3 days after we got back from Boston, we had a routine cardiology appointment with Dr. Nugent,
and we were ready to discuss everything we learned while we were
there. To say the appointment didn't go well is a gigantic
understatement. We love Dr. Nugent...like
he's part of our family love him. But we showed up on the wrong end of
the ice storm....his 2 weeks in the ICU...one of his patients took off
to Boston for a 2nd opinion...and who knows what else we didn't even
know about? BAD....as in he used phrases like "ending up with a dead
3-year old" and I remember crying for most of the appointment. We
walked out of the hospital in shock, feeling very much like our support
system from the past 2 years had evaporated. And I know what you're
thinking...what did you expect when you decided to get the 2nd opinion?
This business of raising a critically/chronically ill child is not
about making friends with your doctors or loyalty to a medical
facility...even if they've given you the most precious gift anyone can
imagine--more time or any time with your child. It's about making sure
your child always has access to the best care possible, and the latest
information/technology/surgical techniques/etc regarding his/her medical
condition(s). In Kaleb's case, we need a hospital that is most
experienced in Heterotaxy Syndrome, an amazing cardio-thoracic
surgeon, and a fantastic cardiac-specific ICU. Although we're having a
really hard time with it, those are the ONLY things that matter in this
decision.
A week after the disastrous cardiology appointment, we met with Dr. Forbess
to go over the results of the MRI/3-D echo from Boston and get his
opinion on the best way to proceed with Kaleb's care. Though he chose
not to review any of the new scans/reports, he spent a lot of time with
us, and was mostly very kind in his approach. We are especially
appreciative of his time because there was an emergency surgery in
progress, and he was waiting for a page to head to the OR. Although we
hear differently from Nugent all the time, Dr. Forbess' approach to Kaleb's surgical future is very conservative. He not only recommended the Fontan(single-ventricle
option), he went as far as to say he sees a heart transplant in Kaleb's
future no matter what surgical approach we take. He spent a great deal
of time reminding us how far Kaleb's come, and seemed to suggest that
we should just be grateful he's still alive and is a Fontan
candidate. Believe me...we are incredibly grateful on both counts.
But at what point in your child's medical journey do you just
say....okay, let's just "cut our losses" and ignore the possibility that
there could be another way? He was very careful to say a 2-ventricle
repair was possible...just not, in his opinion, the best answer for
Kaleb. He gave us a much-too-rosy picture of life post-Fontan,
and even seemed to dismiss the idea of liver complications due to the
single-ventricle circulation. He encouraged us to meet with an adult
cardiologist, like his wife, who treats adult Fontans
to see how well they're doing. It sounded good. It didn't feel
right. We were also very concerned that Dallas wants to wait until May
or June to do the surgery. Another 4 months with oxygen saturation in
the mid-70s at rest(mid-60s during activity), activity level way down,
and vomiting way up. We left the meeting wanting very much to stay in
Dallas, but just couldn't shake the uneasy feeling of that reality.
The following week, probably the 3rd week of January, we finally got to speak with Dr. Del Nido, the surgeon from Boston whose opinion we had waited so long to hear. He sounded COMPLETELY different than he looks(like he's in his 20s and he's not!), was incredibly kind, and spent a bit more than an hour on the phone with us. It absolutely wasn't the same as getting to see him in person, but we are incredibly grateful that he spent the time making sure that (at that time) we completely understood our options for Kaleb and his opinion about the surgery. He started by telling us he believes Kaleb should have the bi-ventricular(2 ventricle) repair, and he detailed every step he would have to take surgically to accomplish this. It's such an enormous task, it's hard to imagine it can all be completed in one surgery. He'd be creating a septum(the wall down the middle of the heart), separating a functioning valve into 2, re-routing major areas of blood flow, creating anatomy Kaleb wasn't born with from cadaver tissue,and taking down surgical work that's already been done. In the end, Kaleb would have a beautifully unique, 4-chamber, pumping heart, and oxygen saturation of 100%.
It sounds incredible, and it is. They are doing this so successfully in Boston, they recently appointed a director to the newly created Complex Bi-ventricular Repair Program. But Kaleb is much more complex than most of the kids Boston repairs through that program. By his own admission, Dr Del Nido only sees 6-8 kids anywhere nearly as complex as Kaleb in a year. This will be a long surgery, with about 2 hours(minimum) on the bypass machine(with his heart stopped). Kaleb has Heterotaxy Syndrome, which makes the way he responds to his new circulation/repaired heart entirely unpredictable. The valves that he essentially creates from the one Kaleb has now might leak, and eventually have to be repaired/replaced. The nerve pathway inside the heart that controls conductivity(the part that keeps your heart beating regularly) could be irreparably harmed, and a pacemaker might be necessary. I could go on, but I know you get the idea. It's a terrifyingly huge open-heart surgery, and the risks are many. And if you're going to let anyone perform it, you don't want your child to be on anyone else's table but Pedro del Nido. But when I really think about everything that has to go perfectly to achieve success, I can't for the life of me figure out how to consent to the attempt.
That was several weeks ago, and we have seen Dr. Nugent for 2 Cardio appointments, a coffee, and a Mended Little Hearts event since then. Thankfully, we have recovered from the December appointment, and we truly feel that he is with us and being as helpful as possible. We have spoken to Dr. Marx(the Boston cardiologist) at least once more, sent follow-up questions to Dr. Del Nido that were answered, and spent countless hours discussing information that we sometimes feel seriously under-qualified to process. I have also had the help of some very brave heart moms, that I'm so proud to call new friends and supporters. And, of course, we have the most supportive families anyone could ask for. This is, by far, the hardest decision we've ever had to make....and multiple times a day, I change my mind.
