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,

I know you have done a lot of research on MM.  We will keep you and Michael in our thoughts and prayers as you begin this part of the MM journey.

We wish you , Michael and your family the very best.

Please keep us posted on Michael's progress and if you need to just talk, please post or e-mail us as we are here to support you.  

Hugs,

Lore  

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!   [smiley=twocents.gif]

All things considering, I'm glad to hear that your'e all "Dewing" good.  ;)  Give Michael a big huge hug from all of us... [smiley=hug.gif] 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  [smiley=laugh.gif]  I thought that was soooo cute! Children DO say the darndest things!  ;;D

Thank you for your kind thoughts and much appreciated prayers.  I guess you could say that the waiting is over, huh?  LOL

Michael's angio is at 6AM tomorrow morning.  We ended up in Boston Friday, then basically killed the weekend in the hotel because the tests that they were gonna "dew" on Friday couldn't be done.  (VERY LONG STORY).

The fact that every room has internet access if you have a laptop is a definate plus!  HAHAHA

Special thanks to mg12061 and Shan for helping me keep my sanity this last week.  (Rich too!)  

I know that we are blessed to have the opportunity to have Dr. Scott as Michael's doctor, but I would be a hypocrate if I was to tell you that I am not scared to death for my little Mikeman.  As I sit here, I look over at him and he has no idea or even the slightest remote concept of the delicate surgery that he is about to go through.  

It is going to be a looooooooong night - no doubt.  I'll probably check out NASCAR.com of JAYSKI.com to catch up on the weekend events.   ;)

I'll dew my best to keep MOYAMOYA.com updated throughout the week.  I know that there are so many of you that have all ready gone through the things that we are about to.  I have asked as much as I can to learn as much as I can before tomorrow comes.  I guess now it's time for the "wait and see" part...

Thanks - to all of you.  I mean that from the bottom of my heart.

Talk to you all soon.

-= Dewski =-

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

   

Hi Dewski -

We are all thinking of Michael, and you and your wife today!  Sending hugs across the miles  [smiley=hug.gif]!  It's almost been 2 years since my surgeries with Dr. Scott.  And you are, indeed, very blessed to have Dr. Scott treating Michael!!  

One of the greatest things about being at CHB is knowing that all the nurses and doctors there are very much aware of MM....no need to explain....which is, in itself, very comforting.  You are in excellent hands there!  

Please give Michael a big [smiley=hug.gif] for me.  Keeping you and your family in my thoughts and prayers.

-Shari

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

Dewski,

Good luck tomorrow. I am sure that everyone will pull through just fine....sounds like you could all use a nice trip to the Adirondack....fall foliage is only weeks away.

Good luck,
Greg

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.  [smiley=huh.gif]

(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.   ;;D  <-- 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,

Bless your boy's wonderful heart!  He is a strong person I can tell.  Please know that your family and son are in my heart and prayers.  God will see you through this difficult time....I just know it!  Give him a hug for me, please.

Michelle

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,

So glad to hear from you.  I just emailed Mary Grace the other day asking if she heard from you...as you and Michael have been on our minds.  I'm not happy to hear about the complications; however, I feel you are in absolutely great hands!  May God work His miracles through Dr. Scott!  Michael is very tough...and is an inspiration to all of us!  I'm a big wimp myself, and to hear that children like Michael, Cara, Daphne, Megan, etc...are experiencing similar things that I am (sometimes even more!), truly inspires me!  (also makes me feel like an even bigger wimp!  :P hee hee)  

Well, all things considering, I'm so glad to hear from you..and know that Michael is recovering from his surgery.  Stay strong, keep the FAITH and know that we are here for you!  ;)  [smiley=hug.gif]  Please continue to let us know how he (and you) are doing.

Take care,
Shan

p.s. If you don't mind me asking, and when you do have the time, could you share with me/us Dr. Scott's thought on the policy on aspirin? I'm just curious.  [smiley=huh.gif]

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

I have met Dr. Scott three times now, (much smaller of a man than I imagined),

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  [smiley=hug.gif] from Philadelphia....

