This is Her Story of Peace, Love, and Strength

Happy Birthday Mia from Jenn Gibbons and Jeff Griggs Sa Bom Nim and all of your Soo Bahk Do family.

One month after Mia was brought to the hospital, she surprised us all by indicating that she wanted to try and write something. This is incredible in itself, because only two days earlier I had placed a marker in her hand and asked her to write her name on a dry erase board, and she couldn’t do it.
Mia has developed her own simple gestures to convey her feelings. She moves her right hand, mostly, and rotates it, waves it, and points. She blows kisses, and says yes, no, and ‘Thank You’ in sign language style. But she has, until the 28th, been unable to make anything other than a circle and scribbly lines.
We had no way of knowing whether or not this was the result of an A.B.I. (Anoxic Brain Injury) sustained at some point over the past month, which was extremely likely. We had been warned that if a person goes through 48 minutes of c.p.r., a heart transplant, and with all the clot issues, the possibility of stroke or a.b.i. were very real. Now, MiaBella being the “Miracle Mia” that she is (and we’ve talked about the number of miracles that have occured throughout this whole experience), her blood gas’ or the amount of oxygen that was in her blood throughout the cpr was said to be ‘excellent’, thanks to the incredible staff in the C.I.C.U. and the fact that she was intubated and bagged throughout. Regardless, I have been extremely concerned, if not prepared for the idea that Mia would have some severe deficits (including the inability to write) once things calmed down.
Well, SURPRISE!!! I was at work when Heidi took a picture on her phone and sent it to me……..
Here is one of the first things she wrote:

"How many more days(s) here?"

It was one of the many Incredible moments in this journey and I will never forget it! Over the past two days, we can barely shut her up! ūüėČ
She’s asking all kinds of things!
She knows that she has had a heart transplant. She knows that her lungs are sick, and she remembers most everything we ask her. Her personality comes out. But she’s very tired a lot of the time. When she is ‘awake’ and alert, it lasts for about 15 minutes. She tires quickly.

Her days are full. They start at 4:30 a.m. with her morning chest x-ray. Throughout the day she is moved from side to side and takes turns on her back. This happens every 2 hours, or so? She needs frequent suction (from her lungs/endotracheal tube) as well as her mouth. She has over 8 tubes and/or lines going into her body….. down from over 12 last week! It looks like a freakin’ fisherman’s NIGHTmare in there! Especially when we move her to the P.T. chair!
We’re down to one chest tube, an endotracheal tube, a pic-line, and a couple of i.v.’s.

Now, with regard to this kid’s birthday tomorrow, I asked her what she wanted for a gift, and she wrote that we had been ‘discussing’ negotiating over a new laptop computer for school. Prior to this adventure, I had asked her to write an influential argument as to WHY she deserved a computer? Why she needed one? and what she would do to ‘earn’ and keep it? Rules of use, etc. I was just trying to be a good Dad. No a.b.i. here!! she totally remembered!
So,….. I told her I was going to get her a laptop for her birthday, and I needed to know what color she wanted. Light blue. ūüôā All I wanted was an Eskimo Kiss. Eskimo Kisses
Mia's words

ok..ok..ok.. I will admit that blogging and journaling are not my thing, but you have to start somewhere when you want to express your gratitude!
I know Tom has continued to acknowledge and thank all of you for your support, love and energy for our little Miss MiaBella this past month and I would like to do the same. The days are busy here in the CICU and with all of your support either Tom or I have been able to be here at all times (even the wee hours of the night, well Tom at least) at her bedside. That alone is so important for Mia. So thank you to all of our friends and family members that have helped take care of the little man Mister E.
I would really like to give a huge Thank You to Miss Heather at Eggs In the City for helping my sister Holly, my uncle Mitch and our friend Amy to host an incredible gathering on Saturday night for MiaBella. It was a great party and one that I know Mia would have loved to attend herself. The food was AMAZING, thank you Jim and Paula, just about the best pasta I have ever eaten …… Thanks to the other folks who brought a few yummy dishes to share as well. The drinks were served “fresh and cold” thanks to Erin and Ryan. The tables were evenly spaced and the snow cone trailor had many flavors to choose from, thank you Dirty! And…. it all ran super smoothly thanks to Heather and Patty. The poems that were written and read by all of those beautiful little voices brought a tear to many eyes, thank you to all of her friends and cousins for sharing your hearts.

