Sep 17 marked 5 years since my son had his bicuspid aortic valve and aneurysm repaired. He is now 24. He still has some leakage but things are stable! The ...Read more
Sep 17 marked 5 years since my son had his bicuspid aortic valve and aneurysm repaired. He is now 24. He still has some leakage but things are stable! The black shirt pic is a few weeks before surgery. The rubber ducky shirt is this week from work. Difficult journeys often lead to beautiful destinations.
4 years ago today my then 19 year old son, Sebastian, had his bicuspid aortic valve repaired. Things are still stable with his repair and aneurysm and we ...Read more
4 years ago today my then 19 year old son, Sebastian, had his bicuspid aortic valve repaired. Things are still stable with his repair and aneurysm and we are still thankful for every day of good health.
Klara Čičić Yaaay! Congrats! You are a beautiful family! Wish him many more healthy years...
Rose Madura Glad all is well with Sebastian! Congratulations.
Patsy Stewart Happy Anniversary to Sebastian! What a great update! Stay happy and healthy!~❤️
Kimberly Eisenhut Way to go Sebastian!!! I and all 3 of my children understand what anxiety and depression are like an... Read more
Kimberly Eisenhut Way to go Sebastian!!! I and all 3 of my children understand what anxiety and depression are like and how hard it can be, so you are not alone, and neither are you Jill. Love the update and smiles! Many more to come!!!
Susan Lynn It's great to see all of you!!! Happy 4th Anniversary, Sebastián! Wishing you many, many decade... Read more
Susan Lynn It's great to see all of you!!! Happy 4th Anniversary, Sebastián! Wishing you many, many decades of good health and future celebrations.
We are coming up on the one year anniversary of my son’s BAV valve repair surgery. (For those not familiar with Sebastian he was 19 at the time of surgery. ...Read more
We are coming up on the one year anniversary of my son’s BAV valve repair surgery. (For those not familiar with Sebastian he was 19 at the time of surgery. We had no idea what a bicuspid valve was before he was diagnosed and he was already in congestive heart failure at that time.)
He has been doing pretty well. His heart remodeled nicely (his surgeon’s words) and because he still has some regurgitation (at his 3 month echo his cardiologist says mild to moderate, the surgeon says very mild. His ejection fraction was also at the lower end of normal.) I am nervous for the one year follow up echo. I hope the repair lasts because I don’t want to see him have to go through that again. With the anniversary (Sep 17) coming up I’ve been thinking about it a lot and we had a very tough couple of days at the hospital. I know another surgery is a very real possibility, I just hope that we can get several years in first.
The whole surgery came at us so fast I never really had time to process the whole thing. I had hoped with his age that he would rebound to full health. While he does well we’ve had a hard time finding a job for him. He has a fifty pound weight restriction for life due to the aneurysm and the majority of the jobs in our area are physical factory work. He did find one job that wasn’t so physical but they flipped his hours around a lot and required quite a bit of overtime. Schedule changes and his Metoprolol don’t get along well. He just wants to be independent so he gets discouraged and it’s hard for me not to be able to fix it for him. We’ll get through it because, like the rest of you, he is one tough cookie whose will to live outweighed his fear.
Marie Myers Congrats on his first year anniversary! Hope everything works out for him job-wise.
Valerie Altman 💕🌤️💕it was quite the journey for us wasn't it!! Glad he's doing well you guys are always i ... Read more
Valerie Altman 💕🌤️💕it was quite the journey for us wasn't it!! Glad he's doing well you guys are always in my prayers
Jill Mullikin Hi Valerie!! I think about you quite a bit and have the biggest smile to see your comment!!! I trie ... Read more
Jill Mullikin Hi Valerie!! I think about you quite a bit and have the biggest smile to see your comment!!! I tried to send a card to your hospital for you to get a couple days after your surgery but it was returned. How are you??!!!
Susan Lynn Wow! It's a year already! I wouldn't worry about Sebastian's annual appointment. It sounds like ... Read more
Susan Lynn Wow! It's a year already! I wouldn't worry about Sebastian's annual appointment. It sounds like he's doing well. Wait to see what the surgeon says.
Btw, Sebastian may be eligible for a reasonable accommodation at work under the ADA/ADAAA. It may not be unreasonable for his employer to keep him on a regular schedule. He may want to ask - it can't hurt. Please keep us posted! ❤
LINDA ROBERTS Thanks for the update on Sebastian. Hoping for the best of news for his yearly check up.
Richard Buckley Jill, all the best for you and Sebastian. I recall his story as his surgery was a few days after mine ... Read more
Richard Buckley Jill, all the best for you and Sebastian. I recall his story as his surgery was a few days after mine. I hope he can find a position. Could be take some training for something not requiring so much physical activity? Maybe a career counselor can help?
Rob Sparling Jill. You are strong, so is Bash. Make sure you both continue to pivot, if needed! Find the sunny s ... Read more
Rob Sparling Jill. You are strong, so is Bash. Make sure you both continue to pivot, if needed! Find the sunny side of the street and walk down that side! I am very hopeful that the tests reveal all is as good as can be. But also know you will find a way to aim him in the right direction and support him. Give a man a fish? Or give a man a fishing pole? Training of any sort is good. We all need to keep learning. Lifetime learning is “a thing”! 👍
BAV folks,
Have any of you been tested for Marfan or other connective tissue disorders? Our GP, cardiologist, nor surgeon mentioned anything to us about ...Read more
BAV folks,
Have any of you been tested for Marfan or other connective tissue disorders? Our GP, cardiologist, nor surgeon mentioned anything to us about these disorders and I’m wondering if this is something I should pursue with them. I’m not looking for new health issues for Sebastian but I don’t want to be blindsided again like we were with the aneurysm and severe regurgitation.
Marie Myers Good question. I have read that bicuspid AV and ascending aneurysms show that we are at increased ris ... Read more
Marie Myers Good question. I have read that bicuspid AV and ascending aneurysms show that we are at increased risk for cerebral aneurysms also. My docs did not seem that concerned, but would be interesting to see what other docs say.
Sommer Russell Marie, I asked that question to my cardio and surgeon and he told me no- that I didn't have more of a ... Read more
Sommer Russell Marie, I asked that question to my cardio and surgeon and he told me no- that I didn't have more of a risk than anyone else for cerebral aneurysm, but I think I read differently as well. I really didn't find much comfort in that!
