It was nice talking with you.We will keep your family in our prayers as you head for Boston for your son's Angi. and surgery.Please keep us posted.  I know all will go well and this will all be a past memory for your family.I'll be waiting to hear some good news.
Mary Grace

Dewski,

Blessings to you and your family.  From what I've read and heard, Dr. Scott is awesome!  Many here are a testimony of his wonderful talents and miracles...you are in great, experienced hands!  

All things considering, I'm glad to hear that your'e all "Dewing" good.    Give Michael a big huge hug from all of us... Everything will be just fine.

Take care,
Shan

p.s.  Dewski, after all is said and done, please dew take him "somewhere else" where he'd rather be... hee hee    I thought that was soooo cute! Children DO say the darndest things!  ;

Dewski,

My heart breaks for you and your wife as I read your post and remember back 15 months ago.  We had 2 weeks between my 17 year old daughter's diagnosis and surgery, so everything happened so quickly, I have a hard time remembering the specifics.  The night before Tara's first surgery,  we were TERRIFIED of what was to come the next day.  We  hadn't found this site, nor did we know of anyone who had been through this.  Despite the family and friends we had with us as we were close to home, we still felt very alone, and scared beyond description. 

Knowing what I know now, I will say that you are very blessed to be with Dr. Scott.  However, all the reassurance in the world won't change the fact that your son is having some pretty serious surgery this week.  Of course you're scared, but draw from your faith (it's what got us through!) and know that your MM family will have Michael, you and your wife in our thoughts and prayers.  I wish I could be there with you guys as you wait it out, but will definitely be there in spirit.  If you need a live voice to speak with as you're waiting, let me know and I'll send you our phone #, o.k.?

We'll be waiting to hear how things are going whenever you are able to give an update. Hugs to all of you!

Jill

Dewski,Nice to hear from you.I  know that there is no amount of reasurance that will make this any easier or less scary for you guys.I was never so frightened in my life as I was sitting in the waiting room two different times for the regular update.These updates calmed me for oh...about 5 minutes then I waited nervously for the next update.Thinking about you guys going through this really bring those memories close, it feels like it was yesterday.I know what you mean about just looking at your son so innocent and not knowing what lies ahead(that's not a bad thing).I remember lying in hte bed next to kathleen the night before surgery trying not to be nervouse of cry. The good news is this is the big step to haveing this all BEHIND you.Many many prayers and ((((HUGS))) to you all.If you guys need anyone to just talk to please feel free to call us.(If you don't still ahve my # I can PM it or e-mail it to you)
Mary and Kathleen

Good morning everyone,

I haven't had the time to log on lately.  I have been in the hospital with Michael for the last two days.

I do not have all the "verb-age" that so many of you dew, so please bear with me.   

I have met Dr. Scott three times now, (much smaller of a man than I imagined), and is as impressive as he is compassionate.  If I had to come up with a single word to describe him, (and I don't think I have ever called another man this before HAHAHA), he is simply a beautiful person.

Michael is dewing well, although there were some "surprises"  as well as a few complications. 

(Again, my words aren't right, so I hope I can make this understandable).  Dr. Scott viewed Michael's arteriogram and told us that Michael has extremely serious and advanced Moyamoya disease.  He has MM on both sides (which we knew) and also in the "rear" or "back" of his brain, as well as in his brain stem.  (My notes are still at the hospital).

Since Michael has previously had "2" strokes, he has limited use of his right hand, leg, and his mouth is partially paralyzed.  Dr. Scott's first thoughts was that Michael might be too far along to have any forseen fenefits of surgery, which crushed us all.   

He talked to us again that evening (and again the morning of his surgery), and said that weighing the pros and cons, NOT dewing any surgery would be detramental, as Michael would most certainly have more strokes.  He also told usthat the damage shown in the arteriogram shows that Michael has had MANY strokes on BOTH sides, not just the two we had known of.

He decided to operate on the right side of the brain, to try to ensure that Michael doesn't have any further damage to the left side of his body.  If he felt that Michael was strong enough during the surgery, he would continue on to the other side.

