aym4Him
DIS Veteran
- Joined
- May 2, 2012
- Messages
- 587
Hi, everyone.
My son, Ethan, has been granted a wish and we are heading to Disney World! This will be his first time and my hubby's first (his parents are joining us on their own dime- it will be their first time, too). I have been 3 times, but the last time was in 1993. It's been a while! We just got our dates and we will be there Nov 10-16th.
I'm very thankful to find you guys and all this information! I am feeling quite overwhelmed, though. I am not a planner by nature (much to my husband's chagrin) but am more of a fly-by-the-seat-of-my-pants-and-see-what's-gonna happen kind of girl.
A little about us. We are a family of 3 (4, counting our "firstborn" son, our Mini Schnauzer, Giggs). I'm Amy and I'm married to Dillon and Ethan is our little super hero. He's 3 and has had two open heart surgeries (with at least one more to go). At 5 days old, he was diagnosed with Transposition of the Great Arteries and a Ventricular Septal Defect. He had his first OHS at 9 days old to put his arteries (arterial switch) back where they were supposed to go and to have the hole in his heart patched- thankfully, the operation went very smoothly. He had some hiccups in recovery (collapsed lung, feeding issues, etc) but was able to come home after a month.
During one of his routine followup visits with his cardiologist, an issue was discovered about a month and a half after he was discharged. In 5% of cases, scar tissue can develop from all the suturing required to re-attach his arteries to (what should have been) their native valves on the proper ventricles. He was one of the "lucky" 5% and had developed narrowing in his pulmonary artery and valve due to this. After an unsuccessful heart cath to try and widen things up, he underwent his 2nd OHS at 4 months old. It was successful but he will need his pulmonary valve replaced at some time in the future b/c he will outgrow the one he was born with due to the synthetic patch used to widen it.
For all intents and purposes, he is a typical 3 year old boy. In fact, he has given us his first non-heart emergency issue just this week! He swallowed a ball bearing (the size of a small marble) and was pretty proud to show off the xray to his teachers and friends at school and church. It successfully exited his system within a 24 hour period, so we are thankful.
Anyway, that's our story. Ethan has his annual cardiology check up on May 15th so prayers that all is well are appreciated! I'm so paranoid that something will go awry now that we have our dates for Disney! (Because, that's just how us Durhams roll!!!
)
You can read more about Ethan here
What should I be doing now, other than feeling giddy and a bit overwhelmed? Hehe. We definitely will be buying MVMCP tickets for all of us. How soon do we need to do that? What about ADRs?
Thank you thank you thank you!!
My son, Ethan, has been granted a wish and we are heading to Disney World! This will be his first time and my hubby's first (his parents are joining us on their own dime- it will be their first time, too). I have been 3 times, but the last time was in 1993. It's been a while! We just got our dates and we will be there Nov 10-16th.
I'm very thankful to find you guys and all this information! I am feeling quite overwhelmed, though. I am not a planner by nature (much to my husband's chagrin) but am more of a fly-by-the-seat-of-my-pants-and-see-what's-gonna happen kind of girl.
A little about us. We are a family of 3 (4, counting our "firstborn" son, our Mini Schnauzer, Giggs). I'm Amy and I'm married to Dillon and Ethan is our little super hero. He's 3 and has had two open heart surgeries (with at least one more to go). At 5 days old, he was diagnosed with Transposition of the Great Arteries and a Ventricular Septal Defect. He had his first OHS at 9 days old to put his arteries (arterial switch) back where they were supposed to go and to have the hole in his heart patched- thankfully, the operation went very smoothly. He had some hiccups in recovery (collapsed lung, feeding issues, etc) but was able to come home after a month.
During one of his routine followup visits with his cardiologist, an issue was discovered about a month and a half after he was discharged. In 5% of cases, scar tissue can develop from all the suturing required to re-attach his arteries to (what should have been) their native valves on the proper ventricles. He was one of the "lucky" 5% and had developed narrowing in his pulmonary artery and valve due to this. After an unsuccessful heart cath to try and widen things up, he underwent his 2nd OHS at 4 months old. It was successful but he will need his pulmonary valve replaced at some time in the future b/c he will outgrow the one he was born with due to the synthetic patch used to widen it.
For all intents and purposes, he is a typical 3 year old boy. In fact, he has given us his first non-heart emergency issue just this week! He swallowed a ball bearing (the size of a small marble) and was pretty proud to show off the xray to his teachers and friends at school and church. It successfully exited his system within a 24 hour period, so we are thankful.
Anyway, that's our story. Ethan has his annual cardiology check up on May 15th so prayers that all is well are appreciated! I'm so paranoid that something will go awry now that we have our dates for Disney! (Because, that's just how us Durhams roll!!!

You can read more about Ethan here
What should I be doing now, other than feeling giddy and a bit overwhelmed? Hehe. We definitely will be buying MVMCP tickets for all of us. How soon do we need to do that? What about ADRs?
Thank you thank you thank you!!