Do you ever feel like God puts you in the right place at the right time and you just happen to talk to the right person... I had one of those moments at the Duke Children's Radiothon last week. A little background... I spent a few hours in the morning working on the "phones". I ran into one of Jacob's nurses, Mary Jo. She was a PICU nurse for 17 years and left PICU for the "clinic" just last year. We had a very interesting discussion about the history of CHD and all she has seen. She relayed that many years ago, TGA babies were the sickest she cared for. HLHS babies were basically sent home because nothing could be done. She has seen an amazing amount of advancement in the treatment of CHD.
Later on in the day, I volunteered at the "Merchandise Sales" table, which I loved because I got the chance to talk to lots of people. Anyone who knows me IRL knows I love to talk! One woman, I'll call her, "Lynn" came up to peruse the T-shirts, and other items we were selling with the Duke Children's logo. She was wearing a shirt that said, "I got my New Heart at Duke."
Here is a part of our conversation:
Me: I like your shirt!
Lynn: Yep, 21 months now.
Me: My son is a Duke heart patient.
Lynn: I have been a Duke heart patient many years.
Me: My son has a congenital heart defect.
Lynn: So do I.
Me: Really, which one?
Lynn: Transposition of the Great Vessels.
Me: Wow. That's what my son has.
We went on to discuss that Lynn has had 5 open heart surgeries and two strokes, culminating in the heart transplant 21 months ago. She told me she was born in 1963!! This would make her around 44 years old. She had her first surgery, the Mustard, in 1975. She related she has spent a lot of time in hospitals and her health has obviously not been great. I told her that of course, Jacob had the arterial switch operation, and as she was well aware, that was the only "planned" surgery he would need barring no complications. She was off to work the phone bank, but it was a less than 5 minute conversation that I will NEVER forget. How different Jacob's life will be only because of the advances made in medicine. Dr. Jatene - we thank you & salute you!!
I believe "Lynn" to be one of the oldest living survivors of Transposition & the Mustard/Senning. I did some good ole Googling and found several people who are 35 and claim to be the oldest TGA people. I did find one 44 year old gentleman too. If anyone knows of an older one, I'd love to hear about it.
I do have another Transposition "survivor" story.... it's a good one too. I'll save it for later!
Wednesday, February 20, 2008
Sunday, February 10, 2008
Happy CHD Awareness Week! - Feb 7-14
The reason I started this blog was in part to chronicle Jacob's adventures, but it was also to raise a awareness about CHD and to share Jacob's journey with CHD. As many of you know, he had a very scary start in this world and we are so lucky that we have him with us today. He has a smile that lights up the room.
Tomorrow, on Valentine's Day, I will spend a good chunk of the day volunteering at the Mix 101.5 Radiothon for Duke Children's Hospital. I hope you will take a moment to make a donation, even if it's just $5! 100% of the money raised goes to programs for kids at Duke Children's: sending a DC kid to a special camp; buying toys; computers; magazines; research & development; etc.
Also, in honor of CHD Awarness Week, I hope you will visit this fabulous Learn About CHD Blog:
(and thanks to Emily's blog for making me aware of it!)
Happy CHD Awareness Week!
Tomorrow, on Valentine's Day, I will spend a good chunk of the day volunteering at the Mix 101.5 Radiothon for Duke Children's Hospital. I hope you will take a moment to make a donation, even if it's just $5! 100% of the money raised goes to programs for kids at Duke Children's: sending a DC kid to a special camp; buying toys; computers; magazines; research & development; etc.
Also, in honor of CHD Awarness Week, I hope you will visit this fabulous Learn About CHD Blog:
(and thanks to Emily's blog for making me aware of it!)
Happy CHD Awareness Week!
Friday, February 1, 2008
Monday's Adventure at Epcot
Before I go into the rest of our day at Epcot, I feel like I need to explain why we decided to take a 16 month old to Disney World. Of course, I realize he won't remember the trip. We've been to Disney before and we enjoy it and we hoped it be about having family memories for Jeff and I. I also think that when Jacob gets older, he'll appreciate having pictures of himself with Mickey & Pooh, and at Disney. I'm sure we'll go back, it's not the only trip we'll take, so there will be plenty of future trips when he is older.