Jill- I think that there are very distinct characteristics that would let them know if you fit the profile of one of those diseases. I have to say, that I have been seriously thinking about taking the 23 and me test. I'm just not sure that I want to know everything!!!
Marie Myers I took the 23 and me test. No info on collagen diseases BAV, or aneurysms.
Bradley Dunn I thought I had Marfans for the past 20 years due to my cardio misdiagnosing me. The only two traits ... Read more
Bradley Dunn I thought I had Marfans for the past 20 years due to my cardio misdiagnosing me. The only two traits I have are a bad valve that is now in a land fill somewhere and I am tall. After surgery they said I didn't have it even though I was never formally tested.
Search for other traits, if he has a few of them - then it might help to get tested though I am not sure what they will do if he is positive.
Jill Mullikin Good point Bradley! If he does have it it probably wouldn’t change much. His valves and repaired ... Read more
Jill Mullikin Good point Bradley! If he does have it it probably wouldn’t change much. His valves and repaired aneurysm will always be monitored anyway. Man, I’ve got to stop being jumpy mom and overthinking EVERYTHING! Deep breath. We’ll continue to be diligent and get anything out of the ordinary with him checked out.
Rob Sparling Jill, get your 💩 together and quit scaring the 💩 outta yourself/us. 🤣
Rob Sparling Jill, get your 💩 together and quit scaring the 💩 outta yourself/us. 🤣
Good to be aware. Looking over the horizon is smart! Tell Sebastian we all say hello!
Jill Mullikin Will do on both counts! He finally found a car he wanted (that Mom could afford) and is working part ... Read more
Jill Mullikin Will do on both counts! He finally found a car he wanted (that Mom could afford) and is working part time. We had talked about him picking a car on the really horrible day in the hospital so it was nice to be able to do that for him. He got an 03 Mitsubishi Eclipse.
Catie B Jill, I hope he loves his car!
I was easily able to rule out Marfan's by going over some specific sc ... Read more
Catie B Jill, I hope he loves his car!
I was easily able to rule out Marfan's by going over some specific screening/diagnostic parameters--listed on marfan.org. Don't know whether that might help set your mind at rest. Otherwise, toss that idea to the side.
Rob Sparling Good deal! So special that you were able to do that! He will always look back on that and smile! I ... Read more
Rob Sparling Good deal! So special that you were able to do that! He will always look back on that and smile! I’ll bet the car memories will be more vivid in the long run than the horrible hospital day! 🤞
Hello all! It's amazing that since Sebastian's surgery on September 17th I have lost count of how many weeks it's been since his BAV and aneurysm repair. ...Read more
Hello all! It's amazing that since Sebastian's surgery on September 17th I have lost count of how many weeks it's been since his BAV and aneurysm repair. His follow up echo 12 weeks post surgery showed a "very mild" regurgitation though his surgeon assured us that was completely normal and nothing to be concerned about. (His cardiologist rated the echo quite differently and I had a week of absolute panic but I have faith in our surgeon and his opinion.) Any heart surgery is a second chance and being able to keep his valve was the right option for him at this stage of his life. Bastian's left ventricle has returned to normal size and his aorta is stable. We are just waiting on the surgeon to review his CT scan one more time to ensure his sternum is stable. He has occasional popping without pain and they want to be sure we aren't dealing with a non union.
Overall, Bash is doing very, very well. He passed his GED and is ready to find a job once we get the all clear from the surgeon. He's still living at home and we haven't seen the kid smile this much in years. He is quite clear that he "is never doing that surgery again" and I hope that can be the case for him or it can at least be put off for many years while the advancements continue.
It's amazing that 6 months ago I had never heard of a bicuspid aortic valve. Looking back I can now see the things we missed. My kids have always spent a lot of time with my parents and have always regularly taken their blood pressure there. Sebastian would get the irregular heartbeat symbol quite often since he was about 8 or 9 but we didn't think much of it. He went to the doctor all the time and no one ever said anything. I just thought the machine was geared for adults and he got that reading because he was a kid. It also turns out his lack of energy wasn't depression and his insomnia wasn't insomnia. Hindsight right? I don't know that it would have made it any better to have known sooner. It would have made it different, but not necessarily better.
This has been an interesting journey for sure and thank you to everyone for all of your kind words and support. He's always going to be a cardiac patient and I'm always going to worry but I know where to find the folks that will talk me off of the ledge!
Thomas Brusstar Thanks for the update! Happy new year for Bash in 2019. Lots of us are glad to have 2018 behind us ... Read more
Thomas Brusstar Thanks for the update! Happy new year for Bash in 2019. Lots of us are glad to have 2018 behind us, but we know our bodies did some amazing healing with the help of our doctors. Maybe because I have a teenage son, Bash’s process and ultimately strength really hit home with me.
Jill Mullikin Debbie, you remember correctly. Ruling out the bicuspid valve I found out I have mild aortic stenosi ... Read more
Jill Mullikin Debbie, you remember correctly. Ruling out the bicuspid valve I found out I have mild aortic stenosis and two mild regurgitations. I’ll do another echo in a year and hope things stay as they are.
Jill Mullikin Hi Thomas! You aren’t that far from us and I remember you hoping your son didn’t get your valves ... Read more
Jill Mullikin Hi Thomas! You aren’t that far from us and I remember you hoping your son didn’t get your valves. I hope that for both of you as well! My dad was right when he said you can deal with a lot more than you think you can! I’ve learned a lot about Bastian and myself during this. I’m a control freak and it was hard to give someone else control. As a parent you just want to fix it but I wasn’t driving. Life is good and I’ve learned to definitely not sweat the small stuff!
Debbie Kelly I accidentally deleted my post, when trying to correct a typo. Will be praying for your stenosis to ... Read more
Debbie Kelly I accidentally deleted my post, when trying to correct a typo. Will be praying for your stenosis to remain mild. You need a break!
Karrie Irby-Williams I also think what if I had know sooner!!! But I wouldn’t have let him live his life without concern ... Read more
Karrie Irby-Williams I also think what if I had know sooner!!! But I wouldn’t have let him live his life without concern and I would have been stressed the whole time.. everything happens for a reason and in his perfect time 😃
Phyllis Petersen Most of us think we're asymptomatic, because the symptoms can be so many other things. I tried for ye ... Read more
Phyllis Petersen Most of us think we're asymptomatic, because the symptoms can be so many other things. I tried for years to find out why I had sudden bouts of fatigue and my doctor knew I had MVP. The important thing is that you did find it and got him to take care of it, so now he gets to really enjoy his life. Congrats to Bash on passing the GED. That can make a big difference in his life choices.
