7th Grade Ends, New Adventures Begin

As the school year winds down with one bang, Max will be starting off his summer vacation with another BIGGER bang! As of tomorrow morning Max & Co. will be off on Max’s Make-a-Wish trip…. a Mediterranean Cruise! There is absolutely no way we will ever be able to thank Make-a-Wish and all the generous donors who make wishes come true for such deserving children. This entire process has been so truly wonderful, we’ve met so many great people and had so many incredible experiences.

There are so many people to thank for the memories that are being created that I don’t even know where to begin. First and foremost there are our Make-a-Wish friends: Max’s Wish Granters, Robert and Sheri and his Wish Manager, Carlos. Also a HUGE and special thank you to Maggiano's - Little Italy Restaurant in Scottsdale for giving Max such an amazing send-off party and Brooks Brothers at the Biltmore Fashion Park for so elegantly outfitting us for “Formal Night” on the cruise.

Stay tuned, we will be updating here with the latest news and pictures of “Max’s Mediterranean Adventure”. Arrivederci tutti!

7^th Grade Outstanding Science Student of the Year

School's Over, Let’s Go Home

Max and His Wish Manager Extraordinaire Carlos

Captain Max Prepares to Set Sail

The Golden Rule

A few months ago we were approached by a lovely young woman who is a journalism student at Arizona State University. She was working on a project about “The Golden Rule” and wanted our permission to spotlight Max and his involvement with Kids Playing for Kids. She came out and interviewed all of us including Max’s superhero “Coach Tav” but we never heard anything else….that is until last week when I was researching something else for Max and I came across this video. All I can say is that I wished I had been smart enough to realize she might have been using the video for something that was going to be placed on the world-wide web.…I might actually have combed my hair!

A Lot of Days in the Life of Max &Co.

It was brought to my attention recently (OK more than once by both Michele and Max) that I have really sucked at keeping the blog updated. I really don’t know why I haven’t updated these last few (OK, many) months, perhaps we’ve become boring (hardly!) or perhaps I’m just lazy (this option gets my vote). Either way I’ll do my best to bring everyone up to speed.


On the medical front, we have been our version of relatively calm. This means that we have only had a few new diagnoses pop up. The most notable at the moment is the possibility of rheumatoid arthritis in Max’s hands. The jury is still out on this as we are awaiting several test results to come back. In the meantime we have added twice weekly sessions of intensive occupational therapy for his hands as well as added a new specialist to our “dance card” at Hopkins. That’s right folks we are already set for our yearly pilgrimage to our Mecca known as “Johns Hopkins Children’s Center”. Most people are attempting to exit the frigid northeast while we desert rats are actually charging ahead praying for double digit temps and less than a foot of snow.

Max has also been “rocking it” on all academic levels. He has made the honor roll each quarter and continues to excel and grow in all areas. Once again he has some great teachers that have been putting up with me, no small task and really helping Max succeed. On the extra-curricular front Max was just named student coach/manager of the school’s baseball team. For those of you who know Max this is a perfect fit for him, he’s in seventh heaven!

So there you have it, a very quick update on “A lot of days in the life of Max & Co.”

The Week's Wrap-Up

So first things first....I know I owe a lot of you an explanation of last week's "fire drill" but I have been so burned out and running on empty I just never got it together long enough to sit down and blog. 