The trip was originally hatched in January 2007, when Jacob was but 5 months old. My friend Heather, is a huge Disney fan, and we've always dreamed of taking a trip together. Disney was having a sale for specific dates in 2007 that included 40% off room rates. Some dates were in December, and I had not been at Christmas since I was a kid. Heather's daughter, Caitlin, is exactly 9 months older than Jacob, so Caitlin was going to be 2 and Jacob 16 months. So the original reservation was to go with our friends in December 2007. In February 2007, we flew to Florida to take Jacob to visit my grandparents who are unable to travel to NC. They just loved him to pieces and since we had a trip to Disney planned for December, we told them we'd see them in 11 months, and they were excited we'd be back so soon.
Over the course of 2007, Heather, Jed & Caitlin had to bow out of the trip for various reasons. Since we'd promised my grandparents, Jeff & I decided to forge ahead and invite my mom along. She was agreeable to going. At some point, we realized it was no longer going to work for the Jeff, Jacob & I to stay with my grandparents in their small 2 BR house. So, we decided to rent a house for all of us to stay at. Might as well get one with a pool too! So the trip became about spending time with my grandparents and for my grandparents to spend time with Jacob. Disney ended up being the secondary reason for the trip. I found the right house, then delayed in booking and missed out on staying there for the first two days of our trip, so we booked the Hilton. There!
Back to Epcot on Monday, Dec 10!
So, after the Epcot Character Spot, we wandered around aimlessly some more. At this point, I remember thinking Jacob felt like he was starting to run a fever, poor baby. He was also having a lot of nasal drainage. He was acting okay though. We went to check out Land of the Living Seas - he loved the aquariums and we had the place just about to ourselves, so we let him roam and we followed him around. He was so funny. Finding Nemo was broken, so we couldn't ride it. : ( We went over to Fig's Journey into the Imagination and we did ride that, but Jacob was not much interested. He just wanted to run free! He did not like being held or cooped up on a ride. He was okay however in his stroller! Thank goodness for that. We went back and Nemo was still broken. Jacob seemed to be fading, so we headed out of the park. You'll see the pictures of him slumped over the front of the stroller. Little Mr. Independant refused to lay back and sleep in a comfortable position and decided that leaning forward was better. He slept that way on the entire stroll to the car. We got him loaded into the car, and our plan was to head back to the hotel, load up the car with our stuff, check out and then go back to Epcot to kill time until 4 pm when we could check into the house.
So we did. And of course, like previous days, Jacob fell asleep immediately in the car. We were able to keep him sleeping in the car while we stopped at a beach type shop and I ran in and tried on a few swim suits and bought one. Then I ran into Qdoba and picked up lunch for Jeff & I. Jacob still sleeping in the car seat. By the way, we bought a Cosco Scenera cheap car seat for $50 for the trip - it's only 9 lbs, easy to install, etc, and apparently, Jacob found it very comfortable for sleeping! So, we headed back to the Hilton, ate our lunch, tried to get Jacob to nap, but he refused. We finally got checked out by about 1 pm and headed back over to Epcot. When we got back, Finding Nemo was finally open. We attempted to get in line and Jacob did not want to be held through the line. He wanted to walk. Walking was still novel to him, he'd only been doing it about 2 months! The problem was he also didn't want to hold our hands though. We waited through the line hoping he'd cooperate, but he refused, so we jumped out of the line at the last minute. After strolling around, he seemed happy & in a good mood. We gave it another shot. We got back in line for Nemo. He was okay through 90% of the line and did not really freak out until we actually got into our clam-mobile. Then, he threw a fit through the entire ride and wanted to sit on the floor of the clam-mobile. Jeff and I decided that would be the last ride we tried to take him on! We loaded him back up into the stroller, and he was fine. We decided to take a spin around the Worlds of Epcot. First up, Mexico. Jeff and I split a frozen margarita. Oh how have we missed this delicious conconction at Epcot all these trips! It was wonderful!!! We completed our tour of the worlds and it was finally about 3:45 p.m. so off to our house - Shrek's Hideout - we headed!