Rita Savelis Thanks for your update and so glad Sebastien is doing well. Someday you may actually forget your son' ... Read more
Rita Savelis Thanks for your update and so glad Sebastien is doing well. Someday you may actually forget your son's surgery date or how many years ago it was (my case - I have to calculate to remember...). xoxo
Sebastian’s surgery was on Sep 17 and he continues to do well. I’m going to call his surgeon on Wednesday to ask but has anyone else still had sternal ...Read more
Sebastian’s surgery was on Sep 17 and he continues to do well. I’m going to call his surgeon on Wednesday to ask but has anyone else still had sternal clicking at the 3 month mark? He had a mini. He doesn’t have any pain with it. He’s not done any cardiac rehab and he hasn’t over exerted himself during recovery. I’m fact, I think he’s been overly cautious. He had a CT with contrast about a month ago and they said everything looked great. Would a CT show problems with his sternum?
Willie Radl Hi Jill I had a mini in April and by 3mo I felt like I was pretty well healed up at the sternum.....m ... Read more
Willie Radl Hi Jill I had a mini in April and by 3mo I felt like I was pretty well healed up at the sternum.....maybe a little itchiness and the bone was still raised a bit but no clicking. I remember the rib pain lasted a while but by 3mo I felt pretty good. I don't think it would hurt to ask about the clicking. Does it happen a lot or only with certain movements? I don't thing the CT scan would show the sternum but I may be wrong on that.
I am greatly saddened today to learn of the untimely passing of the nurse practitioner that first heard Sebastian’s murmur and irregular heartbeat and got ...Read more
I am greatly saddened today to learn of the untimely passing of the nurse practitioner that first heard Sebastian’s murmur and irregular heartbeat and got us on the path to a better and longer life for Sebastian. She was only 34 and I truly feel I owe her for Sebastian’s life. I don’t know what happened but she will be greatly missed.
MARIE PICUN How sad. Prayers for her and her Loved ones
Susan Lynn Jill - I am so sorry to read about your loss. This young woman was clearly taken too soon, but will ... Read more
Susan Lynn Jill - I am so sorry to read about your loss. This young woman was clearly taken too soon, but will always be remembered by you, Sebastian, and the many patients who were recipients of her care. Sincerest sympathy!
Louanna Miller So very sorry. I would be so saddened if my NP passed as she is the one who encouraged a sooner Echo ... Read more
Louanna Miller So very sorry. I would be so saddened if my NP passed as she is the one who encouraged a sooner Echocardiogram than in 2 more years.
Sebastian saw the cardiologist on Monday for a post surgery checkup. This should have been a 2 week visit but his cardiologist was out last week so we were ...Read more
Sebastian saw the cardiologist on Monday for a post surgery checkup. This should have been a 2 week visit but his cardiologist was out last week so we were delayed.
His incision is still healing nicely. One of his four medications was removed (magnesium) and we were instructed to ask the surgeon about two of the other three. He has a little follow up bloodwork next week and an echo was scheduled for December. The cardiologist said see him in a year.
I spoke to the surgeon’s office and he can discontinue the mitigare when his 30 day supply is gone but he should continue the beta blocker and baby aspirin for a bit longer. That brings him down to only 2 pills per day. They’d like to schedule a follow up cat scan. I really hope to see a reduction in the size of his left ventricle.
While we were in the cardiologist’s office I received the call to schedule my biopsy for the following morning. I am happy to report that I received the results today and my abnormal suspicious mammogram turned out to be benign calcification. I am elated that I’m not looking for a breast cancer web page to join.
Some of the insurance EOB’s have started to arrive. We are fortunate that Sebastian is covered on a policy by me and also by his dad. Both policies are through United Healthcare and they still argue over who is the primary provider. His dad’s policy isn’t covering the days in the hospital before the surgery deeming it “medically unnecessary”. I will be appealing that decision as Bash had acute systolic congestive heart failure upon admission. Insurance companies think they rule the world but I’m up for some hoop jumping.
Louanna Miller So great to read about Sebastian’s progress. He’s doing great!!!
Louanna Miller So great to read about Sebastian’s progress. He’s doing great!!!
And, I praise our Lord for your excellent health report. He is an incredible example for others young and older alike.
I have also found you have to look over every EOB and claim. Good for you. You are an incredible mother.
Rita Savelis Always good to hear good news from you, Jill - especially that you don't need a cancer web page to jo ... Read more
Rita Savelis Always good to hear good news from you, Jill - especially that you don't need a cancer web page to join! Happy October to you and Sebastian.
Dan Vechiola Glad to gear Sebastian is doing well. Its great when your caediologist says "see you in a year!"
Rob Sparling Glad to hear all of the above. Patience and stamina for hoop jumping, included! The biopsy results ... Read more
Rob Sparling Glad to hear all of the above. Patience and stamina for hoop jumping, included! The biopsy results are a relief, I’m sure! Keep pushing ahead!
Judy S Fabulous news Jill! So happy for you and Sebastian. Good luck with the hoop jumping—I have a feelin ... Read more
Judy S Fabulous news Jill! So happy for you and Sebastian. Good luck with the hoop jumping—I have a feeling you can “take” them!
Now that the boy is on the mend it was time to get caught up on my own healthcare. I am proud to announce that Sebastian and I only share a birthday and not ...Read more
Now that the boy is on the mend it was time to get caught up on my own healthcare. I am proud to announce that Sebastian and I only share a birthday and not bicuspid aortic valves!
That was the good part. The downside was I have mild aortic stenosis and two other slightly leaky valves that we are going to monitor so a welcome to the waiting room for me.
I wasn’t expecting that report but who is? I also wasn’t expecting an abnormal suspicious mammogram result that now requires biopsy but it is what it is. My optimism is a little tired this year but I’m doing my best to not worry until there’s a confirmation that there is something to worry about.
This year has been a little trying so perhaps a large kiss 2018 good bye New Year’s Eve party will be in order!!
I think I feel a tingle on my forehead. 💩 ☘️ Just keep swimming. Just keep swimming.