-Shari

Seachelles wrote on Sep 21^st, 2005 at 9:46am:

Dewski, Bless your boy's wonderful heart!  He is a strong person I can tell.  Please know that your family and son are in my heart and prayers.  God will see you through this difficult time....I just know it!  Give him a hug for me, please. Michelle

I'll make sure to give him an extra hug!   ;;D  He likes them - and often!  Hehehe

I WISH I had the strength and determination that Mikeman has.  He has got to be the most determined and unselfish boy I have ever known!  :-)

I know that God will see him through this as well.  I know this because His presence has been a HUGE part of this since the beginning.  It is through Him that we are where we are today.  And it is also through Him that is the ONLY way I could have made it this far without completely losing my mind.

We were just discharged from ICU about 20 minutes ago, and we are back on the 9th floor.  (Michael has wanted to come back to the 9th floor since we first left.  Hehehe)  I guess he got to go "somewhere else".  LOL

Thank you for all your prayers.  They are needed and much appreciated.

-= Dewski =-

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

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

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 =-

Dewski,

I am just catching up on this thread.  Wow...  you have been through so much.  I am so sorry that Michael has to wait for the second surgery, and that he has experienced complications.  Thank God, though, that he was able to have the right side done, and that he has a surgeon who is cautious, but who still is doing everything he can to treat him.

I am so glad you were able to be discharged from the ICU... I hope Michael's recovery goes smoothly from here on out.

Thanks for keeping us posted.  I know it must be hard to find time to write with everything you've been going through.  Michael is in my prayers.

Jenny

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!"  [smiley=laugh.gif].

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!  [smiley=thumb.gif]  

We continue to keep you and your family in our  [smiley=heart.gif]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

Been checking all morning waiting for a bit of good news.......I'm praying that you all had a good night and there's some progress for Michael.What a sweetheart worrying aobut his mom!!! Give that guy some (((((HUGS)))) boy he sure deserves it.I'm glad your out if ICU,I know how good it felt to be in a reg room,that ICU is not the best place to try and get some rest,it seems like the time of day never changes there.Praying still for your family.....
Mary Grace

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

What an amazing and strong person Michael is. My thoughts and prayers are with him and his parents. I hope for a good recovery and the strength through this MM journey. Please knoe we are all thinking about you!

Christy

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

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!!

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)   [smiley=laugh.gif]


Quote:

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.

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:

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

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:

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!).

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:

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

 

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  [smiley=hug.gif] from Philadelphia....[/quote]

Thank you very much.  Philadelphia huh?  Go Eagles!

-= Dewski =-

Dewski,
            I am just reading all of the posts. I am so sorry Michael has had complications. He really seems like a fighter I'm sure he will be fine. Being in a regular room helps alot I know how much we hated the ICU, couldn't wait to leave it. Hang in there and hopefully he won't have to be given more blood, I don't know what else to say. My heart breaks for you guys. Just keep praying as I am sure you are. My thoughts and prayers are with you all.
                                         Nancy [smiley=hug.gif]

Dewski,

We truly appreciate you being able to keep us updated on Michael's progress.  Michael continues to be in our  [smiley=heart.gif]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 ;;D..as long as it's "somewhere else" right?  hee hee  Please give him another big bear [smiley=hug.gif] and tell him it's from all of his friends on the computer. ;)  Please give your wife a big  [smiley=hug.gif] too, as I'm sure she could use one, two, three...right about now too. :D

Take care,
Shan

  Continued prayers for your family. Praying that recovery contiues steadily and you guys can be on your way home soon. Hey by the way did Michael get to see the huge aquarium??? Kathleen spent a lot of time sitting watching the fish and eating popcycles.It was a nice break from sitting in the room.  ((((HUGS)))) from the Grace family.
Mary Grace

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.)

