Kids surgery

[Cindy]

Thanks Janet. I'm going to book today. I just want the room to catch an hour or two of sleep. Plus take a shower and have a change of clothes etc. Just so I can be refreshed. Not fell dirty and grimey. The walk will not bother me from the car to the Med Inn. I ate at Wendys plenty of yrs taking my kids to their appts. They just closed, they are having an Einstein bagels. I guess Wendys lease was up.My kids have seen Dr. Weshcler at Mott for 10 yrs. Now we see Dr.Deeb the surgeon. He is not at Mott. He is at the Univeristy but two of my kids are adults 22 and 21. They still saw Dr. Weschler when they were over 18. We saw her for so long they were comfortable with her. But when we needed a surgeon we decided to go with an adult surgeon. Jeffrey just turned 17 but they will see him.It kind of worked out at the right time. Dr. Weshcler and her husband moved in October to Duke University. Her husband is a Pediatric Onocologist and he became head professor at Duke. Dr. Deeb is in the new Cardiac Center. It opened June 11. It is absolutely beautiful. Very soothing center. There are walk ways to Mott and the University.Just like there is walkways from Mott to the University of Michigan.We live 2 hrs from the University of Michigan. To drive home to take a shower would be too much. I also want a place so if my family members want to take a nap they can. I will ask about the microwave and refrigerator. I know the driving in Ann arbor is horrible. We had to stay all day to get Jeffreys CT scan at 9 pm a few weeks ago. We went to the downtown area and walked around. I got lost going back to U of M. I searched for the mall, never found it.
Who was your doctor? Is your daughter doing ok now? Did she have valve replacment? I'm so nervous every day when I wake up it is the first thought in my head.
Thanks for all the information.
I really appreciate it.
Have a good weekend,
Cindy

 

[geebee]

Cindy,

Chris and I stayed at the MedInn when we went up to see Janet and Katie and it was very convenient. The rooms are adapted hospital rooms but the beds are very comfortable and very clean. If you want to get away for food, there are a lot of restaurants about 2 miles from the hospital (turn left on the road behind the hospital - runs parallel to the main road that runs in front of the complex). As Janet said, the walk from the car to MedInn is a hike so try and take suitcases with wheels.

Everyone at the hospital is fantastic so just their demeanor will help to calm you down. They were great about people in Katie's room as long as quiet was maintained.

Wishing you well.

 

[Cindy]

Kids surgery, visiting?

Kids surgery, visiting?

Thanks. You are all great.
Another question when in ICU who can visit?
Visitation In the rooms do they follow a schedule of 11-8 ? Can people come before/after regular visiting hrs? I have a 9 year old can he visit?
Thanks for directions to resrurants. I always get turned around and lost in Ann Arbor.
Thanks,
Cindy

 

[tcopel]

Cindy, being a parent myself, I think it is harder for me if my kids have problems than if I was to have those same problems myself so I understand what you must be going through. Hang tough and continue to do your research like your doing.
I had the aortic valve sparing procedure (called the David procedure) and an aortic aneursym repaired 5/14/07. I agonized over the choices of tissue, mechanical or the David procedure. Here is my understanding (which you need to verify for yourself).
Given that it is a relatively new procedure, there are only a few 10 year studies available in reference to the durability of the repaired valve. Those studies suggest the viability of the valve to be at 90% in ten years. Thats pretty good. The down side is that no one really knows how long the repair lasts simply due to the fact that it hasnt been done that long. You can review these studies online. My surgery went well but I was very tuned in to the fact that the surgeon needs to have a few of these surgeries under his/her belt. I would think you would need to ask your surgeon how many he has done (dont be afraid to ask, ask, ask). The learning curve is steep and I did not want to be on that learning curve for a procedure that warrents a fair amount of judgement/skill on the surgeons part.
Why do your kids need valve surgery? Aortic regurgitation, aneursym, ?
Are they symptomatic?
Random thoughts in no particular order for your consideration. My surgeon suggested prophylatic antibiotics prior to any subsequent procedures like dental work ect. I do not need coumadin which is required for mechanical valves. The time on the pump is fairly long compared to other valve replacements (3 hours I think). There are people who may not be ideal candidates to have the surgery but I assume you surgeon has assessed that. I also had a strong feeling that I should somehow assess or interview my anesthologist(?sp) but I really couldnt find a way to do that in the time frame allowed to me so I simply asked my surgeon eye-to eye to please get me the best anesthologist (Remember, dont be afraid to ask these things). My time in the ICU was overnight, then moved to a step-down unit for 3 days. Then discharged . Given that I had my surgery done out of state, I spent an extra two days after discharge in a hotel room right around the hospital recovering before traveling. The visiting hours, it seems to me are pretty well enforced, but I think this is dependant on the hospital staff for the most part. Some are strict, some leniant.
Lastly, I know this choice is extremely difficult. You will find many many reasons for the choices made by each person here on VR. Each is a personal decision. The best thing I can say is to make yourself as educated as you can regarding why the advantages and disadvantages of each. Have a surgeon that you can trust (it seems that you do) and be upfront with your questions about anything to anybody including here on VR and myself.
I'll be thinking and praying for all your family. Let us know of the proposed surgery date.

