Lilly Black Congratulations, Aidan! that's awesome news! You are doing great.... you inspire all of us. Keep well....have a great year in school!
Kimberly Nuttle Thanks everyone! Aidan loves reading these comments. :-) Of course, he's also very happy that it's now the weekend and he gets two days off to rest!! LOL (as we all do!)
Lilly Black Aidan, this is my second heart surgery and I am doing great.....even being a lot older than you. I am 63....64 in a few days! it's an amazing journey and from ... Read more
Lilly Black Aidan, this is my second heart surgery and I am doing great.....even being a lot older than you. I am 63....64 in a few days! it's an amazing journey and from reading how well you recovered, you will continue to heal and live a 'normal', happy life as you deserve. You are brave and I'm so glad to have met you. My son is 34 years old and he was with me when I had my second surgery. Having a son is the best thing that happened in my life and I'm sure your mom feels the same :o) enjoy your weekend!
Mary Myers Enjoy your time in 3rd grade. Have fun and keep on being so awesome. Love your heart sis Mia
Back to School!
Journal posted on September 17, 2015
Aidan had his 2 week post-op check up last Thursday and his Doctor said that he is doing really well! He told Aidan that he could go back to school in another week. (Really that is more because of trying to protect his chest from possible accidental injury because there are over 400 kids in his school and so sometimes it's a bit crowded at various times of the day.) Aidan was so bored though, that he almost begged us to let him go to school today, so - today was Aidan's first day of Third Grade! He made it thru the entire day, which is great - but it did tire him out quite a bit.
We also got the good news that he only needs blood draws once a week now, it seems they are getting his coumadin levels and dosage figured out. He is really really happy to only have to go do that once per week!
Hope everyone is having a terrific week -- TGIF (soon)!
Jean Raber Hi, Kim. Hope you are getting the kind of support from Aidan's school that we got from our son's during two or three more minor crises. Bless those teachers ... Read more
Jean Raber Hi, Kim. Hope you are getting the kind of support from Aidan's school that we got from our son's during two or three more minor crises. Bless those teachers for managing to wrangle all those squirmy kids, keep them safe, and actually teach them stuff. Best to your family!
Kimberly Nuttle Jean, Thanks - his teachers and administrator have been great! They have been sending homework home with his twin brother, and we've been working on it. Will ... Read more
Kimberly Nuttle Jean, Thanks - his teachers and administrator have been great! They have been sending homework home with his twin brother, and we've been working on it. Will be doing several pages this weekend to catch up. (I'm always amazed at the amount of homework kids bring home in elementary school.) Saw the principal today and scheduling his POC review for next week (Plan of Care). I'll have to update it with the info about his new valve, his coumadin, and now allergy info (we found out he's allergic to muscle relaxants). I ordered him a medical alert bracelet made out of paracord off of etsy, and he picked out the colors himself. It arrived today, and he was anxious to get it on. He's taking this very seriuosly and his recovery as well. :-)
Kenny Knox Wow, Aidan is a champ! Good for him (and you) on his positive approach! I hope he has a great school year!
Mary Myers Aidan, you are an amazing young man. You will be able to do many things in your life! Go enjoy your life! Big healing hugs!!
Meredith Bray I'll tell you what, Aidan. getting back in the pool after my operation was AMAZING. It felt so good to just float. I took a noodle with me just in case anything ... Read more
Meredith Bray I'll tell you what, Aidan. getting back in the pool after my operation was AMAZING. It felt so good to just float. I took a noodle with me just in case anything hurt, and used to to stretch a little. but simply being back in the water again was the BEST part of my recovery. Have a great life!
Mrs Bray, the bus driver from Florida
Kimberly Nuttle Thanks Mary and Mrs. Bray - he can't wait to go swimming. Here in MI the weather will be cooling off so we'll be using the pool at the local high school. It'll ... Read more
Kimberly Nuttle Thanks Mary and Mrs. Bray - he can't wait to go swimming. Here in MI the weather will be cooling off so we'll be using the pool at the local high school. It'll be several long months before we can swim outside again.
Aidan, riding the People Mover in the D, the night before his surgery.
Jeff V. Kimberly - My 19 year old daughter, Olivia, had a St. Jude mitral valve installed at the age of 8 at the Cleveland Clinic. Her adjustment to living on Coumadin ... Read more
Jeff V. Kimberly - My 19 year old daughter, Olivia, had a St. Jude mitral valve installed at the age of 8 at the Cleveland Clinic. Her adjustment to living on Coumadin has been relatively seamless. Once Aidan's INR levels get dialed in, it will become simply a normal routine in your lives. Olivia has thrived. She just spent the last year living in Germany on foreign exchange. She was home for one month and then off to DC for college. She self checks her INR using a home monitoring system by Alere. Olivia was a great inspiration for me, like so many others on HVS.com, as I had mitral valve repair this past Dec. and am doing great. Check out my journal to see Olivia and let me know if you have any questions...! Best of luck to you and Aidan. I expect you will be amazed at how quickly Aidan rebounds from this experience!
Tammy Pilcher What a brave young man! So happy he has his surgery behind him now. God bless y'all!
