY...ALL THE BEST....KEEP US POSTED AND GOD BLESS...
|IT IS JUST 8 MILES FROM THE HOSPITAL,FIFA 14 Coins kaufen AND THE RATE IF 1/2 WHAT YOU WILL PAY IN THE CITY...ALL THE BEST....KEEP US POSTED AND GOD BLESS...|
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