Finally….. a big special THANK YOU with a kiss attached to all of you that gave to the “MiaBella Heart Fund”….. these words are not even enough to express my gratitude.

Peace and Love

H of THEM

PS…. Mia had a good day today. She spent close to 50 min in the PT chair catching and kicking a ball. Watch out Firebirds….. she’s back!!!

Just sitting here, holding Mia’s hand.
On my way to work very soon…… hard to leave.

Mia…… so very tired. But wants to watch “Glee”! After all, she’s still an 11 year old girl! So, with Mom squeezed up onto the side of the bed (don’t tell the nurses!), the drama begins!

Another day!…. one day closer to bustin’ outta here!! Love these nurses and docs, but sorry! This little Love Muffin/Spunky Monkey’s got some LIVIN’ to do!

tbrick of thembricks

Saturday July 2nd

8:30 PM – 11:30 PM

Marty and Nicki’s back yard villa
2529 South Park Street
Salt Lake City, Utah

 

Bad Westerns, cheap whiskey, and cigars.

 

You’ll be out drinking anyways, donate your dough to a good cause. All proceeds go to the MiaBella Heart foundation.

 

Bring positive thoughts, gratitude, love, and cash. Remember that cowboys don’t drive. Be responsible and bike, taxi, or ride a horse.

 

Have a heart! See you there!

It’s been a while since I posted about Mia, and that’s because…… well, …..I didn’t want to.

Mia had a really tough week or so. ¬†Last Friday, 7 days ago, she had the shampoo and P.T. Chair excursion, and she had a great time. ¬†And then Saturday the fun came to an end. To be honest, the last couple of weeks have been like a ‘black hole’ in my mind. ¬†I can’t really remember them without great effort. ¬†I remember the first week and a half…… that’s because so much happened and it was so sudden, so new. ¬†But now, it’s all beginning to run-together,……. so suffice it to say that last week/weekend was not good. It was, as they say, the bottom of the wave. Those steps backward that I hate. We tell our kids “Hate” is a strong word. And not to use it….. unless you really mean it. ¬†Well, I HATE those ‘baby steps’ backward because, frankly, they’re NOT baby steps! ¬†It seems I have such a hard time accepting that the positive/forward improvements have to be ‘Baby Steps’. But the Backward Steps are usually anything but ¬†baby steps. They’re more like backslides, or in Mia’s case, full-on complete slab to base, catastrophic Mt. Superior style avalanches.

Well, earlier in the week, and especially last week, I simply did not want to update anything.  There was very little to update that I wanted to spend any time retelling or even focusing on what Mia was going through.  It was, sincerely, a crucible of a week or more.  This whole experience has been, of course, life-changing, to say the least.  But last week was almost more difficult than the first week.  Which makes no sense, because how could it possibly be harder than that??  Well, for me, and I think for Mia, it felt like it.

I didn’t post, because………. I didn’t want to.

I won’t tell the whole story of the last week and a half, but I will try to summarize.