Dewski,
            I am so very sorry things aren't going well for Michael just keep praying the prayers will bring him through. There is nothing more agravating than things going wrong and not living up to your expectations when your child is in the hospital, I had many, many years of living in the hospital with my son who had a heart disease and I so can relate, it just adds to the stress of it all, and most of the time there's nothing you can do. Please tell him our thoughts and prayers are with him and you and your wife too. He's a strong little man he'll be fine we have to believe that. You don't need to respond to any posts we know you've read them as long as we can support you thats all matters. You and your family hang in there. God Bless!!
                          Nancy [smiley=hug.gif]

Dewski,

I am so saddened to hear about the challenges Michael is facing. :-[   know that it is frustrating and confusing, and you and your wife must be emotionally drained.  However, I know that you both have extreme Faith...and yes, Michael continues to be our family's prayers.  I personally belive in prayers...It was FAITH that helped me make it through my ordeal, and FAITH which continues to keep me going through current challenges I'm facing...I will also keep Michael's medical team in our prayers as well, that they may be blessed with the knowlege and guidance to make the best decisions for your "Mikeman."  I hope that maybe other Boston patients may be able to provide you names of other doctors that helped care for them while there too..other than just their and your neurosurgeon, Dr. Scott.

We appreciate the updates, but we do understand that time/emotions may not allow for them.  Just know that we are here for you and your family...always!  [smiley=hug.gif]

Take care,
Shan
p.s.  I wanted to just mention that I had the same problems with IVs, so they eventually put in a central line, but I'm not sure what the ramifications about children having them.

Dewski -

I'm so sorry to hear that your Mikeman continues to go through difficulties.  I wish I could say something that would offer more support, but just know that Michael, and you and your wife continue to be in my thoughts and prayers.  As Nancy indicated, please dont feel obligated to respond to our posts...just know we are here to support you.  Sending continued hugs[smiley=hug.gif]  and  our [smiley=heart.gif] hearts are with you....

-Shari

 Gosh I hope the prayers help,I feel very helpless for you guys.It's so hard to sit by and watch your child go through all this.I'm sending strong prayers to your family and hopefully Dr. Scott and get things going in the right direction.I'm so sorry.  I think i told you Kathleen hada very hard time keeping IV"S it hurt more than anything to watch her go through getting a new one(especially knowing it won't last).Please know we are with you and pulling for Michael.I pray that you and your wife continue to ahve the strength to help him through this and that Dr. SCott has all the wisdom to get Michael back on track.Thank you for the updates,I know it's ahrd to find the time and energy to go thorugh it all again in your mind.
Mary Grace

Dewski,

I am so sorry that Michael is having so much trouble recovering from his surgery .  I don't know what to say, except that I will continue to pray for you guys.  

I hope things turn around for you soon.  Michael seems like a very strong person.  He is in my thoughts and prayers right now.

Jenny

Dewski,

It's hard to know the words to say as Michael, you and your wife are going through this.  I can only begin to imagine, through the heart of a parent, the crying, hand-wringing and praying you must be doing.  Please know that we're definitely saying our prayers for all of you, as well as for Dr. Scott and the staff at Boston Children's.  Hopefully tomorrow will bring you some good news.

Warmly,
Jill

I guess my post was a bit on the "bleak" side, huh?    I didn't know whether to be ticked [smiley=furious.gif] or if I should just bawl. [smiley=cry2.gif]  As usual, I came to mm.com, got it off of my chest and I feel better - eternal thank yous go out to all of you.  ;;D

Michael is improving.  They had him on a great deal of medications.  They cut back and/or discontinued a few of them.  He was on an anti-convulsant<sp> called Adavan that knocked his lights out, even with a 1/2 dose that he got yesterday.  This morning, he seems to be coming around - in stages.  I'll take that!   ::) [smiley=sleep.gif] [smiley=gocrazy.gif]  

We're going to take him down to the toy/activity room today.  (It's actually PT, so don't tell Mikeman   :-X ).  He will eat today, because we really really really need him to, and his output...  is outputting.  LOL

His fevers are gone (thank God), his upset stomach has stopped for roughly 16-18 hours (thank God), and we are hopeful that the tonic (severe) clonic (rigid stiffness followed by shaking) seizure was a one of a kind.  His electrolytes were all off, and once his Dr. pinpointed what needed to be done, he felt better and is acting better.  His salt levels were definately low and not are where they are supposed to be.

Michael's smile returned to us all last night.  :-)  That would be the Mystery Man's medicine for his parents.   ;)  We will get through this, it just may take a little longer than our original plans is all.   Hopefully things have turned the corner and we can get him back on his feet - well knees (LOL) in short order.