We're going to Boston next Thursday, February 27th. Kaleb has a heart cath March 3rd and surgery March 5th, with Dr. Del Nido. We're not entirely sure about the surgery Kaleb will have until the Cath confirms that he's a better candidate for one or the other. I've begun praying not for a specific surgery, but for the BEST SURGERY FOR KALEB...and I know God already knows which one that is. Please pray with us, send us positive thoughts and energy, and continue loving our boy. We need it all now more than ever.
One day, one hour, one minute at a time,
Jenifer
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The following week, probably the 3rd week of January, we finally got to speak with Dr. Del Nido, the surgeon from Boston whose opinion we had waited so long to hear. He sounded COMPLETELY different than he looks(like he's in his 20s and he's not!), was incredibly kind, and spent a bit more than an hour on the phone with us. It absolutely wasn't the same as getting to see him in person, but we are incredibly grateful that he spent the time making sure that (at that time) we completely understood our options for Kaleb and his opinion about the surgery. He started by telling us he believes Kaleb should have the bi-ventricular(2 ventricle) repair, and he detailed every step he would have to take surgically to accomplish this. It's such an enormous task, it's hard to imagine it can all be completed in one surgery. He'd be creating a septum(the wall down the middle of the heart), separating a functioning valve into 2, re-routing major areas of blood flow, creating anatomy Kaleb wasn't born with from cadaver tissue,and taking down surgical work that's already been done. In the end, Kaleb would have a beautifully unique, 4-chamber, pumping heart, and oxygen saturation of 100%.
It sounds incredible, and it is. They are doing this so successfully in Boston, they recently appointed a director to the newly created Complex Bi-ventricular Repair Program. But Kaleb is much more complex than most of the kids Boston repairs through that program. By his own admission, Dr Del Nido only sees 6-8 kids anywhere nearly as complex as Kaleb in a year. This will be a long surgery, with about 2 hours(minimum) on the bypass machine(with his heart stopped). Kaleb has Heterotaxy Syndrome, which makes the way he responds to his new circulation/repaired heart entirely unpredictable. The valves that he essentially creates from the one Kaleb has now might leak, and eventually have to be repaired/replaced. The nerve pathway inside the heart that controls conductivity(the part that keeps your heart beating regularly) could be irreparably harmed, and a pacemaker might be necessary. I could go on, but I know you get the idea. It's a terrifyingly huge open-heart surgery, and the risks are many. And if you're going to let anyone perform it, you don't want your child to be on anyone else's table but Pedro del Nido. But when I really think about everything that has to go perfectly to achieve success, I can't for the life of me figure out how to consent to the attempt.
That was several weeks ago, and we have seen Dr. Nugent for 2 Cardio appointments, a coffee, and a Mended Little Hearts event since then. Thankfully, we have recovered from the December appointment, and we truly feel that he is with us and being as helpful as possible. We have spoken to Dr. Marx(the Boston cardiologist) at least once more, sent follow-up questions to Dr. Del Nido that were answered, and spent countless hours discussing information that we sometimes feel seriously under-qualified to process. I have also had the help of some very brave heart moms, that I'm so proud to call new friends and supporters. And, of course, we have the most supportive families anyone could ask for. This is, by far, the hardest decision we've ever had to make....and multiple times a day, I change my mind.
We're going to Boston next Thursday, February 27th. Kaleb has a heart cath March 3rd and surgery March 5th, with Dr. Del Nido. We're not entirely sure about the surgery Kaleb will have until the Cath confirms that he's a better candidate for one or the other. I've begun praying not for a specific surgery, but for the BEST SURGERY FOR KALEB...and I know God already knows which one that is. Please pray with us, send us positive thoughts and energy, and continue loving our boy. We need it all now more than ever.
One day, one hour, one minute at a time,
Jenifer
How far we've come:
This
picture was taken by my mom on the morning we prepared to say good-bye
to Kaleb. It was 24 hours after he was born, and we were just minutes
from meeting Dr. Nugent and hearing about the possibility of Kaleb's
miraculous Cath intervention.
April 2012-Kaleb's first open-heart surgery
They told us to prepare for the worst, but God had bigger plans.
August 2012-Kaleb's 2nd open-heart surgery The Glenn
Discharged just before his 1st birthday
Sept 2012-LADDs to fix mal-rotated intestines and G-tube acquired
Being at home for several months agreed with me!
GI defects discovered, tube converted to GJ, and many nights at Children's
We made the most of that summer-swim lessons, family, and fun!
1st flight to Grandpa & Nana's-so much fun!
1st time in Grandpa's pool playing with his cousins-so much fun!
Flight home straight to Children's-not so much fun...
Beach trip 1 month later(still can't believe we were that brave so soon after his transport!)
Pure JOY!!
Our MIRACLE boy turned 2!!
5 weeks at Baylor Inpatient Feeding Program starting to eat and making friends!
Super big ICE fun at Mimi & PawPaw's
The Boston Adventure begins!
Christmas morning at Mimi & PawPaw's was extra special this year!
Valentine's Day fun in the leaves
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