Saturday last, Mia began a fever. Along with the fever came other concerns. Her blood pressure kept dropping. Her lungs got worse. The pressures in her new heart began to rise. The fluids draining out of her chest tubes began to increase, and the Oxygen saturation of her blood kept decreasing. ¬†Last weekend it came to a head…… there was talk about possibly having to put a hole in Mia’s new heart in order to lower the pressures (the same procedure we did on Mia’s original heart, called an atrial septostomy), and then Mia’s Kidneys began to shut down. Without urine output, the potassium builds up, and this can jeopardize the heart, so they began talking about dialysis. ¬†Dialysis on an average patient is bad enough……. on a heart transplant patient, it is not something that is done casually or without incurring significant ‘downstream’ repercussions and added risk. ¬†So, when I could no longer keep my eyes open last Sunday night, Dr. Ngan convinced me to go to sleep. ¬†We agreed that they would wake me up if or when her K+ (potassium) reached 6.4, and that dialysis would be intitiated at 6.5.

Oh, but first, I must digress. ¬†Earlier in the week, as things had gotten worse, we were visited by some beautiful friends who offered to help us. ¬†As I have said, Mia has been visited by some amazing people. I can’t list them all. But suffice it to say that she’s been assisted by Angels and friends on many levels. ¬†Two such people, Anne and Cynthia, gave all three of us a gift last weekend, amid the chaos and turmoil of the C.I.C.U. and this incredible Rebirth. ¬†Sunday was about the third (?) time I’d left the hospital since this whole thing began, and I visited Anne and Cynthia, who helped me to work through some of the trauma I had endured in watching Mia ‘code’. ¬†I know I have mentioned to some of you what it was like, for me…… but I can’t really explain it. ¬†It is something no one should have to see, or experience. And, at the same time, I could not deny it. I know I had a choice to avoid witnessing or participating in this……. ‘thing’ that was happening to my daughter, but was impossible to turn away. ¬†I felt like, if this was truly going to be the last time I saw my daughter alive or in this life, then I wanted to take in every single aspect, every single moment, to remember every single thing I could, to bear witness to her life…….. and what I began to think was going to be her death. ¬†And, I can’t explain everything that went through my head, everything I saw or felt, (and some things I may never share with anyone but Mia?), because it seemed to be happening on separate planes, like there were multiple ‘realities’ going on at the same time? ¬†Time seemed to run slow…… and then it would speed up. ¬†I heard everything that was going on, and being said, and then there were periods of complete, profound silence. Later, I told Quinn I was embarrassed for fear that I had made such a commotion during the ‘code’, remembering and thinking that I had been wailing or screaming throughout the ordeal. But he tells me that I didn’t make a sound……. save once. And that I just kept moving. Interesting.

I had asked Quinn watch over Heidi, so that she wouldn’t have to see everything that was happening and since I knew I couldn’t be there for Mia AND for Heidi, too. (Thank you, Quinn.) ¬†And then I poured my soul and my spirit into my daughters. ¬†I spoke to her. I spoke to God. I refused to accept what I saw as inevitable. I thought, if I willed it enough, if Mia could hear me, she would fight. She would stay. For Eli. For Heidi. For me. And for her. ¬†I refused to accept this as the end of my only daughter. My precious MiaBella.

And then, as if by design (for surely, these people are true professionals) they began to move equipment into the room, and Eric Scaife, the father of Mia’s classmate Jack, came in and asked Heidi what she was doing there? And Heidi said two words, “It’s Mia.”

I watched as Dr. Eric Scaife made an incision in the side of my daughter’s neck, I knew it was an electrocautery knife because I saw the smoke curl up from her skin and the layers peal apart like magic. I was impressed with the intention and confidence in his movements and in the calm urgency as he worked to deftly place a tube down her vein and into her heart. I watched all of this as if I was doing the surgery myself, and wanted to refuse the truth of what was happening.

I saw the sweat on the foreheads of the beautiful men and women, (Drew, and Torrey, and others), as they continued to pump precious life into my daughters still and quiet body. ¬†I can see the color of the blood as it left my daughter and soaked into the sheets on the bed, and on the floor. ¬†It was so incredibly red. So RICH. So pure. It was the color of “Life”.¬†It was so profoundly sad and yet, so¬†beautiful at the same time. I wanted to collect every last drop of it….. and never let it go.

