This is Her Story of Peace, Love, and Strength

Ride Across America!

June 18, 2011

Written by thembricks

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WEDNESDAY, JUNE 15, 2011 5:48 PM, MDT
Ok! 3 hours of SOLID sleep!!!
I’m a New Man!!  I’m heading back up to the P.C.M.C. 2nd floor, the C.I.C.U., Home to a shockingly unexpected number of ……. SUPER-HERO’S!!!
The patients, the parents, and the slew of folks up there remind me of some ‘secret society’ of Super Hero’s!  And Thank God for them….. the nurses; the doctors; the tech’s; everyone up there who helps these kids and their families.  But the kids!…… they are the Top of the Heap. They are all so inspiring.
But I wanted to tell everyone about Dr. Eric Scaife and his in incredible journey he is about to take: Dr. Scaife was at home with his family on the day our MiaBella went into cardiac arrest. Within minutes from receiving the call, Eric was in Mia’s room and placing the ecmo canula’s and tubes into my daughter’s neck and into her heart, saving my daughter’s life and giving us the chance to receive the next miracle, which, unbeknownst to us, was a heart almost exactly 7 days later.  To be sure, there were many other people in that room that helped “Save” my daughter’s life, like the wonderful Drew, and Torrie (who took a “shower”!  I can laugh about it now), who gave her the life-saving compressions for 48 minutes! and many, more than I can mention.  They are ALL on my Super-Hero list.
Oh, I digress….(not necessarily a surprise!)…. anyway, in 3 days, Dr. Scaife and his team begin a 24 hour a day Race Across America, on bicycles, in relay form.  It is part of the Team Donate Life, founded in 2004-5; history and story here: http://www.teamdonatelife.com/history.html
His team is called The Liverators (He’s on the Liver Transplant team at P.C.M.C.), and he is dedicating the ride to MiaBella!! in her honor!
You can find details about the race and the fundraising efforts here:
You can find his name, under the Liverators team roster, and click on his name “Eric Scaife”, or you can also try this:
Once again, another Hero to Thank! Thank you, Eric, for everything you have done for Mia and for us, AND for the many patients and kids that you help.
I once rode a bike across France, and am jealous at the idea of riding across our own great country! So ‘Good Luck’! Have a Blast! and “Rubber Side Down!”, as they say! See you when you return!  Mia will be waiting to thank you herself. 😉

 

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Sleep

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WEDNESDAY, JUNE 15, 2011 2:22 PM, MDT