Thanks again for the ear and the shoulder.   :D

-= Dewski =-

Dewski-
So glad to hear Michael is turning a corner.  I hope each day brings marked improvements!  All three of you continue to be in my thoughts and prayers.
Chelsie

[smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif]!!!  All right Michael!!!  Way to go!

Dewski - even in your post you sound much more upbeat!  That's awesome that Michael has turned a corner for the better!

May he continue to have successes in his recovery!  Your entire family will continue to be in my thoughts and prayers!

-Shari

  I know the feeling "do I cry, or do I hit something? OR could I get away with just running and never stop?".I usually end up crying.
It's great news to hear that Michael may have turned that corner we were all praying for. What wonderful medacine a "SMILE" is!!! I remember the excitement over even Kahtleen's "crooked" smile. I pray those smiles get bigger and often. Thanks so much for the updates. Many (((HUGS))) and prayers still coming.
Mary Grace

Dewski,
             AWESOME NEWS!! a step in the right direction I know its not over yet but going the right way. Just keep praying and keep Michael fighting. That so great to here. PRAYERS......amazing.
                                 Nancy

Dewski,

I'm happy to hear of Michael's progress. I bet his smile the other night lit up the entire room!  ;;D  Your last post did sound a little better...and yes, we are here for you, so feel free to lean on us to share your thoughts, frustrations, etc..whatever it is...we're here for you!  We're all praying for "Mikeman" and those caring for him.

Take care,
Shan

I think BCH is going to raise our rates here shortly!   [smiley=laugh.gif]

It's Tuesday and Mikeman seems to take one step forward and then a step (sometimes two) back, but we are nothing if not persistant!!

He did manage a small piece of pizza last night and didn't get sick until this morning, so I'm sure SOME of it got to him.   :)  His two half-sisters drove 5 hours to see him for 3, and then drove another 5 hours back home!

He doesn't have a whole lot of strength or ambition at the moment and taking him down to the play room was just more than he could tolerate.   :(

This kid has got to get better!!!  (Besides, most of the adults here are Red Sox fans and telling them that you are from New York can be a HUGE mistake!)  LOL   ;)

The docs are coming down today to tell us what is next on the agenda.  I don't honestly know what could be left?.?.?.  

Talk to you all soon,

-= Dewski =-

I am so sorry to hear about Michael not doing so well. I can tell he is a fighter though and hope things get better soon. I just want you to know that i am thinking about you all and look forwrd to good news soon!!! I know its hard but stay positive you have an amazing son and I have faith in him!!!


Christy

Dewski wrote on Sep 27^th, 2005 at 1:43pm:

He did manage a small piece of pizza last night and didn't get sick until this morning, so I'm sure SOME of it got to him.

Do you think the anesthesia or the morphine is making him get sick?  I know that the longer they kept me on morphine the longer I didn't eat.  In fact, after my second surgery, I requested no morphine because I couldn't tolerate it.  It took a while for me to eat anything after my first surgery because I was affraid I was going to get sick.  So!  Maybe start with something that would be easier on his stomach?  Like, clear soup?  Crackers?  Just my opinion...

-Shari

I just want to say that you parents who stick with us MM patients are amazing.  You have such a difficult and scary job to support us, love us, and advocate for us.  I personally want to thank all the MM parents for being there for us.  [smiley=bow.gif]

Please give a hug to Michael and to your family members.  You are all close to my heart and in my thoughts.
Much love, Stephanie [smiley=hug.gif]

STrantas wrote on Sep 28^th, 2005 at 9:41am:

Do you think the anesthesia or the morphine is making him get sick?

The doctors are starting to rule that out a little, because it's been awhile since we was on it.  It's still a possibility though.  


Quote:

Maybe start with something that would be easier on his stomach?  Like, clear soup?  Crackers?  Just my opinion...

And a good opinion it is!  It's just that Mikeman eats too few things as it is..  They have been giving him mostly an electrolyte diet via his IV and nasal tube.

