How are briansmom and Brian doing?

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Thanks for checking on us; sorry for the delay. Brian seems to be doing ok, but his EF is only 27% and they are waiting to do a CT to check something on his ascending aorta that looked funny. I am so scared that we are running out of options for him. You guys have been so supportive and I don't have a lot of answers right now. I think I am doing pretty well in spite of this, but maybe I am just in denial. We are supposed to get the results from his genetic Marfan test this Friday or next and we are working on getting a consult at Cleveland Clinic. Hopefully, that will give us a direction to go....
 
Marsha, great minds think alike. I was thinking of the same thing earlier.

Deanne, you and Brian are still in my prayers and warm ((((hugs)))) continue to be sent your way.
 
(((hugs)))

(((hugs)))

Deanne, Thanks for the update. I feel your fears and my heart aches for you guys. I am praying for good options from Cleveland. Many hugs. J.
 
I am praying that the situation improves soon. You must be completely exhausted physically and emotionaly. Try to find some time to take care of you too. You are all in my thoughts.

Rhena
 
Deanne,kept up with your posts and never did any of
you miss in my prayers and continued prayer for you all.
Think of all your delimas with Doc's etc and your supermomisum not in
dictionary, but my label for you:)
You are one heck of a lady who deserves it all and Brian Hugs to
you as well in all your strenght you and your family have and you
get better soon ....God Bless
 
I hope the consult at CC gives you some answers. I don't know who your working with but Dr Gosta Petersson was my surgeon and he tends to gravitate towards the truely complex cases. I was fortunate to have him as my surgeon considering I had a "routine" AVR. I have all the faith in the world that they will be able to help you and Brian.

Keep you head up, you have everyone on here praying for you both...
 
I've been thinking of you and Brian. I've heard good things about Cleveland Clinic- they are always in the top ten for pediatric cardiology. I hope that a consult with them can give you some answers. The not knowing is usually the hardest part. You guys are in my thoughts- and prayers. Keep us posted. Take care of yourselves. Eat your wheaties :)
 
You've been in my thoughts, as well. It is good you are trying to go to Cleveland. They have some brilliant minds and incredible talent there. One of the best places to head to.

So hoping there is a genius there with a treatment plan to help Brian.
We all hold our breath with huge hopes for Brian and you.
 
Deanne,

My prayers are with you and Brian. I hope the Cleveland Clinic will give you some peace.

Stay strong for Brian - you are a great mother.

Blessings,
Lori
 
Thanks guys, it really does lift me up to read this. BTW, I went to Glen Ivy today (well known So Cal Spa) with my girlfriends today. We snuck in a bottle of champagne and a couple of Mikes Hard Lemonades and laid out in the sun and sat in jacuzzis all day!

The doctor at CC that we are trying to get the consult with is a vascular specialist that is the leading expert in Fibromuscular Dysplasia which is the docs latest attempt at guessing what is going on with Brian. If we go to CC, I will also get him an appt with a cardiologist or surgeon since we will be there anyway.
 
Deanne, good luck at CC. Glad you had a good time at the spa, and you and Brian are still in my prayers also. Tell him hi for us.
 
Hi Deanne. Thanks for updating us (and cheers!! good for you for taking a break and relaxing). I was out of town with my 86 year old mom and 84 year old aunt. What a hoot!!! Anyway, thought I'd bring this thread back up "to the top" so that we all can keep you and Brian in our best thoughts.

Do keep us posted. Hoping that Brian is coping well and able to lead a somewhat normal day to day existence these days? Is that possible for him? Is he back in school?

Best wishes.

Marguerite
 
Received word today that Brian's cardio and the FMD specialist at CC finally talked. She is willing to see him so Monday I will start the process of getting him an appt. His marfan genetic test is not done but they say it should be ready by next Tues.

Brian is trying to get back to normal. He has been going to school but he only has one class this semester. He also worked a few hours yesterday. I still worry though because he has been sleeping 12-16 hrs/day. This weekend my other son has a big motorcycle race and Brian is going with his brother as coach/mechanic/cheer leader. He definitely lives vicariously through his brother when it comes to motorcycle racing.

Thanks for checking on us!
 
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