The days are going fast now……

The nights too.
But sleep and what they call “I.C.U. Psycosis” is proving elusive and invasive, in that order.
Mia has had a persistent high W.B.C., and fever.  Both indications of an infection or other problem.  So, we took a C.T…………
Her lung condition/disease is (in fact) worse than we thought.  The daily chest radiographs seemed to show improvement? and were not eliciting the kind of concern that the C.T. reveals is warranted. Her left lung is mostly occluded…… with schmutz: blood? fluid? unidentified infection? Whatever, it doesn’t matter. They need to clear. They need to heal. So we’ve stepped up work with the Pulmonary & Respiratory Therapy folks. She’s getting to wear a ‘vest’ four times a day that jiggles and sends shock waves into her chest and lungs to try to break up the schmutz. She looks like a scuba diver on a vibrating bed when it’s on.  She’s awake enough and remembers that I told her we need to get the bad stuff out, or she can’t take out the endotracheal tube. So, in pure Mia fashion, she keeps asking every few minutes that they suction and try to get more stuff out of her lungs.  The process is uncomfortable, and involves running a suction tube down the endotrach. tube into the lungs…. it feels like your air gets cut off, and then she has to ‘cough’ to dislodge anything,and the thin tube is pulled slowly back up and out…. hopefully bringing anything it ‘grabbed’ with it.  It looks aweful. But, Mia has embraced it fully.  The nurses are all in love with her. She is so helpful.  No surprise.
Secondly, we identified a very large blood clot….. in her Inferior Vena Cava.  This has resulted in a persistent swelling of her lower right leg and foot, and may be contributing to her overall discomfort. But perhaps not? It does, however, bring extremely serious concern and discomfort to me. This, of course, poses a significant risk to the lungs, or elsewhere ‘downstream’. This just ‘bought’ us 6 weeks of additional i.v. antibiotics, and at least six months of anti-coagulation therapy……. and very tender steps.
Thirdly, there is also a venous thrombus or phlebitis (poss clot?) in her left arm, which is definitely causing her discomfort.
The right arm is recovering from the i.v. incident that occured durring surgery, and she’s mostly just tender over the entire bicep/upper arm area with one gnarly bruise that she can be proud of.
Her p.t. began, but we can only work with her arms right now.  She is extremely week, and will need to relearn now to do certain things.  This is obvious.
They really weren’t kidding when they told us that she still had a long road to go? huh?  no joke.
But!! her personality is STILL there! and her fiesty attitude is coming out!  Today I had to stop and remind myself that a week ago I would have given ANYthing to actually interact with my daughter again! I would have ‘killed’ to see her eyes open and to know we could still communicate!…….. and now, with out words, we are. 🙂   She likes her mouth neutralized and her teeth brushed! (I think it’s because she hates the taste of the anti-yeast rinse she gets several times a day!), and she LOVES to have her arms and legs rubbed with a cold wash cloth, and her feet massaged!
Did I tell you how bad she hates the Chuck Taylor’s?? Yea,…… she does. She kicks her feet when you try to put them on! Ha!