It appears that he has a few viral problems going on, so we just have to wait ti out until he improves.  {sigh}

It's been a WiLd RiDe so far!   :o [smiley=yikes.gif] [smiley=worried.gif]

-= Dewski =-

shgr wrote on Sep 28^th, 2005 at 9:57am:

I just want to say that you parents who stick with us MM patients are amazing.  You have such a difficult and scary job to support us, love us, and advocate for us.  I personally want to thank all the MM parents for being there for us.  [smiley=bow.gif] Please give a hug to Michael and to your family members.  You are all close to my heart and in my thoughts. Much love, Stephanie [smiley=hug.gif]

Stephanie,
Thank you so much for all of your kind words!   [smiley=blush.gif]  It is no "job" on my part.  I  [smiley=heart.gif] my little Mikeman to pieces.  He's dewing all the hard work, we just sit idly by and worry.  Hehe

-= Dewski =-

Hi Dewski,

I hope today is a step forward for the "Mikeman" "Mystery Man". I just love Michael's nicknames. I know they are names of love and affection.

I can tell you from experience that ANY major operation regardless of the illness/disease can take its tole on you.  It seems normal after such a traumatic experience to take two steps forward and one step back or two back and then go forward again. It can be very much like a roller coaster ride. As for getting sick, anesthesia and me do not get along at all.  I get violently ill with anesthesia.  In fact, I believe I may be allergic to one of the agents used in anesthesia.
 
I know Michael will get better. I just feel it.  He has been through a lot and yet I can see the positives.  Once the doctor's determined some things weren't right (like the low sodium level) Michael showed improvement. Sometimes it is hard to see the positives especially if they are ever so slight and one feels there have been more negatives than positives. On the other hand, sometimes it's those slight improvements we seem to cling to because they represent hope of improvement.

You are all in our thoughts and prayers and we want you to keep us posted on Michael's condition and we want you to feel free to come to us for support in those most frustrating times. Yes, please feel free to vent.  We've all been there and know how you feel and what you are going through. We are ALL here to support you and help you through this.

Hugs and prayers,

Lore    

Welcome to Thursday!   [smiley=laugh.gif]

WE SEE LIGHT AT THE END OF THE TUNNEL!!!

Gr8 day for Mikeman today!  He slept well, which is sorta a first for him since he has been here and ate some breakfast and lunch and kept it down!   [smiley=headbanger.gif]   [smiley=headbanger.gif]

It's SUPER  to see him eating and laughing.  We had a guitar player come into his room today.  I spent a few hours "painting his window".  Many families up here paint their children's windows to the hospital hallway.  I put Snoopy and Woodstock on Mikeman's window.   :D

Dr. Scott was even smiling at the news today.  Hehehe  Dr. Scott said to give Mikeman 24 hours and see if he continues in the right direction.  Then we can talk about going home.

Mikeman, or course, wants to go home yesterday and he's had enough of being poked, plugged in, syphoned, taped, stuck, rolled over, flashlights in his face, having his "arm hugged"...  He definately wants to "be somewhere else".  At this point, I know that ANYwhere else would dew.  LOL   ;)

I think the wife and I are about ready too.  After New England's wintery snows are completely over, we will probably head back here again but we really need to go home.  I miss my other son.

Take it light and I'll talk to you all again soon.

-= Dewski =-
 

Simply wonderful news. Your going home soon will be in my thoughts.  Your son sounds like a genuine trooper.
Take lots of care,
Stephanie

Awesome news, Dewski!  Your feeling of relief must be immense, and I'm so glad to hear Michael had a good day today . . . we'll continue saying our prayers and hoping for another good one tomorrow!

[smiley=hug.gif], Jill

Awesome news, Dewski!  Your post brought a smile to my face!  Thank you for keeping us updated....hopefully, by the time you read this, you will be packing your bags to get ready to go home!  Well done, Mikeman!

-Shari

OH Mikeman you are amazing!! What a strong guy!! Your post brought tears to my eyes, tears of joy.It brings back so many memories of being in the same place you guys are.Feeling hope again seeing that
" light".I'm so thrilled for you all.The prayers won't end I'll continue,prayers for the strength everyone needs to get home.How's your son doing at home? I know it's very hard on the other children left at home.Thanks for such a happy start to my day!
Mary grace

Dewski,

Simply marvelous news! That "going home" is the key to Mikeman's improvement.  What a trooper he is. It's just overwhelmingly awesome.  Mikeman is so fortunate to have you for a father and caregiver. You have worked hard to get Mikeman the best treatment and care. My hat goes off to you. You are very special.