He stopped after the right side was done.     Even though Dr. Scott (who  told us that his policy on aspirin has changed over the last year) told us to keep Michael on his aspirin, Michael was simply bleeding too much on the table.  Dr. Scott said that he now would rather risk the blood loss vs. another stroke on the table.

He said that during this operation, his expactations are to lose between 1 to 2 ounces of blood.  Michael lost 8 ounces and only had one side done.

I am sure that we will talk to Dr. Scott much more in detail about the future of his surgeries, but for now, he simply said that we will wait "months" for the other side to be completed.

The other topic that we did nothing more but touch on (so far), is a THIRD surgery, that involves the rear section of the brain.  *Dr. Scott himself has only done the surgery three times in his lifetime.*  It has me and my wife freaked out beyond belief, although I keep telling myself that there simply is noone who knows more about this disease than Dr. Scott.

Michael is going to be released from ICU today, and is dewing quite well, being the steadfast trooper that he always is.   ;  <-- proud papa

I'll get back to all of you as soon as I can.  Please know what a help you have all been to us.

-= Dewski =-

Dewski, I'm so sorry to hear that you guys are having complications.AS you know we too had complications that couldn't have been predicted and I know how much it breaks your heart.Our kids are strong resiliant people and can really amaze us sometimes.I know your strength will help help Michael through this, and of course many many prayers from everyone.One sure thing is that Dr. Scott will do everything he can, and then some to get you guys through this and the very best outcome for Michael.Please call if I can help at all.Michael sounds like a very strong and determined young guy.Praying for a smooth recovery....
Mary Grace

Dewski wrote on Sep 21^st, 2005 at 9:10am:


Your comment made me smile ( )...although small in stature, he is a giant in, as you said, compassion, and  knowledge about MM.  He is a wonderful man, isn't he!!

I'm so sorry to hear of Michael's complications.  I never even imagined there would be possibility of a third surgery.  I was quite surprised when I read that.

You said that Dr. Scott has changed his policy on aspirin in the past year.  Would/Could you elaborate?e

In terms of the blood loss, I had a lot of blood loss after my second surgery - requiring transfusion(s).  I'm not sure how many units - I was quite out if it when they did it!  (My parents know, of course - but my memory is terrible!).

Did they say how long Michael's hospital stay will be? 

Anyway, continued prayers for Michael and your family as you continue through this journey.  Sending hugs  from Philadelphia....

-Shari

mg12061 wrote on Sep 21^st, 2005 at 10:01am:

God Bless you Mary,
you have been so understanding and helpful throughout this ordeal.  I swear, resilience is something that people with MM have unlike any other illness I know.  NOTHING keeps Michael down for long - nothing.  He was running a 102 temp, (he's normally 97.4).  Using Dr. Scott's words, his wounds were all "weeping" because his blood was so thin, he had a partial lung collapse and has lost 90%+ of his voice from the two thach tubes he had - one from the arteriogram and one from his surgery...  All of that, and he is more concerned over the tears of his mother than anything that is going on around him.   

Well, the "Day Room" wants to close their doors for the night, but now that weare back on the 9th floor, I will log back in the morning.

God Bless,

-= Dewski =-

Hi Dewski..

Yeah..Michael got to go "somewhere else!" He is just too cute...but like you said, no matter where he is, he'd rather be "somewhere else!"  .

Well, putting all humor aside, I'm happy to hear that Michael is out of the ICU. That means he is only getting better.  As mentioned many times before, Michael is under great care!..a true moyamoya specialist from what I've read/heard!   

We continue to keep you and your family in our  s and prayers... We may not always understand why we face the challenges that we do...but we're never given anything we can' t handle...believe it or not.    My boss once told me "Faith isn't Faith..unless it's all you got..." Some may disagree, but it made sense to me when I went through my MM surgery experience.

Take care, stay healthy and strong, and keep the FAITH..