And yesterday when this lovely young lady who specializes in Music Therapy came in to play Mia some music on her guitar, Mia told her she didn’t want to hear it!! Ha!~ But she changed her mind, as long as she didn’t play Taylor Swift (which I don’t understand, because she used to love Taylor Swift??).  Well, everyone in the room, EXCEPT Mia, was in tears within a few minutes, and I had to excuse myself before my nose ran off my chin! sick!  But, her voice was so beautiful, and it pulled all the emotions out of Heidi, me, even the nurse! We were all in tears! How’s THAT for supporting Mia?? It’s ok. Mia just thought we were all dumb.
This girl is so tough. A bigger heart, for sure, than most. NOt just a new one. And, if medicine and technology can help her through this, as it has so far, and if we can remember our Faith, I know that Mia will never, ever quit.  She’s proven that to me now. I’m such a wuss when compared to my 11 year old daughter. Ha! I love it.
So, she’s doing so much better……. as you can see.
And so it seems so unfair, after coming this far, to be faced with such major hurdles!  Still, what did I expect???  I expected this! I was supposed to know! Right???……  I guess so.
I can only afford so much time given to negative vibes and depressed pondering. The “Why?” is the stupidest question in the world….. and the first one out of our mouths when things like this happen.
I’m beginning to sound like a broken record…… and many believe I am well on my own way into the world of ICU Psychosis as well.
So, Thank you, Dr. Coor, Julie-G, Marty/Nicki, friends (too many to name), cousins, family, one and all- for your support of Heidi, Eli, and me, not just our daughter.  And thanks to Heidi, Sue/Pete, Bob/Jan, for holding the “Family” unit together.  She’s been staying with Eli, and I’ve stayed with Mia.  We both realize how important it is that Eli NOT be shipped all over Salt Lake, or elsewhere, and that he remain in-touch with Mia and THEMBricks as a Family Unit.
Yea…. last night I wanted to punch the wall. I wanted to punch something. I just want to POUND the disease and clot and anything that is hurting my daughter!!   ……. and I can’t.
I came home to sleep.
Faith.
tbrick of THEMBricks

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Tuesday morning

Written by thembricks

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TUESDAY, JUNE 14, 2011 8:03 AM, MDT
Good Morning everyone.
just a quick note: we’re talking about trying to get Mia out of the bed and into a P.T. chair today……..
Hopefully we’ll have some positive updates later on.
Keep cheering and praying for cleaner lungs, and No infections!
I keep reminding her of where she is, and that she is ‘safe’. The drugs make her forget every time she dozes off.  Then she awakens scared and doesn’t know where she is? or why?
Much thanks for the love and well-wishes.  You are all amazing people, and we are fortunate to have you in our lives.
More later!
go swish.

 

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"Attitude is Everything"

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TUESDAY, JUNE 14, 2011 12:02 AM, MDT
Ok, You’ve heard of the ‘Slow Boat to China’?  Well, we’re on the Slow Boat to Recovery!

