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Need another pep talk!!!! (Read 4746 times)

twinsmom

Experienced Poster

Offline

16 year old twins with
MM

Posts: 128
hollis, USA, NH, New_Hampshire
Gender: female

Need another pep talk!!!!
May 15^th, 2007 at 10:46am

Hello MM Family!! Smiley

I need another pep talk!! You know how I tend to worry (remember the bee stings - and the shaving?) Roll Eyes

Well, this one's a doozy!! The girls are both having their tonsils removed on 6/26. And while half the kids in America do this as a day procedure, due to the MM, my girls are considered high risk. We're going to Boston, so that the anaesthesiologists will be very familiar with MM, and the surgeon has consulted with both Dr. Scott and our neurologist.

The girls both have tonsils the size of golf balls, their throats are ALWAYS sore, and it's even affecting their breathing. It's really time for them to come out, I know that. What REALLY BUGS me is that 4 months before Cassie was diagnosed with MM, both girls had their adenoids removed and tubes put in their ears. At the time, we lived in NC, and I BEGGED the doctor to take out their tonsils too. He wouldn't do it!! He said since they don't have more than 6 strep throats/year, they didn't need them out!! The big booger head!!!! Smiley

I have every confidence in the team, but the "what if's" are keeping me awake!! This time, there isn't enough red wine in the world to help!!! Thank goodness the gathering in San Antonio is the week before - I need you guys!!!!!!!!!

Please, send words of encouragement. Tell me I'm a worry wart!! Then, if you wouldn't mind, say a little prayer too, ok?

Thanks, guys!! I love ya to pieces!! I'll see you in TX!!

Kiss

Kristen

"Come to the edge." "We can't. We're afraid." "Come to the edge." "We can't. We will fall!" "Come to the edge." And they came. And he pushed them. And they flew. by Guillaume Apollinaire

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Islandentity

Experienced Poster

Offline

My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male

Re: Need another pep talk!!!!
Reply #1 - May 15^th, 2007 at 11:01am

Wow, I guess i havnt fully grasped the far reaching implications of mm. to be considered high rish for such a routine procedure has to be scarey but at the same time high risk for a stroke pre surgery is in my mind more alarming. your twins pulled through those surgeries just fine, doctors are just protecting their success rate, you must be extremely comfortable with the fact that the Docs are communicating with each other....In short you a worry wart (you told me to say so) every thing will be fine, and yes I say a prayer for you

Mike

BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin

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mg12061

Old-Time Poster

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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: Need another pep talk!!!!
Reply #2 - May 15^th, 2007 at 11:31am

Kristin, Yes you are a worry wort! LOL,But so am I, so I do understand how hard it is to "just relax".It should be reasuring that the docs are taking extra precautions with your girls,this way they can avoid any complications. I will certainly keep YOU and th egirls in my prayers.Kathleen's tonsils are HUGE also (in the words of ehr Dr. they're the size of Rhode Island).But they don't seem to bother her, she doesn't get sore throats anyway.The one thing we're having a problem with this spring is air born allergies she's had one sinus infection already and I think another one is starting.It makes it sooooo hard to sleep because she doens' like to breath out of her mouth and this wakes her up constantly. Good luck and many prayers, and please do leave a little red wine for the rest of us.Maybe a bit of chocolate with it would help.
Mary Grace

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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Need another pep talk!!!!
Reply #3 - May 15^th, 2007 at 7:57pm

Kristen,

From a mother's perspective and as a caregiver to a brother, I feel your anxiety. However, try to keep this in perspective even with MM. A gallon of wine should be sufficient. LOL!

Laying all jokes aside, Kevin had to have teeth pulled under general anesthesia. I thought OMG! Well, it went fine. I try not to think of the what ifs. Easier said than done. Remember everyday is a gift.

I try to keep these types of things in perspective by reminding myself I could get hit by a bus. That's not so far fetched as I work downtown and have almost been taken out in the crosswalk by a car.....not once but several times. I still cross that same street every morning.