I like the painting of the window. That has to be very special for Mikeman.  I'll bet that is really something to see.  I remember when my son was young and he was hospitalized and quarantined for a rare infection. My husband and I drove up to the hospital and saw a sign in his hospital room window and it read "Help! Bring pizza to room 320!" We laughed and knew our son was feeling much better. The nurses actually helped our son write the SOS and the nurses had a pizza party for him later that evening.

Keep us posted on Mikeman's progress.  It looks real positive for him. I know you all will be glad to go home and be with your other son.  Hang in there!

Hugs,

Lore

That is wonderful news, Dewski.  I am so glad that Michael is doing better  ;;D

I hope you get to go home soon!

[smiley=sayyes.gif]  ;;D  [smiley=sayyes.gif]  ;;D  

What a way for me to start my day, Dewski!  I'm so ecstactic to hear that Mikeman is doing well and may be on his way home!  We'll continue to keep him in our prayers..as well as you, your wife and family.  I know it hasn't been easy, but it sounds like things are now heading in the right direction.  ;)  Thanks so much for allowing us to be a part of Michael's surgery experience.  We know that it's a somewhat personal experience, nonetheless, we hope that by sharing our own personal experiences (especially from those with children w/MM) we were able to bring you comfort and support.

Stay strong...keep the FAITH...and know that we are all here for you!  Thanks, again, for the wonderful news!

Take care,
Shan

This is absolutely great news, Dewski!!!!  I had a tear in my eye when I read your most recent post.  I almost felt like I was there.  Hugs to your son and all of you.  :)

Michelle

Well, we're home!  I wish he was feeling better.  He's got us worried. [smiley=worried.gif]

He had a reaction of some sort to a supplement that they gave him this morning right B4 we left.  He has hives all over and has gotten sick to his stomach a few times.   :(  I'm hoping that it will just work through his system.  

Me and the Mrs. are NO DOUBT going to cRaSh tonight.  I think we have found a new definition for the word "pooped".   [smiley=laugh.gif]

Thank you all for keeping me going while we were in Boston!

-= Dewski =-

Home Sweet Home.  Like Dorothy said "There's no place like home..."   ;;D

You and the wife deserve a good night's rest... [smiley=sleep.gif] And hopefully Michael will also feel more comfortable at home in his own bed and also get some rest.  

Thanks again for allowing us to be a part of Michael's surgery experience. We continue to pray for his recovery, and for continued strength and comfort for you, your wife and family... [smiley=hug.gif]

Take care,
Shan

Deweski,

I'm sorry to hear about Mikeman's reaction to the supplement.  If it's not one thing is seems to be another. Hopefully, it will work it's way out of his system and not linger.

I know you and your wife must be very glad to be home and for Mikeman to be back in familiar surroundings. I know it has been a stressful and exhausting experience for you all.  Hopefully you can all get some needed rest and relaxation.

Keep us posted on Mikeman's progress.  

Hugs,

Lore



   

Welcome home!  I remember after my 2 weeks at BCH I was absolutely ready to go home!  Even through the long 5-hour ride home I started feeling better....even just to get some fresh air!

Sorry to hear that Michael is reacting badly to his supplement.  I hope it works through his system quickly.

Also, thank-you, Dewski, for allowing us to support you through Michael's surgery!

-Shari

Dewski,

Welcome home to you, the Mrs. and Mikeman....there is nothing like being in your own bed to help speed recovery. ..not to mention, hopefully give mom and dad a good night sleep.

Greg

 Wow I'm so glad you guys are home!!! I do understnad how exciting that is but also how scary it can be dealing with any of the ups and downs of recovery.I was kind of glad we were sent to a rehab hospital.Getting home and back to something that resembles "normal"( hahahha... ) is great though.I hope everything goes smooth and that Michael gets strong and healthy.I hope recovery for mom and dad goes well too....Keep us posted.Thanks so much for all the updates throughout your stay in Boston.
Mary Grace