That means, despite the rapid onset and progression of Mia’s Miracle Ride (sounds like and reminds me of that stupid Bart Simpson ride at Universal Studios…….. I ended up having to close my eyes, look backwards, and tried not to puke all over my son, who thought it was the best ride in the world!  yea….. about that much fun), this ride is proving to be a slow one. And that is fine. Well, it’s not exactly ‘fine’, but it is the way it is. So, we CHOOSE to be fine with it. It’s reality.
Again, I don’t know about all of you, but because Mia went from mostly ‘normal’ kid, to puking, to myocarditis, to heart block and V. tach, to complete cardiac arrest, to ecmo heart and lung bypass, to heart transplant list, to transplant, to off ecmo, to incredible post op condition, to increased lung disease and schmutz, to up and down, to essentially ‘Today’……. all in about 2 weeks!!….. I think we all got used to such a frantic pace that we subconsciously thought or expected the recovery to progress at the same Go Big or Go Home pace!
And, we are all beginning to see and accept what those with more experience have known all along. That Mia’s recovery will be long, slower than any of us want!, and checkered with those small baby steps backward, in between the forward steps and jumps.
So, now it’s a matter of trying to stay on-top of the pain; keeping her comfortable enough that she doesn’t panic and fight the respirator, but aware and awake enough so that she can help us get the schmutz out of her lungs!
Interesting tid-bits:
1. She is DONE with her new purple Chuck Taylor’s!! We keep putting them on her throughout the day to help prevent ‘drop foot’, and the shortening of the achille’s tendon, and she has figured out she HATES it.  😉  When she feels me trying to put them on she begins moving and trying to shake her foot so I can’t get them on!  the little stink!
In the same vein, she dislikes the leg ‘boots’ than alternatively squeeze her calves with air bags.  She tries to kick those off, too.
*You should have SEEn her face and the scrunched up forhead a few minutes ago when I put them back on.  2 hours later she convinced the nurse to get ’em off!  Now, she’s sleeping like a log. Who sleeps in their shoes, anyway?? duh, dad!
2. She LOVES to have her feet and legs massaged and rubbed! We use a special recipe of lotions and potions to massage her little toes and bipedal traveling pads! And when you’re done, she wiggles her feet or toes, meaning “No! Don’t Stop yet!!” no matter how long you’ve been doing it!
3. Froggie. Yep, she LOVES the Frog pose and leg position. Every nurse and P.T. out there will know exactly of what I speak. What is it Shakira says? “The Hips Don’t Lie”? Mia’s going to have some pretty sore hips when it comes time to walk again!  We move her legs every 15 minutes to try and reposition them, and she just plows her way back to Froggy pose!
4.  She digs the Closys mouth swab sessions. Of course. Smart girl.
5.  Mom painted her finger nails today, to match the sparkly glitter Dr. Angela put on her toes a week or so ago. (Thanks Angie! They still look awesome!) You know you’re important (and lucky!) when you’ve got plastic surgeons doing your pedicures!
6.  If you ask Mia when she wants to leave the hospital, she’d probably say “yesterday!”, but we’ll settle for “when its right”.
7.  She continues to get incredible notes, cards, emails, and well-wishes from the most amazing people!  And the love and healing energy you are all sending up her way we are sharing with the other beautiful Angels here in this place they call the C.I.C.U. and P.I.C.U. They are all so incredibly beautiful, and they all deserve a second chance, like Mia.  But they all won’t get one.  And this humbling reality is heavy and difficult to accept.
If you ever think your life ‘sucks’, ….. come on up, and spend some time in a p.i.c.u., or any I.C.U., for that matter.  If your perspective on life and your blessings doesn’t shift…… then you’re either a first rate dork, or you’re already dead. Or, you’ve already figured out how incredibly blessed you are and an enlightened soul? I hope it’s the latter.
Me? I was slightly on the dork side……. but I figured it out pretty quickly. And now I stand in awe to the power of love, the importance of prayer and faith, the miracle of medicine, and the irreplaceable beauty of the people that live on these floors and in hospitals all over the world. They’re called Nurses, and Doctors, and Tech’s, and the list goes on.
And the ice-cream in the Nutrition Room is pretty tasty, too! And, just to tell you, there’s an ENDless supply of ‘truck stop coffee’ to rot yer gut!
Thanks Annette, for the hair cut tonight. I owe you. You’re a sweetie.
And once again, Staff Sergeant Jordan Goers and all the rest of the men of 2nd Platoon, Bravo Battery, 2nd Battalion 8th Field Artillery Regiment, have gone and blown us all away! I can’t wait to show you all the pictures they sent.  If I can figure out how to use this computer, I’ll upload the photo.
Tomorrow: we may try to get her up into a physical therapy chair? That would be cool.  And maybe some in-room jammin with the Music Therapy folks? Time for some Dylan, if you ask me.
Have a great day, beautiful people!!
(Dr. Ngan just told me I have to go to sleep. Dr.’s orders. G’nite.)