Rob Sparling Wow! There aren’t enough emoji’s for all that! Hopefully biopsy result — when it comes — is ... Read more
Rob Sparling Wow! There aren’t enough emoji’s for all that! Hopefully biopsy result — when it comes — is best possible news and then you know how to manage the aortic stenosis program.
Jill Mullikin I was a bit emotional last night but have a better handle on it today. I guess this was the universe ... Read more
Jill Mullikin I was a bit emotional last night but have a better handle on it today. I guess this was the universes way to tell me I don’t show my boobs to enough people? Jk, jk, but I have to remain positive and look for light where it can be found!
Catie B Hi Jill. Sorry for the daunting news. Yeah...try not to worry about the breast biopsy. I've had sever ... Read more
Catie B Hi Jill. Sorry for the daunting news. Yeah...try not to worry about the breast biopsy. I've had several with innocuous outcomes over the years. And with the fact that your heart issues are mild, they might never reach the point of needing surgery. It can take years and years for things to decline. (They found my mild stenosis at age 15 and I had surgery at 57.) Best to you--hang in there.
Valerie Altman Sheez....when the grasshy becomes the student....sorry to hear all that but at least we aren't strang ... Read more
Valerie Altman Sheez....when the grasshy becomes the student....sorry to hear all that but at least we aren't strangers! We r with u all the way!
Susan Lynn Jill - You're definitely up for Wonder Woman of the Year! The good news is that you are proactive ab ... Read more
Susan Lynn Jill - You're definitely up for Wonder Woman of the Year! The good news is that you are proactive about your health. Almost everything can be fixed with today's medical advancements, if and when it may be necessary. Welcome to the waiting room - don't worry about it though - sometimes that's as far as you will ever have to go.
Valerie Altman Jill...us Indiana girls must stick together lol. My surgery is Oct 16 tell sebastian I'm needing word ... Read more
Valerie Altman Jill...us Indiana girls must stick together lol. My surgery is Oct 16 tell sebastian I'm needing words of wisdom and guidance and knowledge! Did he get a mechanical?I'm currently weighing options
MARIE PICUN Just stay on top of your health. One day at a time.
Sebastian continues to do well even though his boredom level is through the roof. Better to be grumpy and healthy than grumpy with a leaky heart and aortic ...Read more
Sebastian continues to do well even though his boredom level is through the roof. Better to be grumpy and healthy than grumpy with a leaky heart and aortic aneurysm right!!!???
There’s been a lot of ups and downs through this journey with the kid and I just saw Marie post that she has the sniffles and she can’t get sick. It’s probably not a good idea for mom the caretaker to get sick either!
One week before Sebastian’s consultation I came down with what I call Klingonitis on my forehead. At first I thought it was spider bites but then I feared shingles. I thought oh no, I can’t have something contagious while Bastian is recovering because I can’t get kicked out of the hospital 12 hours from home. My 18 year old daughter loves her brother but couldn’t be the only one allowed to be with him. I was prepared to cut bangs and invest in some hats to hide my mutation!
I hotfooted it over to the doc to find out that in times of great stress you can get cold sores on your forehead! Yup, herpes on your forehead!!! Rob, what kind of emoji can we use for that???!!!
My forehead is almost totally healed. There are just a few small indentations remaining. I now refer to that as my stress level indicator and I hope I never see those sores again! Since there’s a limitation to how much I can post with a photo I’ll add it separately. Please feel free to laugh away!!!
Susan Lynn Yes - boredom is a side effect, but it also creates tremendous impetus to get back to normal.
Sorry ... Read more
Susan Lynn Yes - boredom is a side effect, but it also creates tremendous impetus to get back to normal.
Sorry to hear about your Klingonitis, but i love your sense of humor about it! Better days are ahead for all of you!
Rita Savelis You are one amazing person Jill. Thank you for all your posts! (I get stress herpes too...although le ... Read more
Rita Savelis You are one amazing person Jill. Thank you for all your posts! (I get stress herpes too...although less and less...)
Catie B That is a wild stress symptom, for sure. Glad your forehead is doing lots better.
Today marks one week post surgery. We have been home since Saturday afternoon and things are going well. Sebastian’s pain has been minimal and he says it’s ...Read more
Today marks one week post surgery. We have been home since Saturday afternoon and things are going well. Sebastian’s pain has been minimal and he says it’s his lower back that is bothering him. He’s only needed Tylenol since his drainage tubes were removed and he hasn’t taken any since yesterday. He’s had some trouble sleeping due to night sweats and some pretty strange dreams but last night was a better night. He’s getting around well and his appetite is returning. I’ve caught him looking around in the fridge several times.
The biggest challenge for him right now, other than the microwave being too high for him to reach, is boredom and his loss of independence. He’s used to being on the move and I know he feels stuck here. We did make a short trip today to a local nursery for me to look at mums, and also force him to walk a little, and grabbed some lunch just to get him out of the house. I was thinking today “wow, it’s already been a week!” And he said glumly at dinner “it’s only been a week”. Sigh. It’s all in the perspective isn’t it? I return to work Wednesday but I’ll keep up the “field trips” to help him keep moving mentally in the right direction.
I’m pretty dang thankful that his boredom is currently my biggest concern!
Thomas Brusstar I had super crazy constant dreams when I was in the hospital. Pretty much ended after about a week. ... Read more
Thomas Brusstar I had super crazy constant dreams when I was in the hospital. Pretty much ended after about a week. Sleeping on my back all night can cause back pain too, because I’m not used to it. And boredom is a good problem. Walks helped, and finding a new tv show to binge watch (Dr. Pol...) was fun. I actually liked having short visits from friends by a few days after I came home. I’m so happy he’s doing well. I just feel invested in Bash (love that nickname) because I have a teen son and hope he doesn’t have my valves!
Susan Lynn Jill - it sounds like Sebastian is doing great! It takes awhile before you get back into the swing ... Read more
Susan Lynn Jill - it sounds like Sebastian is doing great! It takes awhile before you get back into the swing at home. I'm happy his pain is under control and that he feels well enough to go out. You're going to see tremendous progress in the next two weeks! All the best to everyone! You're all recovering from the last week. 💖
Valerie Altman So great to hear. His story relaxed me a little. Did he have a mini? Anyway it goes GREAT to hear and ... Read more
Valerie Altman So great to hear. His story relaxed me a little. Did he have a mini? Anyway it goes GREAT to hear and inspiring to see how quickly he is feeling a bit better!