Rita Savelis Kids are great patients. Aidan is wonderful.
Goodbye Hospital, Hello Home!
Journal posted on September 2, 2015
Well, post-op day seven and the doctors finally released Aidan so that he could go home! Aidan (and all of us) were so happy to hear that we could finally get home. We came home yesterday (Tuesday), and Aidan had his first blood draw this morning to check his INR levels for his Coumadin. He is walking a little more each day, and today, he even went to school to meet his teacher for third grade. Even though he'll miss the first two weeks of school, and it was a LOT of walking for him, it was good for him to see some of his friends, see his new classroom, and meet his teacher. A little stronger each day and he'll be back to his old self, but able to participate more in his favorite game - dodge ball!
Aidan's surgery was exactly 1 week ago today. We decided to go with a St. Jude's Mechanical valve in his Aortic valve. Surgery was one week ago, and Aidan is doing great. We've had a few bumps this past week, with fluid around his left lung causing it to collapse on the bottom portion. He's been moving around, coughing well, using his spirometer and getting rid of the excess fluid. His chest tube, central line and ART line are all out. We are are still on the heparin trying to figure out his dosage (and stabilize) for his Coumadin. He has been up and out of bed walking around the past three days and is extremeley bored. We are crossing our fingers that we'll be able to head home tomorrow.
Kenny Knox Congratulations Aidan! I hope for a speedy recovery!
Tammy Pilcher Great news! So happy for Aidan and family! God bless!
Jean Raber Anybody with kids has to to praying for your family and Aidan. My kid was laid up about the same age after a much lesser surgery. If he's really bored, show ... Read more
Jean Raber Anybody with kids has to to praying for your family and Aidan. My kid was laid up about the same age after a much lesser surgery. If he's really bored, show him how to blow up some marshmallows in the microwave on graham crackers. Discuss why the marshmallows expand when the air heats them up and why they eventually collapse. Then eat. Or watch this YouTube about a car that runs on Mentos and Coke Zero (it's an educational exploration of the principles of propulsion). Then have him figure out how much Menthos and Coke you'd need to travel 250,000 miles to the moon. Write me if you need more ideas!
Watch this in 3D at http://www.youtube.com/watch?v=YuxqPuhLBZg Driver on closed track. Don't try this without professional help. Want to see this video in 3-...
Kimberly Nuttle Jean Raber - I will definitely show this video to Aidan. He loves stuff like this and has wheels constantly turning in his head. He asks thousands of questions ... Read more
Kimberly Nuttle Jean Raber - I will definitely show this video to Aidan. He loves stuff like this and has wheels constantly turning in his head. He asks thousands of questions and retains information, links information together to draw conclusions far better than most adults even. Plus, he is super bored right now and wants to get home!
Kimberly Nuttle Thanks Kenny and Tammy. Kenny - sorry I did not reply to your guest note. Between the heart cath and the news we were not expecting, and all the flurry of ... Read more
Kimberly Nuttle Thanks Kenny and Tammy. Kenny - sorry I did not reply to your guest note. Between the heart cath and the news we were not expecting, and all the flurry of activity, I did not have much of a chance to be online. His Cath went good, except that he broke out in hives part way thru the cath procedure. We were not aware of any allergies to any medications, as he did not have this reaction 2 yrs ago during that heart cath procedure. He had hives all over his entire body. This led to allergy testing, and a lot of investigation, meetings with the head of anesthesiology at the hospital, etc. to figure out that it was either the rocuronium or fentanyl or the combo of the two together. We switched to a different drug in place of rocurionum for the open heart valve replacement, and still - toward the end of surgery, he began to break out in hives (not nearly as badly) which leads me to believe it was more the fetanyl., as they had given him another dose of it toward the end of the surgery.
Jean Raber Well, that Coke and Mento thing should be right up his alley! I bet if you take him to Home Depot and give him $20 for PVC pipe, he'll be making his own rig ... Read more
Jean Raber Well, that Coke and Mento thing should be right up his alley! I bet if you take him to Home Depot and give him $20 for PVC pipe, he'll be making his own rig he can power with a variety of alternative fuels (vinegar and baking soda does interesting things, too). He looks like a great kid, Kimberly, and you sound like a great mom!
Mary K Sending prayer for the little guy. May he heal perfectly.
Rita Savelis Glad Aidan is bored - that's a good sign! When you're bored, it's time to leave hospital. Yeah! It can take awhile (months) to stabilize and figure out dosages ... Read more
Rita Savelis Glad Aidan is bored - that's a good sign! When you're bored, it's time to leave hospital. Yeah! It can take awhile (months) to stabilize and figure out dosages on coumadin. Just bear with it. I think the liver takes time to process it all. The blood tests can get boring after awhile, but it all does fall into place eventually.
Naomi Ivker Great to see. Hope he gets to head home soon!
Autumn Griffin What a beautiful picture! He is an adorable boy. I hope he feels better soon. I think and hope for Aidan that kids seem to recover from these things quicker ... Read more
Autumn Griffin What a beautiful picture! He is an adorable boy. I hope he feels better soon. I think and hope for Aidan that kids seem to recover from these things quicker than adults. My niece had a heart transplant at ages 2 and 13 and she did remarkablely well. More pictures please when you can.