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What do you mean, She's not Better Yet??

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SATURDAY, JUNE 11, 2011 4:41 PM, MDT
Ok, ok,……… ok.

I know I should know better.  I just had my own little anoxic moment early this morning after a long, difficult night, and I spewed a little toxic energy. Well, it happens.  Sorry that some of you had to read it.
It’s just very had to watch, helpless…… doing everything I could to help the beautiful doctors and nurses throughout the night…… and not really able to do ANYthing!  I found myself wishing she’d need to have the sheets changed, or whatever. I can do that! I’m getting GOOD at that!
Why is it so hard to remember that only 6 days ago my daughter received the Miracle of Life?? Ha!  This is a lesson for ALL of US to learn!!  Spend as MUCH time focusing on the GOOD things that come; the GIFTS that we are given; the BLESSINGS we receive; and LESS on the negative, depressing, and backward slides!   Sometimes, it seems that the Snowball Effect that starts rolling when good things happen, or when we begin to ride that Positive Wave, we forget to lookout for the shallow reef! Those darn ‘snow-snakes’ in what appeared to be a field of fresh pow!  And when you hit one, when the setback or even lateral path interrupts the forward ‘expected’ progress, we can be (and I was) throne off balance and end up with a facefull of cold, hard, reality at best, or even a complete ‘garage sale’, injury inducing event at the worst?!  If we haven’t braced ourselves (not with pessimism and gloomy projection) but with excited optimism at the next, unexpected, unforseen challenge, then you can stay standing, and even plow on through the minor speed bump!  Welcome to my overly imaginative mind.  I love analogies, allegories, and similitudes!  Sincerely.
Anyway…..ok, so here’s the Mantra for the Day: Poop happens! And if you live long enough, totally engaged, and walk around enough, you’re destined to get a little between the toes! Especially if you walk barefoot. Or with those new 5 toed shoes?  So, just be ready to wipe it off and keep on running!
With this in mind, (and after multiple attempts to help her clear her lungs), we’ve decided to give her a break! She needs some sleep. So we’re letting her sleep a little, and recover her strength slowly, and we’ll get the lungs cleared up over time.  The goal of getting her off the endo.tube built up our personal expectations and didn’t allow for the presence of a few ‘snow snakes’ in the form of lung-schmutz.
But No Worries!! We’re back on track!
Miss MiaBella will heal.
It will take time.
After the Miracle we were granted, we just expected it to keep on rolling.  And, we will.  At the right pace.
So don’t worry about Mia any more than you already do! She’s being taken care of.
I just read the latest posts to the Guestbook, and I absolutely Love the sweet, encouraging words from all of you young ladies! Mia is just the luckiest kid in the world to have such amazing friends!  I can’t wait to begin reading them to her again.  Maybe tomorrow.  For now, she needs to sleep!
And thank you to Debra. Who’s words made me cry…. but gave me hope, too.  Can’t wait to meet you someday.  The other day when Brian Corralles held the advancement test, and presented the Dan Belts to Mia’s friends and fellow-candidates, I was moved to tears watching the red belts dance their way through one of the forms.  I didn’t even have to close my eyes and I can ‘see’ my Mia completing it in my mind. So beautiful. So powerful. So smooth and confident.  I was afraid I would never see it again.  And that is wrong. You are proof. And so will be Mia.
I also wanted to thank all our ‘Family’ of Friends all over the world.  In Germany, Mia has ‘Family’ who are hurting. And we want you all to know we tell her about you and your words. Love to the ‘ReAL Soccer team, Holzkirchen roster’!  We’ll see you soon.
Benedizioni and Grazie! to the Profaizer and Bertagnolli families in Italy! To Heidi’s cousins in Australia.
To the monks in Tibet who prayed and meditated over Mia; to all the climbers at the Divisional Indoor Climbing Championships held today in Salt Lake City at Momentum, and Mel and Jeff, who all had feather’s put into their hair, and wrote “Mia” on their arms in tribute as they climbed; to the Vertical World climbing team from Seattle, and those from California, who didn’t even know Mia, but participated anyway because they wanted to show their support and send her more love! Again, to the soldiers in Afgahnistan, and my buddies down in Alexandra, So. Island, N.Z.; to the folks up around Ruby Lake, B.C. and in Vancouver, we love you, too.  To so many lovely people, all over this incredible country, and over this beautiful world…… we thank you and we love you, too.  To those of you who have been close enough to lay your hands upon Mia and give her a blessing, a prayer, and your energy.  To our parents, and their friends, all over the world (and in Denver!) who are praying and sending their love. To all of you who care about Mia and who we have never met. We thank you. And we will do everything we can to honor the love, the positive energy, and the prayers of Faith, by staying as positive as we can. And in doing all we can NOT to forget the miracles we have already received!!
All I need to do is read your words, and feel your energy and prayers, and I am once again lifted!  And to remember my own gratefulness, my own faith in the miracle gift my daughter has already received.
And as we sachet down this new little path we’re now on, I’ll try not to focus too long upon the warm, disconcerting feeling between my toes.
oxo (that’s a kiss sandwhich, between two hugs)
tbrick of THEMBricks
ps. I ran out of Closys, and can you believe they don’t have B.Soda here in the hospital??? Incredible! 😉 Stock up! for just these times!