Marie Myers Sounds like he is doing very well. He will be able to reach those upper shelves soon.
I understand th ... Read more
Marie Myers Sounds like he is doing very well. He will be able to reach those upper shelves soon.
I understand the boredom. That is the bright side of an uneventful recovery!
Willie Radl Awesome news!! Its all downhill from here. Glad to hear he's getting up and out of the house and eve ... Read more
Willie Radl Awesome news!! Its all downhill from here. Glad to hear he's getting up and out of the house and everything is going well!!
Rita Savelis Oh, gosh, boredom sounds like a great place to be! A week out is so early Sweating and dreams are com ... Read more
Rita Savelis Oh, gosh, boredom sounds like a great place to be! A week out is so early Sweating and dreams are common (maybe he's on a betablocker?) but I'm glad he doesn't have a lot of pain. It's time for a long netflix/video game session. Take care.
Sebastian has had a much better day. He ate a little and has walked around a few times. He looks much sturdier when walking to the bathroom. His oxygen level ...Read more
Sebastian has had a much better day. He ate a little and has walked around a few times. He looks much sturdier when walking to the bathroom. His oxygen level has been great today so no supplemental oxygen. The wires were removed this morning and the drain tubes came out this afternoon. The only remaining connection is his arm IV port. (Not sure if that is the right terminology but he’s not constantly attached to anything.). His incision bandage was removed today and the incision looks great. He had a mini so it’s about 4 inches and went right through his tattoo. The tattoo survived and is still perfectly aligned. I think he as pretty happy about that. (19 year old boy priorities!)
He is very very tired and is currently napping. He normally sleeps on his side so he is finding this adjustment a nuisance but is getting around it. To his credit, he has not once said anything about regretting his decision and we’ve even seen a few smiles today.
Jennifer McInerney That’s great news. I’m so happy for him and you. Every day should be a little better. God Bles ... Read more
Jennifer McInerney That’s great news. I’m so happy for him and you. Every day should be a little better. God Bless and thanks for the positive update!
Susan Lynn Fantastic update, Jill! I'm so thrilled that Sebastian is showing such awesome progress! What a t ... Read more
Susan Lynn Fantastic update, Jill! I'm so thrilled that Sebastian is showing such awesome progress! What a total rock star he is!! I'm also glad that Sebastian is confident about his decision to have the surgery. I sincerely hope he uses this experience as reminder that he can accomplish anything he faces in life. Most of us didn't have to deal with our surgeries at his age and we were all horrified. He has exhibited tremendous courage beyond his years!
Wishing you all a great day tomorrow!!!
Steve Farthing Sounds like a huge amount of progress for only day 3!
What I failed to factor into this whole equation is that the pain meds don’t really touch his pain. It’s been a long night of him trying to get comfortable ...Read more
What I failed to factor into this whole equation is that the pain meds don’t really touch his pain. It’s been a long night of him trying to get comfortable and sleep and of course once he slept for longer than 3 minutes they were in to draw blood. I feel pretty helpless and exhausted. He is frustrated, exhausted, and angry. They want him to breathe deeper and keep his heart rate down but when he’s in this constant state of pain it’s pretty much impossible.
Yet another professional here said this is standard for his age group. Ugh. I did talk the physician’s assistance into one more dose of dilaudid so he is currently dozing. She is supposed to be in anytime to pull the wires and then the tubes a little later this morning. I sure hope this brings him relief.
Rob Sparling Jill, as a “waiting room” attendee, I obviously can’t offer anything helpful about how it’s g ... Read more
Rob Sparling Jill, as a “waiting room” attendee, I obviously can’t offer anything helpful about how it’s gonna go. But you guys are strong, he is young. Strong, young and determined is a formula for getting over the hump. I had hip surgery in 2017 and was in the “younger than normal” category relative to the normal age hip replacement recipient and the muscle mass and other physical differences are a factor and why they explained to me a more tedious recovery was in store for me. Stay strong, let the team do their magic and keep Sebastian focused on tomorrow! Set mini goals for how to get throught the day. Wash, rinse, repeat. That’s all I’ve got! 😊
Marie Myers Youngsters are often far more "reactive" than us oldsters. I, too, was tired, frustrated, uncomfortab ... Read more
Marie Myers Youngsters are often far more "reactive" than us oldsters. I, too, was tired, frustrated, uncomfortable, and sleepless in the hospital. Pain was not bad for me; I was just uncomfortable. I really sympathize with him and you, but you just have to get through it. It will get better. Just be there as a support, but he is the one who has to push through it. It is hard for you, I know.
Thomas Brusstar Pulling the chest tubes helped a lot with my pain. If he’s still near an 8 on pain, they have to h ... Read more
Thomas Brusstar Pulling the chest tubes helped a lot with my pain. If he’s still near an 8 on pain, they have to hit him with something better. Sounds like dilaudid is working for now. Toradol helped me sleep on day 1, finally, when they all seemed reluctant to give me more pain meds. I realize opioids can be addictive, but that would be a problem for a couple days later, or weeks — the pain is right now! And then by two days later, Tylenol was enough. Hang in there.
Can they possibly prescribe a sleeping pill for him? I am sure he will feel better when all the tubes ... Read more
Can they possibly prescribe a sleeping pill for him? I am sure he will feel better when all the tubes and drains are out. Tell him to hang in there. Prayers your way.
Rita Savelis It's so frustrating. It can be so hard to get comfortable after OHS. It's probably harder for you to ... Read more
Rita Savelis It's so frustrating. It can be so hard to get comfortable after OHS. It's probably harder for you to watch in many ways. He's in the middle of it, so he has to express his anger and frustration. I think it's positive to vocalise. There were times in the first week after OHS when I just thought I couldn't do it. The only consolation now is that it will get better eventually, slowly but surely. I do wish someone would give him stronger pain relief. It makes absolutely no sense not to in the days immediately following surgery...
Jill Mullikin Now that I’ve probably totally traumatized those waiting for surgery, I’m happy to report things ... Read more
Jill Mullikin Now that I’ve probably totally traumatized those waiting for surgery, I’m happy to report things are looking better. The staff change this morning gave us a more proactive PA . She has changed up his meds and gave him a pep talk that this portion is all up to how hard he’s willing to work for it. The wires were just removed and they are still aiming for drains later. They told him the more he uses the spirometer and walks the quicker his body will push out the stuff. 5 minutes later he was in the chair with the spirometer and he’s been coughing up mucus. Fingers crossed this trend continues.