 

[Cindy]

Kids surgery

Thanks so much. You are right I need to ask questions. I do know my doctor has done many valve sparing. It is his speciality. He studied under Tirone David. So I'm confidant of him. It's the ansteologist that makes me nervous. My husband said he is the number one doctor for this surgery in Michigan, he would have a good ansteologist. I hope he is right. We go to the Doctor July 10th. I will ask about the ansteologist then. They have a anurysm. Their father died of a dissection 12 yrs ago. He did not know he had anything wrong. He died in our living room in front of my boys.That is when we found out my three kids had it. They have some characteristics of marfan but only 2You need 5 to be considered marfan. My 17 year old is symptomatic. Not my 21 year old son. I really want the valve sparing. I will do more research. I just want to make the best/ most informed decision I possibly can. I appreicate all your information. Everyone has been very helpful. Thanks so much
Cindy

 

[Cindy]

Kids surgery

Why do you have to be on bypass longer for valve sparing? Is three hrs long to be on bypass?
Thanks, Cindy

 

[geebee]

Hi Cindy,

Janet might be a better source for visiting hours since Chris and I were only there for a day but, as I recall, they only made people leave during shift change. I think other than that, you can visit 24/7. We had 3 people in Katie's room at one point (I think they prefer only 1 or 2) and the nurses seemed fina as long as we got out of their way when they needed to do something and we were quiet.

 

[catwoman]

Cindy:

Good luck with your kids.

Is a valve sparing surgery a repair? I'm a little confused by the term "valve sparing." I see it occasionally and have wondered if it's different than a repair.

 

[tcopel]

Cindy, training under Dr. David has got to be a significant plus. While I was contemplating whether the valve sparing surgery would be in my best interest or not, my wife e-mailed (she found his address on line) him and he kindly responded very quickly. He asked for all my studies be sent to him and then he responded via letter on two occassions so I was very impressed by him. I didnt have the time to navigate the Canadian healthcare system so elected to go a surgeon in Pittsburgh. I dont know why I developed the aortic root aneursym as I clearly do not have marfans but, as you say, there may be variety of subtypes. It seems every valve choice has got pros and cons and thats what makes it hard.
I think it takes longer for the valve sparing surgery (which, catwoman, is a surgical removal of the aortic valve, repair of the valve if needed and reimplantation within the dacron graft..rather than a st. jude/onx valve), as it requires time to repair the valve and place it in the graft. The dacron graft is also modeled to form a area of the aorta just above the heart called the 'sinuses' so all that requires time to do. During this time, they "chilled" my brain to help lessen the chance of stroke. I dont know if all this helps or not, Cindy. I dont want to talk you in or out of your decisions. I'll just try to give you info as I found it, but you should always talk to your doctor about everything.
I'm sure everything will work out fine. As many people here on VR will attest, its those days leading up to the surgery that are sometimes the most difficult as your mind tends to race and conjure up all kinds of "what ifs". Mine sure did.