Aloha,
Shan

Praying all is well and Michael is recovering.Waiting patiently for an update.
Mary Grace

STrantas wrote on Sep 21^st, 2005 at 1:33pm:


Yes he is and probably one of the most calm doctor's I have ever met.  Hehehe  With the pace he keeps, I would expect him to be so pumped up with coffee, and a bit on edge.   Hehehe

I'm sorry I haven't responded sooner to your post, but I was kicked out of the "day room" the other day.  (I guess the "day" ends @ 5:00)   

Quote:

As were we and for more than one reason.  We have talked to Dr. Scott a few more times and we aren't even going to concentrate on the third at this point.  He had mentioned it briefly when diagnosing the severity of his Moyamoya.  Even Dr. Scott has only performed it a few times.

Quote:


Before we even left NY state to come here, we noticed that Mikeman was bruising a LOT and very easily.  We made mention of it to Dr. Scott before we even came, because we thought perhaps Michael was getting too much aspirin.  He told us not to worry about it.

He told us that in the past he has reduced the amount of aspirin or even stopped an aspirin regiment all together depending on certain circumstances.  He is of the opinion now that given the choice of:

1.  Excessive bleeding on the table vs.
2.  Possible stroke on the table

that he is going to go with #1, even though there may be a risk for the need of a transfusion.  I have to agree with that.

Quote:


They are running lab work as I type this to determine if they are going to give him blood or not.  He lost approx. 8 ounces.  I am unsure whether that is alot for a person or not, but since Mikeman is all of 75 lbs., I can't imagine it's too healthy for him if he gets too low.

Quote:
 

Looks like we might be here for the weekend.
Anyway, continued prayers for Michael and your family as you continue through this journey.  Sending hugs   from Philadelphia.... [/quote]

Thank you very much.  Philadelphia huh?  Go Eagles!

-= Dewski =-

Dewski,

We truly appreciate you being able to keep us updated on Michael's progress.  Michael continues to be in our  s, and I'm sure he's doing all he can to get better so he can go "somewhere else"...maybe he'd even appreciate changing rooms ;..as long as it's "somewhere else" right?  hee hee  Please give him another big bear and tell him it's from all of his friends on the computer.  Please give your wife a big   too, as I'm sure she could use one, two, three...right about now too.

Take care,
Shan

Please excuse the breavity, but answering all the replies from you wonderful people would take more time than I have at the moment.  LOL

I am also trying very hard to hold back on the angles of bitterness that I am having about the different things that have gone wrong since we have been here.  There is no one person to blame, I guess I just pumped myself up for more than what we received oncewe got here.     Anyway...

Update(s):

Michael had a seizure yesterday unlike anything he has ever had before.  Multiply the worst seizure he has ever had times 1,000 and it might come close.  The doctor called it a "tonic clonic seizure".  Don't know the Dr.'s name at the moment, but that isn't important anyway. 

They have put him onmany different meds, including a tube into his stomach via his nasal cavity.  Adavan<sp> seemed to bring him around a bit, but it made him sleeeeeeeeeeeeeep, which honestly,  he needs.  He is on his 7th IV - 2 blew, 2 were pulled out my Mikeman, one just got old, and 2 didn't last an hour becausehis veins or so slow small.

So far, he has had two emergency CT scans, and he hasn't eaten anything at all in 9 days.  His electrolytes are all messed up.

Yet, this kid was giving everything he had this morning to sit up to get his mom's attention!!!!!

Yesterday, we got him up in a "wheeled chair", so that he was sitting up and looking around.  If we don't the doctor sayshe can get pnemonia,as he had a partial lung collapse and is still healing fromthat as well.

Ummmm,a urinary tract infection from the catheter, low sodium from the type of IV fluids they were giving him, a fever 99% of the time and they have thrown the medicine cabinet at him - from Tylenol to morphine and back.

After his seizure yesterday, (other than when they wake him for meds, blood draws, and CT scans), he slept for 18 hours.

Dr. Scott comes back in the AM and I sure hope he can grab this bull by the horns and get things going in the right direction.  They have been keeping him up-to-datethroughout the weekend, but I will still feel better when I see him in person.

Talk to you all again soon,

-= Dewski =-

(P.S.  PLEASE, if you are Believers, pray for this little boy.  It means SO MUCH!  Thankyou.)