It was incredible. ¬†The air seemed to ripple…… to fade in and out. My body tingled. I prayed like I’ve never prayed before. ¬†I knelt upon the floor outside my daughters room and I called to everyone who had passed before. ¬†I asked them to give Mia courage. To be with her, to reassure her, to make sure she wasn’t scared. ¬†I asked God to keep her spirit safe…… for now. And I prayed that she not be asked to leave. I didn’t want her going too far away. Not yet. Not yet. ¬†We weren’t done. Mia wasn’t done. I kept telling her, “Don’t you DARE give up! Don’t you Go!! Brickey’s don’t give up!!”

Without Anne and Cynthia, I couldn’t have shared that today. ¬†Anne helped me to see this incredible and unimaginable moment in our shared life as just that. ¬†Instead of seeing it as the End of everything, it could also be seen as the beginning of something else. ¬†Indeed, it had to be. ¬†And I recommitted to the idea of being Mia’s father.

And she didn’t. ¬†But, I don’t think she decided what she wanted until Sunday night at about midnight. And thus, we find ourselves back to where this journal entry round-about sorta began. As Anne reminded me, I needed to be Mia’s father. To stop living in the moment when her heart stopped. Stop thinking about my daughter dying, and begin thinking of my daughter LIVING! So, I went to her bedside and I whispered into her ear. And I told her she was wanted. She was needed. And I refused to believe she would not survive. I called her to her Courage, the way Cynthia & Steve Wand taught me. And I told her I BELIEVED she would live. I told her I wouldn’t leave her. And I asked her to stay. Despite the pain. Despite the trouble it was going to be to live. And, I think she heard me. Because fifteen minutes after I went to bed, at Dr. Ngan’s behest, and while I slept, MiaBella began to pee. ¬†I went to bed and her K+ peaked at 6.3 sometime between 12:00 and 2:00am. And by 6 am it was down to 4.8!! It would continue to lower over the next several days until it was within normal range.

Skip ahead…… after another successful (negative on the Rejection) Cath Lab biopsy on last Tuesday, Mia has done nothing but improve. She had a tough day after the biopsy, and we were afraid we were headed backwards again when she didn’t pee until late Tues. night, but in the end, she did. ¬†She is improving as I write this now. ¬†I am sitting at her bedside, and this journal update thing has taken ALL day to write. ¬†But I wanted to get it done. ¬†I wanted everyone to be able to also feel the joy I have right now, in knowing that MiaBella is still here. ¬†It doesn’t do me any good to talk too much about the fact that Mia’s life has changed. And that of the rest of our family. If we don’t know that by now, we will. And just like the rest of this past month, it seems to me that whatever will be, will be. ¬†That doesn’t mean we won’t continue trying or fighting! But, it also means that everything is exactly as it should be, and is as good as it is. And I can look over and I see my daughter’s beautiful face, with pink color in her cheeks, and I can see the rise and fall of her chest as she breathes, and I can even see the impossible beating of her Beautiful Heart within her perfect breast. ¬†MiaBella Heart. “My Beautiful Heart”. ¬†Yes, it is.

There are so many people all over this world, so many beautiful, caring, lovely people, putting your shoulders behind Mia, lending your energy, your love, your Faith and prayers, and your Love…….. You all will NEVER know how much I appreciate it. ¬†Thinking about you all brings tears to my eyes. Tears of gratitude, joy, hope, and awe. ¬†I also wish I could see each of you….. to give you a hug. To look into your eyes and tell you how much I appreciate you. ¬†I pray that something like this never touches any of you, or your children, but I know that it could. ¬†And I want each of you to know that I will be of service to anyone of you, or another, who should ever find themselves in our shoes. ¬†A dear friend, Andrea, sent me a beautiful note that described it perfectly. ¬†I will not be able to make things better. I may not even really be able to ‘help’ in any tangible way. Because when this kind of thing happens to a person or a family, there is nothing anyone can “do” to make it better. ¬†Give me back my child. Make it go ‘away’. Take me back to my ‘old life’. ¬†These are the things the parents want. And will never have.