 

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"Please, don't sing, Daddy."

Written by thembricks

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FRIDAY, JUNE 10, 2011 2:04 AM, MDT
That little Stinker?!! WHO does she think she is??

For 4 days we have waited patiently for Miss Mia to follow any verbal commands. She’s been on some pretty heavy drugs and it’s been very difficult to assess her neurologic condition.
Rumor has it that she lifted her feet for Dr. Kaza (her surgeon), and did something else for a nurse?  But, as for her B.F.D?? …… Nothing. Nada. Zilch. Well, that’s not exactly true.  She does open her eyes for me, and maybe I haven’t really wanted to push her, because I can see how exhausted this kid is! But today, we all felt that we’d like to get a better understanding of her neurologic condition……. so, we decided to ‘press’ her a little more for some kind of reaction or response to specific questions.
I asked her to squeeze my hand. She didn’t. I began asking more intently, with increased volume and intensity, but nothing other than open eyes did I get.
As she grew more and more restless, biting down on her endotracheal tube and acting agitated, I grew more concerned and did what any good Father would do.  I asked her if she wanted me to sing to her? To which she, for the first time since being admitted, DEFINITIVELY shook her head “No!” ??!!  What is THAT??
I was so surprised and ecstatic at her response that I immediately turned to see if the nurses and doctors had seen it?? But then, I realized what she had ‘said’?! and my elation at her positively negative response made me turn back to her and say, “Mia?! Are you sure? Don’t you want your Daddy to sing to you??” (pleadingly)…… to which I got the same darn definitive head shake!  That little poo.  I’ve never felt better being told to stop singing. So, the kid seems to either have a serious A.B.I. (according to me), or she’s sounding like she’s ‘All There’, (as Heidi and most of the doc’s think).  😉
Everyone else in the room and CICU seemed to think it was about as funny as my own family did when they heard about it.  But I asked the nurses all to step out of the room, that I needed a couple of private words with my daughter! …… but they wouldn’t do it.
So?…… no songs tonight! oh, well?  How many times can you hear “Down our Way”, “Birmingham Jail (Down in the Valley)”, “You are my Sunshine”, “The Sweatheart of Sigma Chi”, and “Bullet in My Shoulder”??  And I think she’s absolutely SICK of “It’s Nappy Nurtle Time, It’s Jami Jurtle time”!! (sorry Pammy)  Poor kid! All she wants to do is have that damn tube out of her throat and get out of that bed!!
No, but seriously, it’s been a couple of slow days.  We’ve been working hard, sometimes a bit concerned, but mostly not. Just working hard to help her clear her lungs and watching her vital signs for any sign of problems.  She’s been to hell and back, people. Or, some say Heaven. Maybe it’s safe to say she’s been to both, but she’s still here with us now, and I am still the happiest, most grateful dad on the planet.
She’s had 3 Broncho-scopes in 4 days; and we began using this really cool machine called a broncho-tron (I think??) that really helps to bring out the dried blood and other secretions in her lungs. As Mia continues to ‘fight’ and work to clear her lungs of the schmutz from this whole ordeal, we continue to cheer her on.
We have a very ‘soft’ goal of extubation by the end of this weekend. (!!) And we can’t WAIT to be able to question her further about her screwed up musical preferences. 😉
Tonight, Heidi and I joined the rest of my family and my nephews and nieces in celebrating my parents 50th Wedding Anniversary on June 7th!!  We all had dinner together at my folks house, and were lucky enough to have Sue and Pete Welsh, (Heidi’s Mom and Step-Dad), and Uncle Roger Russell there too. We all toasted Mia’s Grandparents long-standing marital success!! It seems stubbornness and perseverance in the face of overwhelming odds weren’t invented by our little Miss Mia after all?? ok, just kidding. 😉
And we were all left in silent reflection when Mom announced, with a toast to herself and her not-so-young ex-cadet, “50 years, and nary a cross word or quarrel!!”.  We all soon recovered and realized she was only joking and we could relax on the idea that Mom had completely lost her memory.
So, ………. this is the update for the last two days.  Hopeful. Optimistic forward progress, with chances of setback.  She continues to battle, and it’s obvious the drugs have skewed her musical taste, if not her entire sense who’s important?! But, we are still very pleased with our current condition.  She continues to play with a very SLIGHT fever, and we are watching this very carefully.
ok. I am very tired. Can’t you tell? I’m rambling. And it continues…..we are loving each and every message of love and support Mia continues to receive.  Thank you again.
We are working on a website or blog site in which we can move all of this wonderful support, so that we can add more photos and have more flexibility with the entire format.  Once again, the indomitable Brian Corrales, Soo Bahk Do Instructor, and apparent computer wizard at the same time, is setting this up. We thank him for all he has done for Mia and for our family.
I will try harder to find time to think or write when my brain is a bit more clear……. and hopefully every day.  I have been made aware of my responsibilities from my well-intentioned, if not pesky big brother, David. 😉 jk big bro.  so, sue me.
Good Night everyone! We’ll hope she continues to clear her  lungs, and we look forward to the day when we can take that darn tube out of her throat and she can explain why in the heck she doesn’t like my singing??  (Can you tell I’m bugged?? I’ve only mentioned this like 5 times!)
ps. It would be impossible for me to thank each and every one of you for your kind and heartfelt words, but I just wanted to acknowledge a special group of men and women over in Afghanistan, fellow American soldiers of Jordan Goers (I’m sorry, I don’t remember your rank), who are pulling for our Mia. Thank you for your service and your sacrifice. May you all come home safe and sound to your own families, and I hope you get a chance to meet our MiaBella for yourself one day and she can thank you herself. And I’ll give you a free toothbrush and floss for the effort.
Peace, Out.     T of T.H.E.M.Bricks

 

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Go Big or Go Home!!!

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TUESDAY, JUNE 7, 2011 7:57 PM, MDT
Mia’s incredible team of doctors, surgeons, nurses, etc, did a BANG UP Job on our little Mia this morning!