LINDA ROBERTS Pulling the chest tubes helped me as well and I felt relief. When they were in me I found them painf ... Read more
LINDA ROBERTS Pulling the chest tubes helped me as well and I felt relief. When they were in me I found them painful
Susan Lynn Jill - thanks for your most recent update. Once all the tubes are out he'll feel much more 'normal'. ... Read more
Susan Lynn Jill - thanks for your most recent update. Once all the tubes are out he'll feel much more 'normal'. They're right - walk, walk, walk. Just getting a different view can be invigorating. I caution him not to overdue the spirometer especially if he has chest pain. His lung capacity will improve in the coming weeks. I had to resist the temptation of trying to over inflate my lungs too soon. Hang in there - the three of you are in my constant thoughts and prayers.
Jennifer John Walk, walk, walk -- even if you don't want to!
I’m not going to lie. This is tough.
We were able to see him about an hour after surgery and he was still on the breathing tube. We stayed with him ...Read more
I’m not going to lie. This is tough.
We were able to see him about an hour after surgery and he was still on the breathing tube. We stayed with him a while but as he started to stir we left for dinner. I am here for him, however, I do have a limit for how much I can handle and couldn’t be around to see the breathing tube removed.
We came back after dinner and he was off the tube but it was a pretty miserable site. He was nauseas and wretching. I again had to leave the room and had a short sobby moment in the lounge. They gave him some meds and in about 15 minutes he was settled back down. We got him some socks and his own blanket and pillow and left him to the care of his nurse.
I felt absolutely horrible leaving him but we were not allowed to stay in the ICU and honestly I was wiped out. There is a program in Philadelphia that provides a room for out of town people and families having procedures done in and around the city. My daughter and I were placed with a local physician and his wife a couple of miles away. Joan and Larry are angels. They gave us one of the guest rooms in their home and Joan even brought us milk and cookies. It was nice to have a non hospital shower and a real bed. We both slept really well until Bastian texted me that everything hurts and it hurts to breathe. I told him we were in the way and have been here since.
He didn’t have a great night. The breathing tube was put back in and he was aware of it for what he described as a few hours before they removed it. He said with it forcing air he felt like he couldn’t breathe at all.
They’ve had him in a chair all morning and when we arrived he said his pain level was an 8. His throat hurts from throwing up and the breathing tube and coughing makes him cringe and hide his face. His chest X-ray this morning was good and they have said the neckline, catheter, and groin line can be removed. The drain tube has to stay a little longer but they are going to disconnect it from the machine and just use bulb suction.
They gave him torodol about an hour ago and he is now reporting his pain level at 6 and a half. I can tell it’s helps because he’s been more engaged with me and he’s also coughing more. He was avoiding it before. He’s been drinking water and has eaten a few crackers. They want to give him oxy but it tends to upset the stomach. They also want to get him back in bed to remove the neck and groin lines. He’s using his little breathing torture contraption because he has zero interest in having the breathing tube tonight and has told the nurse he is never coming back here!
I know he doesn’t feel like it’s getting better but I have seen the improvement in the 2 hours I’ve been here.
(Just as a side note 2 different surgeons and the first ICU nurse said that the pain for these young guys is so much worse compared to the older folks. They didn’t really give an explanation but his experience isn’t necessarily representative of what yours will be.)
Nancy Luth Thanks for the update Jill. I was thinking of Sebastian a lot yesterday. Hope the worst is over for ... Read more
Nancy Luth Thanks for the update Jill. I was thinking of Sebastian a lot yesterday. Hope the worst is over for him.
Rita Savelis Oh, gosh, ICU can be so hard. Breathing tube. Coughing. I'm hoping he will be out of ICU soon especia ... Read more
Rita Savelis Oh, gosh, ICU can be so hard. Breathing tube. Coughing. I'm hoping he will be out of ICU soon especially if they are removing lines and catheters. Then it will be only an unpleasant memory. Cardiac ICU is definitely a place I also told everyone I would never go back to. So I know why he says that. Being in a stepdown room is the beginning of feeling better. My advice is to take as much pain relief as you need, along with something to help the stomach handle it. And intravenous nausea meds... Take care. And I'm glad you got some sleep away from the hospital. You'd need pain meds (and morphine) yourself to be able to handle a night there. Take care.
Steve Farthing Glad he is at least improving and with a repaired valve - wow... I guess I was lucky to convince them ... Read more
Steve Farthing Glad he is at least improving and with a repaired valve - wow... I guess I was lucky to convince them to give a me a couple of doses of fentanyl via IV to avoid the nausea from the oral stuff.
Thomas Brusstar Thanks for sharing that. I can only imagine how painful it would be if my boy ever has to go through ... Read more
Thomas Brusstar Thanks for sharing that. I can only imagine how painful it would be if my boy ever has to go through that. You’re doing a great job.
Susan Lynn I would say that most of the recovery happens in the first couple of weeks. He will start to see big ... Read more
Susan Lynn I would say that most of the recovery happens in the first couple of weeks. He will start to see big improvements by the time he's leaving and in the days to come. He'll feel mostly tired, but that gets better with time. The worst is behind all of you! 💖
Susan Lynn Also, i don't know if it's the lingering effects of the anesthesia, but I don't remember alot from m ... Read more
Susan Lynn Also, i don't know if it's the lingering effects of the anesthesia, but I don't remember alot from my 3 day hospital stay. Between sleeping and the medications, Sebastian may not remember all the details either. Surgery can be very traumatizing for the caregivers because you're watching from a different vantage point. (and you don't get any of the drugs!)
Rob Sparling Thanks for sharing! Glad worst is behind you all.
Willie Radl Hang in there! I'm a bit younger as well and my chest had some pain right after surgery, felt like I ... Read more
Willie Radl Hang in there! I'm a bit younger as well and my chest had some pain right after surgery, felt like I got kicked in the chest by a horse. Nurses told me pain was worse for younger folks as well. They put my on oxycodone and a fentenal drip for the first day and a half. I started to have less pain after a few days but was still taking the oxy the whole time in the hospital. Was pretty much just on Tylenol once I got home. Greener pastures are coming just hang in there the next few days and rest as much as possible.