This is our journey. We share it with our son. We were blessed to have twin boys in 2006. Our younger twin (referred to by our doctors as baby B), was taken immediately to the NICU, due to fluid in his lungs. While there, they discovered that he has Aortic Stenosis.
Total shock. I had difficulty understanding how my beautiful little baby could be anything but perfect. With just having given birth via C-section to 2 babies, and then hearing and trying to understand this news, it was overwhelming.
At 8 wks old, our son had a balloon catherization, because his valve had begun to close up.
He is now almost 9 years old. He's had yearly check-ups with his Cardiologist and has been doing well. This last year, we've noticed a change. In addition to several boughts of bronchitis through the cold/flu season, he also had strep twice. He's been having more difficulty keeping up with kids doing any sort of aeorbic activity, tires out much quicker than he did before.
Yesterday, at his annual check-up appointment, we learned that his valve has become worse, and he needs to have heart catherization on Monday, and then will need surgery to replace his aortic valve.
We are at this point thinking that we will opt for the Ross procedure. We have several questions for the cardiologist and have been writing them down.
One big question is, what is the recouperation time? Is it open heart surgery?
Kenny Knox Hi Kim. Your story reminds me so much of my childhood. I too am a twin and was diagnosed very quickly with a congenital defect of the aorta and aortic stenosis. ... Read more
Kenny Knox Hi Kim. Your story reminds me so much of my childhood. I too am a twin and was diagnosed very quickly with a congenital defect of the aorta and aortic stenosis. I had my first surgery when I was 8 and then had the Ross procedure as a teen.
My Ross was open heart (I'm not familiar if they do Ross less invasive). I recovered well and was back on the basketball team the following season. I was able to do everything my twin and friends could do except heavy weight lifting. The replacement aortic valve lasted me 18 years. I just had it replaced but my pulmonary replacement is still doing great!
I'd be glad to answer any additional questions or talk to you about my experiences with heart surgery as a child. You can email me at knox.kc@gmail.com. I hope this info helps!
Clare Auten My middle child just turned nine. I can't imagine going through this with him. Prayers for your whole family. I am glad Kenny will be able to help with his story.
Kimberly Nuttle Kenny, thank you so much! That is very good to hear, that you recovered so well and were able to play basketball the following season. Aidan is a die hard ... Read more
Kimberly Nuttle Kenny, thank you so much! That is very good to hear, that you recovered so well and were able to play basketball the following season. Aidan is a die hard dodge ball fan, he loves to play at school. He's not that great at it, but sure does try hard. He's been having trouble even going up the stairs here at the house now. He is an incredibly smart kid, and thought most parents will say that as we have bragging rights, Aidan has been tested and is in the gifted range. Basically, he is a walking encyclopedia, retains information like you wouldn't believe. Yesterday, he asked about what will happen after his cath procedure on monday, what the next surgery will be like. I explained it to him and then told him that he'll then be able to run more, ride his bike more, play soccer, and be just like his friends - and he liked that. He then went and looked up aortic valve procedures on google and watched a video on it (I was working in the other room).
Do you remember how long you had to stay in the hospital, and how long your totaly recouperation time was? We are nearing the beginning of school, and he's worried about missing school, it's been a long summer w/out seeing too many friends. He's the type of kid that needs information so he can prepare himself. Usually I give it in small doses so as not to overwhelm him.
Kenny Knox Hey Kim- Aidan already seems ahead of the game with the research! If he hasn't had a catherization yet, they are a breeze and he won'the feel a thing.
Kenny Knox Hey Kim- Aidan already seems ahead of the game with the research! If he hasn't had a catherization yet, they are a breeze and he won'the feel a thing.
I was in the hospital for roughly 8 days after the Ross. I had the procedure in mid July and was able to return to school when school started in late August. The recovery wasn't hard but took some time to gain energy back. Things like coughing, sneezing, laughing were the hardest. It was about 3 months before I was engaging in more physical activity however I was walking, going places, and doing passive things with friends after 6 weeks. I hope this helps :)
On a side note, I think it's great that you'received on here for him. My mom was at my side 100% of the time during my childhood surgeries and I'll never forget it. Aidan is very lucky to have you! I wish him and your family the best!
Tammy Pilcher Hi Kimberly, welcome to the site. I'm so thankful Kenny can help you with his experiences. I'll be praying for y'all. God bless!
Bob M I pray for Aidan to have a textbook procedure and an uneventful recovery. It will be a new day for Aidan with a fixed heart. God bless and rise up!
Rita Savelis I say give Aidan all the info he asks for. I can see him not wanting to miss school because he loves it. I had childhood cancer and never missed school even ... Read more
Rita Savelis I say give Aidan all the info he asks for. I can see him not wanting to miss school because he loves it. I had childhood cancer and never missed school even with chemo, but that was sort of silly wasn't it? I would have liked everyone to talk to me like an adult and tell me everything. Maybe let all the other kids know.
I am from: waterford
My surgery date is: August 24, 2015