Before she went in at 7:30 to have her surgical site ‘closed’, we anticipated that she would be moved to what they call “V-V ecmo”, meaning that they would simply move the bypass tubes to continue supporting and oxygenating the blood, but her new heart would have to do it’s job. Even though the possibility existed, depending upon the condition of her lungs at the time of surgery, that she could come off ecmo, I did not expect it. I figured it was enough to ask that her chest be closed and we get one Really Big Baby Step forward toward taking my girl home!
Well, between the excellent work done by her Team and Mia’s fiesty “Never Give Up” spirit, they took her off ecmo at 11:59am and she has been able to remain off it to this point and oxygenating her blood through her lungs with the help of a respirator!   ……. this is a GOOD thing! 🙂  Dr. Kaza, her wonderful surgeon, described her as having a “snappy” heart!!  One Snappy Heart!!  ……. I like that.
As the sedation is lowered, she should begin to draw her own breaths and the machine support can be lessened over time.
How ’bout that??     Again,……. surreal.  She’s such a tough kid. Her perseverance and innate character have definitely been part of why she is still with us today. That, and the multitude of miracles,…. sometimes several in one day!, ……. and ultimately, by the Grace of God and Blessings of her Creator, The Great Spirit, The Eye in the Sky, The Power of Love, The Largest of All Kahuna’s, The Big Cheese, and the Big Elmo in the Sky! (That Big Giggly Dude or Dudette that makes it rain and thunder when he belly-laughs!) I’m thinking Jerry put in a good word? as well as ENergy and Prayers from ALL of YOU!!……could have been Zeus?! Probably not, but my Greek friends should like that. You’re Welcome, Jimmy. 😉
MiaBella Brickey, age 11, is looking like a solid bet to make 12 in twenty-four days!!
We continue to be humbled by the gifts, the miracles, the love, and are actually in a place where we can laugh (as well as cry!) and begin to savor the essence of what we have been through……. and continue to go through.  It may be a bit trite, but in the words of Jerry and the Boys,
“Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me, ‘What a long, strange trip it’s been.’
Truckin’, I’m a goin’ home. Whoa, whoa baby, back where I belong.       Back home, sit down and patch my bones, and get back truckin’ on.”
We can’t wait to bring our baby home and let her sit and patch her bones.  And we know it’s going to take a long time. But the love and support that you have all given has lifted us up and sustained us, and I know it will sustain Mia, too.
Before I finish, I wanted to remind everyone that we have another child, too! And that I haven’t forgotten it. Although Mr. Eli may have begun to wonder??  The S.F.E.!! (the Small Friendly Eli).  And that Mr. E is preparing to compete in the Regional Divisional Indoor Climbing Championships at Momentum Gym, in Sandy, UT, on June 11-12 (This weekend!!)  He is only 8 years old and is in the 10 and under class, and is very excited!  I plan to be there and everyone is welcome to come see these incredible kids rock the house!
Here’s a link:
We love you all! and again, we Thank You for being our friends. You are the reason we have been able to make it through this wild and crazy week.  Man! I wouldn’t wish this experience on ANYone!….. but we are grateful for opportunity to face it, embrace it, and learn from this incredible time.
I’ve been saying it for a while now, “I’m the Luckiest guy you know.” And one of the most Blessed.  When you stop and think about it, we all are.
T of THEMBricks
ps. seriously… have you neutralized today? two words… Baking-Soda.

 

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THANK YOU!!!! Love to you All!

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MONDAY, JUNE 6, 2011 1:48 PM, MDT
Heidi and I (and Eli and Mia, of course!) have been talking about what we experienced at Reservoir Park yesterday, and we wanted to try to tell you how it made us feel…….