Having said all that, I WILL want to help……. just like all of you. ¬†And, I want to thank so many of you. ¬†I keep coming back to that! Because you have all been so amazing. ¬† I never found out who the “lady with brown hair” was that came and weeded our garden last week? ūüėČ Thank you. ¬†I just found out who kept dropping off Great Harvest loaves of bread and super yummy cookies every day at the house. ¬†I ate my share, and kept the nurses and docs in the I.C.U. content with the rest. Thanks Brad and Tracy. ¬†I found out Heidi’s cousin’s held a fund-raising House Party last night in Ogden…… I think the O-Town Police were sampling carrot sticks and chicken wings, while the kids jammed to the numerous rock bands that played for free?! (only one person ended up going to the hospital. We hope she’s ok? Do we need another benefit concert??)

To Holly, my cousin Matt and Nan, Amy, our Folks, Missy, Camilla, Lori, Stacie, for taking care of Mr. Eli; to the kids who have served us lunches, dinners, and snacks….. Uncle Scott for morning coffee and cookies throughout the day, Tiffany for morning coffee and words of support and a solid shoulder, to Ellie Bellie Full of Jelly- for your incredible skill and love of both your art and my daughter, to Brian….. for this website, the support, the words, the prayers, the love. And his incredible wife! Helena. ¬†Behind EVERY great man is an even better woman! (I didn’t just say that…. it’s a fact.) I will never eat better biscotti! or banana bread. To Laurie, and her son Jordan, and his Platoon, who sit in harms way, and take the time to care for my daughter and to honor her in the most meaningful way they could. To Laurie again, for introducing Mia to Paul Cardall, and to him for his gift and willingness to help. Whether you know it or not, Mia will be joining you on another hike up Mt. Olympus one day! And I’m already working on a trombone and piano duet! ūüėČ ¬†To Allyson, for being the future accidental heart transplant mentor; and all the people on the transplant team.

To Dr. Eric Scaife and the rest of the Liverators and Team Donate Life!! Who just finished racing bicycles across the entire United States in a week!!!! to raise money for transplants like the one my daughter just got. And to ride with “MiaBella- Peace, Love, Strength” bracelets, and in her honor. WE are honored by your show of support and dedication. I only rode a bike across France, and that was when I was young and strong, and in the company of a dear friend to this day. ūüėČ And I thought that was ‘hard’?! Your achievement is impressive and worthy of great praise……. if not a complimentary beer or two when you get back home!!

To our friends and family in Germany, JaKaReKa; to Heidi’s family in Italy & Switzerland (Flora, et al); to my old Monson Road buds in Canada and N.Z., and wherever else you are? To friends and classmates in Oregon; fellow Yellow Twinkie ‘Taku Stowaway’ VW bus mates in Minnesota, and all our friends/family all over the United States. To the numerous other medical friends/docs/nurses/etc, who may not have been directly involved in Mia’s care, but still came by to check and give a hug! To our latest Fashion Consultant, ‘Mean Jean Hindley’ and her new line of I.C.U. Bed-Friendly Tops! To Marty and Nickie, for sharing my love of mashed potatoes and gravy. To Amy, for loving and supporting Heidi so well.

I’ll need an entire entry to thank the people like “Ellie Belly Full of Jelly”, aka Dr. Hirshberg, for her excellent clinical skills and equally wonderful interpersonal virtues; and the C.I.C.U. Attendings, Fellows, Residents, Nurses, Techs, R.T’s, P.T.’s (I think we’ve got something going with the narcotic “Junkie Aerobics” exercise routine! I smell syndication and a possible video series?!), and more….. whose permission to include their many names here I did not (yet) get. ¬†This has truly been one incredibly fantastic ride.