The trip was originally hatched in January 2007, when Jacob was but 5 months old. My friend Heather, is a huge Disney fan, and we've always dreamed of taking a trip together. Disney was having a sale for specific dates in 2007 that included 40% off room rates. Some dates were in December, and I had not been at Christmas since I was a kid. Heather's daughter, Caitlin, is exactly 9 months older than Jacob, so Caitlin was going to be 2 and Jacob 16 months. So the original reservation was to go with our friends in December 2007. In February 2007, we flew to Florida to take Jacob to visit my grandparents who are unable to travel to NC. They just loved him to pieces and since we had a trip to Disney planned for December, we told them we'd see them in 11 months, and they were excited we'd be back so soon.
Over the course of 2007, Heather, Jed & Caitlin had to bow out of the trip for various reasons. Since we'd promised my grandparents, Jeff & I decided to forge ahead and invite my mom along. She was agreeable to going. At some point, we realized it was no longer going to work for the Jeff, Jacob & I to stay with my grandparents in their small 2 BR house. So, we decided to rent a house for all of us to stay at. Might as well get one with a pool too! So the trip became about spending time with my grandparents and for my grandparents to spend time with Jacob. Disney ended up being the secondary reason for the trip. I found the right house, then delayed in booking and missed out on staying there for the first two days of our trip, so we booked the Hilton. There!
Back to Epcot on Monday, Dec 10!
So, after the Epcot Character Spot, we wandered around aimlessly some more. At this point, I remember thinking Jacob felt like he was starting to run a fever, poor baby. He was also having a lot of nasal drainage. He was acting okay though. We went to check out Land of the Living Seas - he loved the aquariums and we had the place just about to ourselves, so we let him roam and we followed him around. He was so funny. Finding Nemo was broken, so we couldn't ride it. : ( We went over to Fig's Journey into the Imagination and we did ride that, but Jacob was not much interested. He just wanted to run free! He did not like being held or cooped up on a ride. He was okay however in his stroller! Thank goodness for that. We went back and Nemo was still broken. Jacob seemed to be fading, so we headed out of the park. You'll see the pictures of him slumped over the front of the stroller. Little Mr. Independant refused to lay back and sleep in a comfortable position and decided that leaning forward was better. He slept that way on the entire stroll to the car. We got him loaded into the car, and our plan was to head back to the hotel, load up the car with our stuff, check out and then go back to Epcot to kill time until 4 pm when we could check into the house.
So we did. And of course, like previous days, Jacob fell asleep immediately in the car. We were able to keep him sleeping in the car while we stopped at a beach type shop and I ran in and tried on a few swim suits and bought one. Then I ran into Qdoba and picked up lunch for Jeff & I. Jacob still sleeping in the car seat. By the way, we bought a Cosco Scenera cheap car seat for $50 for the trip - it's only 9 lbs, easy to install, etc, and apparently, Jacob found it very comfortable for sleeping! So, we headed back to the Hilton, ate our lunch, tried to get Jacob to nap, but he refused. We finally got checked out by about 1 pm and headed back over to Epcot. When we got back, Finding Nemo was finally open. We attempted to get in line and Jacob did not want to be held through the line. He wanted to walk. Walking was still novel to him, he'd only been doing it about 2 months! The problem was he also didn't want to hold our hands though. We waited through the line hoping he'd cooperate, but he refused, so we jumped out of the line at the last minute. After strolling around, he seemed happy & in a good mood. We gave it another shot. We got back in line for Nemo. He was okay through 90% of the line and did not really freak out until we actually got into our clam-mobile. Then, he threw a fit through the entire ride and wanted to sit on the floor of the clam-mobile. Jeff and I decided that would be the last ride we tried to take him on! We loaded him back up into the stroller, and he was fine. We decided to take a spin around the Worlds of Epcot. First up, Mexico. Jeff and I split a frozen margarita. Oh how have we missed this delicious conconction at Epcot all these trips! It was wonderful!!! We completed our tour of the worlds and it was finally about 3:45 p.m. so off to our house - Shrek's Hideout - we headed!
Subscribe to:
Posts (Atom)
