Brian, 9 has gradient of 200 and is going for a myectomy/ICD

[Sheila and Paul Shy Heart Find all posts View Profile Close Sheila and Paul]

Brian just got back from tests at the hospital - his gradient is 200 and they are hoping to get him to surgery in the next two weeks in Toronto. Nine months ago at his last checkup his gradient was 70.

Has anyone had a child with that much of a gradient? Also his septum measurement is 4cm.

Any replies are appreciated.

Sincerely, Sheila and Paul

[Linda Super Moderator Find all posts View Profile Close Linda]

Sheila and Paul, Welcome to the site. I'm glad you've found us. You've gotten some pretty shocking news, and it's going to be tough for Brian to take it all in also. Two wks isn't long to plan, but you will get thru this whole thing with the love and support of family and friends. We had just about one wk's notice when my son had his myectomy, but you do what you have to do.

Try to call Lisa and talk with her. Talking to her will give you much reassurance about the surgery, Toronto, and just HCM in general. I know you will have quite a few responses here, offering you much support and info. Please keep us informed, and know that our best wishes and prayers are with you all. Linda

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

Hi, Sheila and Paul,

I am sure I speak for all of us when I say that we are so sorry that your family has to go through this. There are several parents of young children who have had myectomies who are writing on this board. I am sure that they will have more to contribute to you. I do know that most children do very well with this and recover well, so that is what I will pray for you and for Brian.

Rhoda

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Hi Sheila and Paul. Welcome to the HCMA. There are others here who have children who've gone through a myectomy. I'm sure they will be glad to share their experiences with you. Please do give Lisa a call. Her phone number is 973-983-7429 and she will be in the office on Tuesday.

I'm posting a link to a thread where a 5 year old boy had a myectomy earlier this year. He's doing really well now.

http://www.4hcm.org/phpBB2/viewtopic...973&highlight=

Also check out posts from mflanagan. Both of her children have had myectomies. Best of luck. We're here for you.

Reenie

[Sheila and Paul Shy Heart Find all posts View Profile Close Sheila and Paul]

Thanks everyone. This website is really a wonderful place for support!

Lisa started something great.

I will let you know how Brian progresses.

Sincerly,
Sheila and Paul

[Dolly (Andrew's mom) Contributor Find all posts View Profile Close Dolly (Andrew's mom)]

Hi Sheila,

My son Andrew had a myectomy when he was 6 years old. His gradient was not near as high as Brian's at the time of the surgery, but it had increased pretty drastically in a short amount of time also.

Andrew had absolutely no complications at all after his myectomy and he recovered very quickly. (Home in 6 days!) He had his done at Mayo clinic. The surgery was a huge success! His septum has continued to grow (up to 3cm now)but in the 9 years since his myectomy the obstruction has not returned to a point that it needs any intervention. So I consider that a success and well worth it!

I am sorry you all have to go through surgery. I know it is very hard when it is your child and my heart goes out to you! Please just ask if you have any more questions!

best of luck and please keep us updated.

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

A little background. Sheila while new to the message board is not new to the HCMA. I can recall speaking to her years ago (maybe as many as 5+ yrs ago). She is one of the many who we work with at the HCMA who are not frequent posters to the site, but are frequent visitors.

I was out of town when she posted, but Kelly called me to tell me about this "newbie" - which lead me to explain that Sheila is not a real 'newbie', just not a "message board " participant up until now.

I called Sheila yesterday and was thrilled to hear that Dr. Bill Williams will be performing the myectomy. He is a wonderful surgeon and a sweet heart of a man. Brian is in wonderful hands and our thoughts and prayers are with them all during this stressful time.

Sheila and Paul - we are here for you anytime!

Best wishes,
Lisa

[shirleymahoney Brave Heart Find all posts View Profile Close shirleymahoney]

Best of wishes with your son's myectomy and welcome to out little community, and know we are here for you

Shirley

[Eileen2345 Member of 1000 Post Club! Find all posts View Profile Close Eileen2345]

Sheila and Paul,

I'm sorry your family is going through this, especially your wonderful son.

I wish him a speedy recovery and you are all in my thoughts and prayers.


(((((((Hugs)))))))

Eileen

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

Sheila and Paul,

My thoughts and prayers are with your family and your son through these trying times. I will keep a positive thought for a very speedy recovery for him.

Pam

[Sheila and Paul Shy Heart Find all posts View Profile Close Sheila and Paul]

Thanks everyone for the support and caring. My son Brian was diagnosed at 2 years of age - I thought my world was over and my son was the only "one" who had this diagnosis - that is when I first found Lisa and she has been my inspiration ever since. Through much hard work and determination I have seen this website evolve into a top notch site of expertise, current information and a wonderful "family" of support. You cannot get better than that.

I visit this sit often, and read every line, but don't post, as I am a computer klutz.

Just to know other kids have gone through this is a source of comfort.

Again, thanks everyone and I will keep everyone posted on Brian's progress.

Love to all - Sheila and Paul

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Brian will continue to be in my prayers through this surgery and the recovery period. Also, you and Paul will be too. It's as much a trial for you as for Brian, maybe more. Do you have other children?

Reenie

[Sheila and Paul Shy Heart Find all posts View Profile Close Sheila and Paul]

Yes, Brian has a younger sister - Ellen who is four years old. She gets checked yearly and so far so good!

Sheila

[Brownie Contributor Find all posts View Profile Close Brownie]

Hi everyone:

I'll be brief, since my computer keeps crashing, but Sheila asked me to let you know that Brian has had is surgery, and is currently in the CCU at Sick Kids in Toronto. Olivia and I were there for her ICD interrogation and we met briefly with Sheila. His surgery was yesterday and took about 7 hours. Shortly before we saw Sheila, Brian had his breathing tube removed. She said that he's awake for short periods of time, but is doing as well as can be expected. He'll be in CCU for a couple more days, then will move to the ICU, then finally to a ward. I'll keep you posted as I hear from Sheila.

Abby

[Dolly (Andrew's mom) Contributor Find all posts View Profile Close Dolly (Andrew's mom)]

Abby,
Thank you for updating us. I am so glad to hear the surgery went well, and I pray his recovery is quick and with no complications.