Before I close,…. and if you are still reading?!….. I want to acknowledge two groups of people the most. Because, when the going gets tough, and when I’ve been down, or when our spirits have been the lowest, and I haven’t used my best virtues, they are still always there. And that is our family: our parents- Bob and Jan, Pete and Sue, and Joe in Arizona; our sisters- Andrea “A.B.”, and Holly, and their kids; my brother-David and his family; Heidi’s Uncles and Aunts, and their families (Mia’s so excited to see “the Girls” from N.Y. she can’t stand it!); my own cousins and lovely family of Uncles and Aunts; and last, but not least, my incredible staff.

The ladies at our dental office are the most amazing people. Period. But, most of you already know that. Well, when this happened to Mia almost a month ago, I didn’t even have to call Krista, or anyone else. Lori, Krista, Amy, Danielle, Britney, Lu, Cheryl, Erica, and Miss Jenny took care of everything. They, along with Dr.’s Adam and Michael Van Leeuwen; and the one and only Dr. Kelly Carroll, all helped to take care of our patients while I stayed by my daughter’s side. I couldn’t be blessed by better coworkers and friends. They really are wonderful people, hard workers, and like Elf kept saying on KCPW, they ARE pretty good looking, too! ūüėČ (sorry, had to say it.) We love you. (ps. you can all forget about those raises this year! sorry!) jk ūüėČ

sunset at pcmc

End of the day. Tomorrow brings a New Day!

So……… it’s 4:00 in the morning, and time to think about some sleep. I began this update this morning at 7 am…….. thus, the lengthiness and rambling nature of my pondering. Not being one prone to exaggeration, of course, I can always be trusted to describe the situation on the ground like an investigative reporter.

In the end, It’s All about the Love! ….. that, and clean floss. And bracelets.
Peace, Love, Strength!!

Thank you to the Family who donated MiaBella’s new heart, and provided an avenue for all the Love we see circling around this family and this community. We are eternally grateful.

tbrick and themBricks

LAST MINUTE BUSINESS HOUSE CLEANING:
TODAY!!! Saturday, June 25th
Dinner Fund Raiser at Egg’s in the City, on 17th E. 1300 South!
See you there!!! Drop by to Celebrate Life!!! and Help us raise money for our New Charities: Myocarditis Foundation, and our personal Goal of supporting the Ecmo efforts at Primary Children’s Medical Center. (I want to buy them another Ecmo machine…… like the one that helped save Mia’s life and give her a second chance. It’s only a cool $50K or so.) We Thank You in advance. (I also Thank Mitch, Amy, Holly, and Heather at E.I.T.City, and everyone else who’s donating and supporting. We Love you!)

And! I just received a text from Eric Scaife! I knew if I took long enough he’d finish! Across the country in 7 days.??? Seriously?? Impressive.

Hello everyone,

The Brickeys would like to thank everyone for your love and support and are really appreciative of your kind donations. ¬†There have been a few calls regarding making a donation and then not having the payment show on the site like it should. ¬†The plugin that was being used wasn’t as reliable as we would have liked and there were some configurations that got set wrong. ¬†If you donated prior to June 25, please log into your PayPal Account and CANCEL your donation.

You will notice the transaction above is marked “Unclaimed” and assigned to thembricks@gmail.com. ¬†This is what you will also see on your PayPal Account. ¬†That is the incorrect email address. ¬†Unclaimed means that there is no PayPal account related to that email address. ¬†No harm done. ¬†The correction has been made and all donations made to the site will go to the Brickeys. ¬†So after you cancel your donation, we encourage you to return to the donation page and make your donation. ¬†To simplify things and ensure there aren’t anymore hiccups, there is now just a simple donate button without all the fancy name posting and running total. ¬†If you have any questions, please place a comment on this post and we’ll respond quickly.

 

Thank you for your patience and we get things set up.

 [paypal_button hosted_button_id=”EA69QAL2T2QUU” img_src=”https://www.paypalobjects.com/en_US/i/btn/btn_donateCC_LG.gif” img_alt=”PayPal – The safer, easier way to pay online!”]