Profoundly Grateful.
Honored.
Loved.
Supported. Lifted Up by all your Love, Concern, Compassion, and seemingly limitless willingness to be of Service to Mia and our family.
We both agreed…… We have the BEST FRIENDS in the WORLD!!! And it’s gone from the Wolf-Pack of 3 to the Largest Wolf-Pack of Hundreds or even thousands across this beautiful planet!!  Some people even think I’ve got friends in outer space……… ?
Anyway, Today has been a GREAT day! Yesterday was even Better!!!
Your loving embrace as Heidi and I walked into your circle of Love and Prayer, and getting to see our son, and each of you, was the most incredible experience (second to being told my Mia was going to get a new Heart!) I have ever received and been part of.  We only hope that the gathering was able to bring each of you some much needed Peace, and a feeling of Love, and to help support each of you who have been feeling the pain from an uncomfortable distance. I mean, I’m standing right there, Heidi and I, watching this happen; holding her hand; whispering intimate messages of never-ending love into her quiet ear; and as painful and as difficult as it has been, at least we get to be there.  So, I can only imagine how difficult it has been for each of you, and her beautiful dear friends.
I have been busy up here, trying to help support the other parents of other children who are also experiencing similar tragedies, and trying to make little hearts and Danger Cats, and pillows, etc, for the little babies and kids stuck up there with Mia……… But I wanted to make sure you knew how much Heidi and I were lifted up by your powerful energy and in seeing the degree of sacrifice you have all given to Mia and to us.
That is all, for now………..
Oh, except that tomorrow morning they are taking Mia back into surgery to ‘close’ her up, and to see if she can breath on her own.  Tomorrow is a HUGE day.  We need to get her closed up to try and prevent infection, as she is extremely immunosuppressed and at great risk of infection.
So!!….. Say a lovely prayer! Sing a Beautiful Song!!! CHANT it out to the Universe! of the Beauty of this planet! Of the Power of Love! and of the Uniqueness of Friendship!…… and the Gift of Life.  May MiaBella continue to be Blessed, and All of Us at the same time, so that she can one day give thanks to each and every one of you, and to continue to build those relationships that make this trip on Earth worth doing.
This entire experience, no matter how painful, no matter the outcome (albeit I have a hopeful ending), this has been an INCREDIBLE lesson and one heck of a Wild Ride!!
Life is for Living! and Mia-B and we All really have been blessed to have this experience and to share it as a community and a ‘Family’!
So Be it. Blessed Be. Amen.
T & H of THEMBricks
🙂
…..again, please keep that pH ‘up’ in that ‘pie-hole’ of yours. You know that bacteria causes heart disease, don’t you??  😉

 

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Living in the Moment

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SUNDAY, JUNE 5, 2011 2:01 PM, MDT
To all who will be at the park…

Tom and Heidi are overjoyed with the progress Mia B has been making! Please allow them to enjoy this beautiful day of celebration in bringing more healing to Mia by not overwhelming them with questions!  Hugs and loves are the support they need now!  They are celebrating every “baby step” and focusing on staying in the moment!
Thank you all for your energy and support!
xoxo  Amy Carpenter

 

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Home Run!!! …..But the Game continues!

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SUNDAY, JUNE 5, 2011 10:35 AM, MDT
HOORAY!!!! Mia has a New Heart!!!  Yippeeeeeeee!!! YES!!

“CLEAR!! COPY That!!!”
So, congratulations to everyone for this wonderful gift, this second chance, and for the opportunity to write the next chapter in her book!
The Game is not over, and she will remain upon ECMO for pulmonary support while her lungs continue to heal and so that she can begin to breath again.
The Surgeon told us, “She’s a tough kid. You can tell she’s very strong and determined.”  Mia is a Survivor.  If she ever get’s on the t.v. show, … Game Over. She’d win. 😉 Like our dear friend, Peter Muller (who is a Survivor himself and should know!) said about Mia when she was 3 years old, “She’s a Survivor!”
So, she is now a transplant patient. And with that comes some new parameters.  Due to the immunosuppression, she will not be able to have visitors until it is safe.  I will let everyone know when she can have friends visit…. because I know how badly you all want to share your excitement and your love!! We don’t blame you!
But we need our little Survivor to heal and have the time to get stronger.
Little Mia-B was put up to the plate last night, and she hit it over the wall.  Not sure what inning it is? ‘Cause I don’t play baseball. Perhaps it’s time for the 7th inning Stretch?? Time to SING!!!
Whatever inning it is, it’s ‘Game On!’ and Mia-B LOVES to play and WIN!!!  Yea, Baby!!!  Ha!!!
“Safety is NO Accident, People!”   😉  just kiddin. Go on! Get out there, Live Life to it’s FULLest! and take completely UNreasonable chances!!
Bless you all for your continued love and support. Mia’s going to need it for a while.  Me?…… I could die tomorrow and still be the luckiest and happiest man that ever lived.  ……. however, I wouldn’t mind having a bit more time with all of you and my little Angel.
T of THEMBricks

 

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