 

[Cindy]

Kids surgery

Hi, I have been investigating. I just hope valve sparing is the right choice. Dr. Deeb said he do valve sparing if it was his kids. Actually we went to the doctor on June 15th with the decision to get mechanical. Lasting a lifetime was the main decision. Comuntin was really my only concern. But Dr. Deeb really recommended valve sparing. He acted like it was the best choice for the kids and mechanical as a back up. He has done a ton of these surgeries. Every time we get a Echo, TEE, CT Scan all the technicians act like Dr. Deeb is the best at the University of Michigan. I think he knows more so we decided to follow his recommendation. I just hope we are making the best decision. I'm just so worried and my anxiety level is extremely high.I think this will be a long month.
Everyone here has been really nice and extrmely helpful
Thanks,
Cindy

 

[tcopel]

Although I know its hard, try to find some comfort in knowing that you've done all that you can. You sound to be a great mom. Once you get past this surgery (twice), my hope is that you can say, " you know, it wasnt so bad".
All on VR will keep you and your kids in our prayers. Please keep us updated with thoughts and questions.

 

[WayneGM]

Cindy, I've been following this thread, and just wanted to extend my best wishes to you and your kids. Dr. David performed my mitral valve repair and he is a pioneer. All the staff at Toronto General consider him absolutely amazing. If your Surgeon trained under him, I am sure that's a significant positive. Positive thoughts going your way.....

 

[Cindy]

kids surgery

kids surgery

Thanks everyone
I work alot the next 4 weeks. I thinking working will help keep my mind off things.
I trying to be informed as possible. Knowledge has to be good.
I have a list of questions to ask our surgeon July 10th.
I appreciate everyones support.
Everyone on this board is great.
Thanks,
Cindy

 

[gijanet]

(((hugs)))

(((hugs)))

Another question when in ICU who can visit?
Visitation In the rooms do they follow a schedule of 11-8 ? Can people come before/after regular visiting hrs? I have a 9 year old can he visit?
Thanks,
Cindy

Yep, Cindy, I'm afraid to say that you will be a basketcase until this is all behind you.............but you are certainly entitled to be one and I dare anyone to say otherwise.

I would suggest you contact the University cardiac ICU for the hours. I am only familiar with the Motts PCTICU and they might be different. At Motts, visitors are allowed around the clock, 24/7, except for shift change or if there is a crisis of some sort (like a kid coded.........and sometimes they have even let me stay then by closing our curtain and obscuring me from sight........just depends on the nurse........or something even more tragic and more unthinkable happens - they close the ward for the sake of the parents involved and for the nurses and staff to regain their composure). They do like to limit it to two, but during slow times, they will sometimes let you sneak in three (like when Gina and Chris visited - what a wonderful treat), but it depends on the nurse. At Motts, all siblings except babies are allowed to visit. I'm quite sure that it will be okay for your 9 year old to visit, but again, I would check.

As for Katie, yes, she did have her common atrioventricular valve replaced. We tried two repairs first, but the first one didn't hold and the second one was just too tight for her heart to adjust to the new pressure of that tightened valve and her new fontan circulation. Please don't use Katie as a comparison for repair success, though. Her little heart is very, very unique and her valve was so misshapened to begin with (her mitral and tricuspid valves are one merged valve) and the tissue was myxomotomous. We have several members on here who have had very successful repairs. Melissa immediately comes to mind. She pops in every now and then.......maybe she will soon. Dr. Bove is our surgeon, but we have been there so frequently, sad to say, that we have dealt with most of the staff cardiologists on hospital rotation.

I can relate to losing a beloved PC. We lost Katie's right before her last set of surgeries. He had followed her since birth and did all of her followup and routine care here at home, but he moved to South Carolina. What a blow! I felt like we had been abandoned,and he was so wonderful. I seriously contemplated moving to SC..........

Okay, enough ofmy ramblings. My thoughts and prayers will be with you. Please keep us posted and yes, I think keeping busy is a good thing. Do try and have at least one good quality family outing, though, before all of this takes place. Someplace away from phones and the internet and outsiders............and have fun.

Many hugs. J.

 

[doberman]

I also had my mitral valve repair performed by Dr. Tirone David, if you are interested you can google him there are some interesting interviews with the him, he is quite an inspiration. As Wayne mentioned he is very well respected. When I was in the ICU recovering the anaesthetist showed up and mentioned it was a full house in the OR while I was under, Dr's fly from all over the world to watch him work. We will be watching for the day when your kids go in, please keep us all up to date.
Best.