Blood Drive

in honor of MiaBella on her birthday!


Friday July 1st   9:00 AM Р2:00 PM

The building where Dr. Brickey’s office is located!

3191 S. 3300 E.  Suite #154   SLC, UT

 

 

Please join us and the American Red Cross on Friday July 1st for a blood drive in honor of Miss MiaBella! We would love to see you on this special day (it’s her birthday) and it’s for a great cause! There will be juice and water provided and in addition, there will be a bake sale/fundraiser, so bring your sweet tooth!

Make sure to pass this event information on to any of your friends that may be interested, we’d “love” to have them (because as you know…it’s all about the love!)

If you are unable to attend, donations are also being accepted through PayPal at: https://miabellabrickey.com/donate or at any branch of Zions Bank under the name MiaBella Brickey Donation.

Individuals who are 17 years of age or older, meet weight and height requirements (110 pounds or more, depending on their height) and are in generally good health may be eligible to donate blood. Please bring your Red Cross blood donor card (if you have one) or another form of positive ID when you come to donate. If you have been told previously by the American Red Cross or another blood center that you should never donate blood, you may not give blood.

Alla Vita!

ALLA VITA

TO THE LIFE OF MiaBella!


 

Please join us for a benefit dinner honoring MiaBella‚Ķ.. An evening of ‚ÄúPoetry from the Heart,‚ÄĚ and contribution to her new start on life ……..


*All the children will write a peice of poetry for MiaBella to go in her ‚Äúpoetry from the Heart‚Ä̬† book.


MENU: Homemade Italian pasta, Polenta, Green salad, Roasted vegetables, Italian meats and Cheeses.


WHERE: Eggs in the City     1675 E.  1300 S.

WHEN: Saturday June 25th    6:00 PM Р9:00 PM  OPEN HOUSE


***We are graciously asking for a donation to be made to the MiaBella Brickey heart fund. Donation amount will be at your generous discretion.  XOXO

FRIDAY, JUNE 17, 2011 9:11 AM, MDT

Our MiaBella has Giant Cell Myocarditis.