It's hard sometimes to let go but when you know you have done all you can do to make things go as smooth as possible......getting a good team of docs is paramount and you have done that and I know you would have the twins surgery for them if you could, but we know that is not possible so you have to trust and let go. Go to the edge.

I realize the twins are your babies but they have to have those tonsils out and especially due to size or you could be looking at something far more difficult to deal with in the long run if they don't get this done. I know you know this, so go to your happy place and everything will be fine. The glass can be half full or the glass can be half empty. Do I sound like a mother or what? LOL!

That's my pep talk and I'm sticking to it! Relax mom! I'll bet you're more worried about this than the twins.

Sometimes its better not to know certain things. For instance, when I had to have my kidney removed, I told the doc I didn't want to hear any statistics I just wanted to go to surgery and not have any negative thoughts. I knew I had the best of the best team of docs at a premier cancer institute so I wasn't going to be burdened by useless information for which I had no control over because the kidney had to be removed period. Worked well for me. I believe a positive attitude is everything. I had no complications and was doing so well the doctors couldn't believe it. Today, I speak to kidney cancer patients and try to instill in them a positive attitude and hope.

Mom, you will be just fine and so will the twins. Keep positive thoughts.

The twins and you will be in my thoughts,

Keep us posted.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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Skay Junior Poster Offline I love YaBB 1G - SP1! Posts: 87 Evansdale, USA, usa, 323, 119, IA, Iowa Gender:	Re: Need another pep talk!!!! Reply #4 - May 15^th, 2007 at 8:46pm Kristen, You are definitely a worry wart. You have done everything you can to make sure the twins get thru this with flying colors. Don't think of the "what if's". Think positive. All of you will be in my prayers. Take care and godbless, Sharon
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twinsmom Experienced Poster Offline 16 year old twins with MM Posts: 128 hollis, USA, NH, New_Hampshire Gender:	Re: Need another pep talk!!!! Reply #5 - May 15^th, 2007 at 8:49pm Thank you, Sharon, Lore, Mary Grace and Mike!! I really appreciate your help!! Now back to my coping! Kristen
Back to top	"Come to the edge." "We can't. We're afraid." "Come to the edge." "We can't. We will fall!" "Come to the edge." And they came. And he pushed them. And they flew. by Guillaume Apollinaire IP Logged

moyamoi

Ex Member

Re: Need another pep talk!!!!
Reply #6 - May 16^th, 2007 at 3:39am

Hi Kristen,
I know where you are coming from - my oldest son who is autistic but does not have MM had to get a few teeth pulled under general anaesthetic a few weeks ago and I was a total nervous wreck!!

You are just being a mom!!

The twins will be fine - as the doctors are aware of their condition they will be able to monitor them extra close!
For what it's worth I have MM and have been under general anaesthetic several times now after I had my bypasses, in procedures that were not MM related and each time the anaesthetist was told of my condition and they talked to my original anaesthetist who had experience dealing with MM and they just ran my blood pressure a little bit higher than they would normally. You always worry about your kids - thats natural, but pull it together as it is a wasted effort to stress yourself out over it as it is still going to go ahead whether you are stressed or not!! Just think of the relief the twins will get with this problem fixed up for good. And if the wine doesn't help switch to spirits!!! A bit of southern comfort does wonderous things!!!
Moira

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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Need another pep talk!!!! Reply #7 - May 18^th, 2007 at 11:45pm Kristen~ Hope the tonsil removal goes well. Sounds like you've covered every base re: the needs us MM'er have. Try to 'chill out' I'll be thinking of you all on the 26th. Tons of LOVE, Linda A (LA)
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kotipup

Experienced Poster

Offline

My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: Need another pep talk!!!!
Reply #8 - May 27^th, 2007 at 1:07am

Hi, Kristen,

You are a worry wart!! Smiley

Just kidding! I worry about everything when it comes to Daphne, too. Even after she comes out of sedation from an MRI... the first thing I do is make sure she can still grab my finger with both hands (no strokes). It's awful.

I will definitely keep your girls in my prayers. I am sure they will make it through just fine. They will be in great hands at Boston.

Jenny

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