About an hour ago I received the update from the OR that the valve and aneurysm had been repaired and that Sebastian was off the bypass machine. They were ...Read more
About an hour ago I received the update from the OR that the valve and aneurysm had been repaired and that Sebastian was off the bypass machine. They were then closing and he’d be moved over to ICU. Overall, after the incision was made, the surgery took about 5 and a half hours.
The surgeon met with us a little while ago and said it went well and that there is no longer ANY leakage! My daughter and I have not seen him yet, and honestly I’m a little afraid I’m going to get emotional, but we have turned a HUGE corner today!!
Dan Vechiola Great news! And as Tom Petty sang "The Waiting Is The Hardest Part!"
Judy S Congratulations Jill and hope it’s all great from here!
Rob Sparling I logged in during work to see if there any updates and am SO PLEASED to hear all went well. Congrat ... Read more
Rob Sparling I logged in during work to see if there any updates and am SO PLEASED to hear all went well. Congratulations, Jill and Sebastian! ❤️💪
Tell Sebastian his heart family has been praying for him and are glad he is on his way to recovery. H ... Read more
Tell Sebastian his heart family has been praying for him and are glad he is on his way to recovery. He is lucky to have such a strong mother and sister on his side.
Jennifer McInerney So glad for the update. The worst is over and now the healing begins. Congratulations. I’ll cont ... Read more
Jennifer McInerney So glad for the update. The worst is over and now the healing begins. Congratulations. I’ll continue to pray.
Richard Buckley Sebastian and you have turned a corner. I'm sure you've seen him by now and it is tough I'm sure. My ... Read more
Richard Buckley Sebastian and you have turned a corner. I'm sure you've seen him by now and it is tough I'm sure. My surgery was 5 days ago and I shudder to think how bad I must have seemed. But remember he's getting healthy. Have faith and patience. Be strong. That will help him.
Thomas Brusstar Congratulations! The first day post-surgery will be tough, but he should feel triumphant at having c ... Read more
Thomas Brusstar Congratulations! The first day post-surgery will be tough, but he should feel triumphant at having come through with a successful result! He should feel like the Man of Steel having done so well. Please keep us updated.
Robert Bach This is wonderful news! Congratulations to Sebastian, you and your family.
Joey Hardee Awesome news! Praying for Sebastian. I'm sure he'll get better quickly! Keep us posted when you can.
Meredith Geneja Rejoicing with you all! It's been a long haul, but the corner has been turned.
Valerie Altman Hope all is well with you and your family tonight
LINDA ROBERTS So happy things went well for Sebastian.
Louanna Miller So thankful surgery was successful. The waiting for the family is so tough. My 80 and 83 y/o parent ... Read more
Louanna Miller So thankful surgery was successful. The waiting for the family is so tough. My 80 and 83 y/o parents came to my OHS a month ago and they waited with my husband. Doesn’t matter how old we are, parents need to be there. I am praying his psi. Is minimal and well managed. The first few days can be tough, but Sebastian is going to push right through.
He’s with the anesthesiaologist now and heading to OR. They said they’d call me around 830 with an update. He was in better spirits when they started some ...Read more
He’s with the anesthesiaologist now and heading to OR. They said they’d call me around 830 with an update. He was in better spirits when they started some medication in the IV and he said this would be like time travel for him.
We all got a few hours of sleep last night and tried to keep the mood light. They got him up around 5 to start with the wipes, nose goop, vitals, etc. They let us sit with him in preop and we could tell when they started the meds in the IV. He said it was cold and that his head felt wide and then started chatting more. He had been pretty stoic up to that point.
Susan Lynn He's going to do just fine. Today, will be exhausting for you and your daughter, so be sure to take ... Read more
Susan Lynn He's going to do just fine. Today, will be exhausting for you and your daughter, so be sure to take care of yourselves. For Sebastian, it's going to feel like he was asleep for one second. Prayers are with all of you. Please keep us posted throughout the day if you can, Jill.
Joey Hardee Prayers for a smooth surgery and quick recovery. Update when you can. :-)
Jill Mullikin Susan, I told Bash this morning I’d see him soon and he said yes,
This is like time travel for me.
Note to self: do not go for a walk outside of the hospital at 330am because you will not get back in.
I’m sure I could have gotten in through the emergency ...Read more
Note to self: do not go for a walk outside of the hospital at 330am because you will not get back in.
I’m sure I could have gotten in through the emergency department but this place is huge. I can only imagine what they would have thought of me walking in there in my pajamas and squinting from the lights. It was a quite nice morning nonetheless. I slept in the car for 3 hours or so and was able to get back in.
The consent form was signed this morning and it’s a go for 645am Eastern tomorrow. Sebastian is being very quiet today so far so hopefully the Xanax and Xbox combination will get him through today.
I’m waiting to hear where my daughter and I will stay while he is in ICU. There are families in the area that provide a room for $5 or $10. I’m not opposed to staying in the lounge in our floor or in the car. (I have a Ford Flex and with the back seats folded down I have a piece of memory foam. I wasn’t sure how Bash would travel after the surgery so I wanted to have a laying option).
We are hanging in there and ready to be in the other side of this!
Rita Savelis Wishing you and Sebastien the best Jill.
Richard Buckley Wishing you the best. Remember courage, patience. Love, trust and confidence.
Willie Radl Wishing you the best!! FYI my wife was able to sleep in a recliner in the ICU with me. I'm sure you c ... Read more
Willie Radl Wishing you the best!! FYI my wife was able to sleep in a recliner in the ICU with me. I'm sure you can probably do the same, I don't see why they wouldn't let you sleep there
Sebastian was admitted yesterday afternoon for Monday surgery. I asked about being admitted over the weekend but they said we would have to say he was experiencing ...Read more
Sebastian was admitted yesterday afternoon for Monday surgery. I asked about being admitted over the weekend but they said we would have to say he was experiencing symptoms and come through the ER. Sebastian chose to avoid the ER.
I would again used the word “resigned” to surgery. He was the most agreeable I’ve seen him during the admission process and meeting the surgeon but he did have a bit of a freak out moment later on. He was sitting in his bed with his shoes on so I was ready for him to bolt. The nurse noticed he was agitated so my daughter and I left the room. As we were standing at the nurses station an alarm went off and they all started to scramble to our room. The nurse waved them off but apparently when your heart rate goes above 135 the staff responds in force. The nurse practitioner talked to him and convinced him to stay and Bash agreed to a Xanax.
Today was a little rocky starting because the pulmonary doc told Bash he has the lung capacity of a 43 year old. I wasn’t able to ask if his lung function will improve later.