It is a very rare form of myocarditis and from the statistics available, Mia is so far a very fortunate young lady.
To give you an idea of how fast things move around here, we received a diagnosis from the pathology deptartment last night. ¬†As they were telling me the news, I remembered a post from a father of a fellow Rowland Hall student and fellow Jazz Band member of Mia’s….. a Dr. James Milovetz.
I immediately pulled out the computer and scoured the guestbook entries until I found his post. ¬†Thank you James. ¬†I remember telling Heidi that I was going to call him the next day….. but that was June 3rd, and we had just been told that Mia needed a transplant if she was going to survive, and I just……. forgot. There was too much going on, I guess.
So, an hour later while at dinner I texted Dr. James Milovetz, and before I could put a bite of food in my mouth, he was calling me. ¬†He mentioned that he knew a Dr. Les Cooper, from the Mayo Clinic, who just happens to be the best authority or cardiologist on Giant Cell Myocarditis in the Country, if not the world. ¬†Dr. Milovetz was so kind and willing to help in any way he could. ¬†He called Dr. Cooper at his home (I think in Minnesota?) and connected Dr. Cooper with Mia’s doctors up at P.C.M.C. here in S.L.C.
I have since tried to contact Dr. Cooper myself, and am awaiting a call back, at his convenience.  I do know that before 10:00 last night the doctors helping us with Mia had already spoken with Dr. Cooper and they are doing everything they can to design a plan to help treat Mia.
So, Thank You, Dr. James Milovetz, for taking the initiative to contact me/us, and for whatever reason you had for doing so, for unknowingly facilitating contact with the world’s foremost authority on the rare this rare form of myocarditis. ¬†It should be pointed out that when the diagnosis was made, the doctors up at P.C.M.C. already knew who Dr. Les Cooper was, and were in the process of contacting him as well. ¬†But without Dr. Milovetz, I doubt they would have spoken last night! Dr. Cooper was heading out of town TODAY….. and probably would not have been available until next week? Who knows? ….. that’s fiction. But the point is, once again, the power of Love and Caring, and the far reaching fingers of Mia’s community, the Rowland Hall Network, and the beauty of people who care for each other.
So…… we know what happened to our Mia. ¬†We just don’t know why? ¬†As the cause of Giant Cell Myocarditis is unknown? Just theories. But they are working with some ideas on how to best treat it, and I am going to choose to do my best to trust the doctors to do the best for Mia……. and me and my eyes and ears are not far away. ¬†They may be growing sick of me up there…… but she is my daughter. She means the world to me. I can’t explain. So, Heidi and I are her advocates. Alongside some of the most amazing nurses in the whole freaking world!
Last night, a nurse….. let’s call her “Mindy” for fun, solicited help from some of her fellow friends/nurses/techs, etc, and they did for my daughter something she hasn’t had done in over 20 days. ¬†They carefully! moved her into the p.t. chair we mentioned a few days ago….. and washed her hair! gave her a bath!! soaked her feet in warm soapy water!!! Did her hair!!!!….oh!! you should have seen Mia! She was SOO happy! She did the best she could to smile! The ladies in there had a Grand old time! ¬†THey sang, chatted, told stories…… they made Mia feel like a little girl again. Or, a young lady, I should say. ¬†But a ‘person’, not just a ‘patient’ or a number, or a statistic, or a problem.
It was so sweet. And we rushed back from dinner just in time to see her and revel in the moment. ¬†We carefully! moved her back into bed and while Heidi cuddled with her, I read her current favorite book to her until it was time to sleep. She had so much fun, after a really horrible day, that she didn’t want to sleep. But with listening to Paul Cardall’s latest music (http://www.paulcardall.com/ which¬†he dropped by personally!! Thank you Paul! I hope Mia and I can meet you and maybe she can even play a tune with you on her trombone! or maybe take a hike up Mt. Olympus?!! I’d love that!) we were able to get her to sleep.
It turns out the night was a rough one. ¬†She didn’t sleep long, or much. And She’s sleeping right now. ¬†Her lungs are fighting. SHe is fighting! and everyone is doing everything they can for her. ¬†I just never knew that we’d have to battle so hard AFTER the transplant. ¬†I thought that was the toughest week ever! and that she’d be on the downhill side of the mountain. ¬†Man…… this is hard. SHe’s so sweet. She tries so hard. She listens to the nurses, to the respiratory therapists…… she never complains. She never even cries. ¬† But I do.
Heidi and I are home…… taking showers and heading back up. ¬†ELi is with his cousins. Friends and family continue to support us, and Mia. We thank you, again.
One person kindly said, “Tom, you need to be ‘O.K.’ What can I do?” ¬†I told her, “I’m not upset (with you), but I’m NOT ‘O.K.’. This is NOT ‘O.K.’ And nobody can make it, or me ‘O.K.’ “.
So, no offense to anyone. I’m not mad at anyone. And I am not unappreciative of your love and support. ¬†……. I can’t explain it, but there’s nothing anyone can do to make this ‘ok’ for me. ¬†I have to find that place myself. And it’s a difficult road for me right now.
I just need to find that place……. where I somehow found courage and faith, to do the things that other people said I couldn’t.
Thank God no one has told these things to Mia. You can see it in her eyes…… she even tried to do a little dance last night amid the fun when I started singing Beyonce’s “All the Single Ladies” song…… it was so cute! Her shoulder shimmy and shake!…. it brought smiles, laughs, and tears to everyone’s eyes in the room.
You guys……. she’s so beautiful. She’s my baby.
I love her so much.  It kills me.
Mia, please come home with me. Please.
Daddy.

Tag Cloud