My daughter and I went to a local Target and bought an Xbox so Bash has something to occupy his time. Unlocking the HDMI port on the tv in his room was an almost all day event but I finally got it. It involved a CVS run for a Universal remote and several hours research to find the right hack to get into the tv programming codes!!
Our surgeon, Dr. Plestis, seems like a genuinely nice man and the staff here has been very welcoming. The rooms are private and we are able to stay with him.
My daughter is working on her college classes, I’m getting ready to read a book and Bastian is setting up the Xbox. I know I’ll still be nervous during surgery but I think I’ve made my peace with this whole thing. The bypass machine used to really scare me and seem unnatural but my thinking has shifted more to isn’t it amazing that they can do that and they do this every day.
Rob Sparling I hope the Xbox and Xanax do the trick! Keep working toward the goal!
LINDA ROBERTS You will do great with surgery, Sebastian.
Susan Lynn Jill - You'll get great care there and when it's over Sebastian will be so glad he did it. He should ... Read more
Susan Lynn Jill - You'll get great care there and when it's over Sebastian will be so glad he did it. He should feel like the teenager he is. Please keep us posted on Monday. We'll be waiting for the good news!
Robert Bach Best of luck to Sebastian and your family from a fellow Hoosier.
Judy S Best of luck Jill. I think your attitude about the bypass machine being amazing is going to really he ... Read more
Judy S Best of luck Jill. I think your attitude about the bypass machine being amazing is going to really help. The more you learn about all of this makes it seem much less scary! I hope Sebastian will be able to enjoy the recovery process
It is amazing how fast your emotions can change while waiting for the big day. It is like someone has ... Read more
It is amazing how fast your emotions can change while waiting for the big day. It is like someone has a switch in your head to turn on and off. My family could look at me and one minute I would be crying and the next laughing. Before surgery peace will find you as you realize how great your surgeons and caregivers are. You got this Sebastion. Prayers your way.
Thomas Brusstar We’re all rooting for Sebastian! Just be strong and show them how fast a 19-year-old can recover. ... Read more
Thomas Brusstar We’re all rooting for Sebastian! Just be strong and show them how fast a 19-year-old can recover.
Louanna Miller My thoughts and prayers are with you and Sebastian. One deday bay a time. Monday will be a long day ... Read more
Louanna Miller My thoughts and prayers are with you and Sebastian. One deday bay a time. Monday will be a long day, but please keep us posted on his surgery. He will do great.
Dan Vechiola Good Luck to Sebastian and you Jill. He is getting his heart repaired and will now be able to move fo ... Read more
Dan Vechiola Good Luck to Sebastian and you Jill. He is getting his heart repaired and will now be able to move forward with the rest of his life and not feel hostage to his heart.
Consult was today and we have hit a small delay. Sebastian has picked up a bit of a cold and chest congestion so they have him on an antibiotic. Looks like ...Read more
Consult was today and we have hit a small delay. Sebastian has picked up a bit of a cold and chest congestion so they have him on an antibiotic. Looks like the earliest now will be next week.
LINDA ROBERTS Sorry to hear that. Hope Sebastian feels better soon.
Tina Maroon Hope Sebastian feels better real soon.
Marie Myers Sorry for the delay. Hope he recovers from the bug quickly!
Thomas Brusstar Hey, it pays to be careful about the complications you can prevent. After surgery, getting full lung ... Read more
Thomas Brusstar Hey, it pays to be careful about the complications you can prevent. After surgery, getting full lung function back is one of the few things the patient can actually help with, so breathing exercise are crucial. Why start out compromised. Plus infections in general are a complication nobody wants. I know it prolongs the wait — it’s like Hurricane Florence slowing down right off the coast! — but it’s a chance for Sebastian to go into surgery when his recovery will be best.
Dan Vechiola Hi Jill! Yes sit through that rain delay so Sebastian can be at his strongest when he has to deal wi ... Read more
Dan Vechiola Hi Jill! Yes sit through that rain delay so Sebastian can be at his strongest when he has to deal with the impact of the surgery. The surgery is tough on the body so Sebastian being close 100% will enhance his recovery.
Jennifer McInerney Just when you think you have everything sorted, a cold messes it up. I hope Sebastian feels better ... Read more
Jennifer McInerney Just when you think you have everything sorted, a cold messes it up. I hope Sebastian feels better soon and his day at the main event can move forward. you need to be top of your game for getting through this so delay is wise, We are all praying for him.
Sebastian’s surgery is scheduled for September 13th. He has chosen to have his valve and aneurysm repaired via mini sternotomy. This morning he had the ...Read more
Sebastian’s surgery is scheduled for September 13th. He has chosen to have his valve and aneurysm repaired via mini sternotomy. This morning he had the corotid ultrasound and pulmonary function test. We are still waiting on the insurance approval for the angiogram. The plan is to do it and the bloodwork once we are in Pennsylvania. My kids and I will be leaving Sunday morning and are splitting our drive into 2 days. The consult is Tuesday and then surgery Thursday if all goes as planned.
Thomas Brusstar I'm so glad this is working out. Sebastian will be happy he got in front of this problem rather than ... Read more
Thomas Brusstar I'm so glad this is working out. Sebastian will be happy he got in front of this problem rather than letting it haunt him.
Jennifer McInerney I will be praying for Sebastian and and you. He is in Gods healing hands .
Louanna Miller What a strong young man. He will be glad he made this choice and feel better in the long run. Though ... Read more
Louanna Miller What a strong young man. He will be glad he made this choice and feel better in the long run. Thoughts and prayers are with you as you travel and he has tests and surgery. Please keep us posted as time permits.
Valerie Altman I dont know how hard it is to make that decision...yet. I meet my surgeon the 28th. My kids are givin ... Read more
Valerie Altman I dont know how hard it is to make that decision...yet. I meet my surgeon the 28th. My kids are giving me the bravery I need to say okay fix me
Rita Savelis Everything is moving forward. Wishing you and your son the best.☺
Dan Vechiola Knowledge is power! Congrats on putting in the time and research in your son's best interest. I wa ... Read more
Dan Vechiola Knowledge is power! Congrats on putting in the time and research in your son's best interest. I was diagnosed at 18 and was terrified as well. So happy to see Sebastian taking this on for the health of his future. Safe travels and best wishes for a successful surgery!