Very, very long story short after seeing our cardiologist last week it was decided that we needed to do some further testing to get  a better view of Max's entire aorta, not just the small piece that an echo cardiogram reveals. The most desirable test would be to do a cardiac MRA/MRI but those take months to schedule and there was no place to "shoe-horn" Max into the schedule so it was decided that we would do a CAT scan with contrast. That's where the real fun started. We went to Radiology on our way to another doctor's appointment where they were kind enough to fit Max in immediately. Once done we were on our way to Hematology which was meant to be our last appointment of the day. I was no sooner in the exam room with Max and Michele when my phone (actually both of them) started ringing and beeping as if it were the end of the world. The first message I received was from Libby, Cardiac Nurse Practitioner Extraordinaire, it went something like this...."don't worry but call me right away". These two phrases just don't go together, even on a good day. When I called Libby back it seemed the scan showed multiple blood clots on Max's portal vein or the vein that feeds the liver with it's blood supply. This was a two fold disaster in that it meant we could be incurring liver damage as well as the possibility of throwing a clot to his heart. Never a good thing but especially bad for a kiddo with an artificial heart valve. We were told to hightail it back to Radiology ASAP. I spoke to the Hematologist after sending Max out of the room so as not to scare him too badly. At this point I was violently shaking because I knew this was a new and very serious issue. Dr. Keefer, sent us straight over to the Hospital, calling over to let them know we were on our way all the while reading the scan himself. He looked pretty sober as he read the images on the computer screen. Now I was beside myself. When we got back to Radiology there were three high level techs and two or three doctors waiting for Max. It was surreal to see their attention and speed. I sent Max into the room with Michele because there was no way for me to hold it together and not scare Max. I sat in the waiting room with Libby and sobbed. I was given consent papers to admit Max to the Cardiac ICU for immanent procedures to rectify the blood clots. After what seemed an eternity one of doctor's emerged, his first phrase was, "It's good news". Libby and I screamed and hugged and were barely listening to the poor man by this point. So here's the short part of this long story. It seems that after multiple heart and abdomen surgeries Max's anatomy sucks (surprise!) and the contrast given during the scan never made itself all the way through his veins to illuminate the area around the liver. Evidently "black" on a scan means no blood flow which means clots. So strange anatomy coupled with a vein system that has created what they call "collateral veins" made by the body to compensate bad blood flow gave the impression of blood clots on the CAT scan. Via the ultrasound they performed with Doppler they could see that the flow was fine, "special" but fine. Thank God! 

As you can imagine after all this excitment things got pretty boring, boring as in routine check ups! In the end, everyone was happy with Max's health status terming him stable (at least for now) and we can wait a year before we need to return. Obviously this could change on a dime but we'll take it and run! On our way out the door to the airport and on our way home. Hallelujah!!

Where in the world is Max and Co.?

If it's June it must be Baltimore! This is our annual fun-filled, all inclusive stay at the world renowned resort known as Johns Hopkins Children's Center. Although we are in the midst of our dawn to dusk ritual of doctors' visits, blood work, x-rays, ultrasounds, and Max's personal favorite CT scans (yes, I'm making that part up) we did find a few hours to visit Washington, D.C. last night. In the last few years we have tried, as much as possible, to throw in a few fun moments into these trips so that the kids won't be completely miserable.

I'm glad we did this yesterday because today ended up being quite scary and emotional, so much so that I am too drained to even write about it tonight. Suffice it to say it was another one of our famous "fire drills" and we thank God it all ended well. More info tomorrow.....

First Stop - The Vietnam Memorial

Second Stop - The Lincoln Memorial

The boys taking a break 

A family with a view 

Mom and Max

I love this city!

Max at the Martin Luther King Memorial Under a Favorite Quote

"Trailblazer of the Week"

Today has been just another day in Max's "big week". Beyond yesterday’s award ceremony this was also Max’s week as “Trailblazer of the Week” for his classroom. What this equates to is a Popsicle and certificate from the school and snacks and a “show” provided by Mom and Dad.

By the way, I should mention that next week will be just as “big” as this last one has been. Next Thursday is Max’s 12th birthday and all I can say is, “where the heck did the last dozen years go?” I guess Max is right it really is all about him! This is his “Birth Month”, you see Max has never celebrated just one day, he believes it should be a month long activity-fest!

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He Did It! He Won!

Today 126 of Gilbert, Arizona's best and brightest were honored during a "Character Counts" award ceremony for the District's elementary school students. As some of you might remember from an earlier post Max's wonderful teacher, Mrs. Funkhouser, nominated him for this award and this morning Max was honored as an "Outstanding Nominee"!

To say tears were flowing would be an understatement. This morning I realized just how many people love and respect Max for who and what he is. They don't see him solely for the challenges he faces medically or the courage he shows as he does so, instead they see him as the kind, loving, gentle soul he is.

 

Max is so proud of his metal, especially because they spelled his name correctly!

Max accepting his award from the Mayor and City Councilwoman.

That trademark smile we love so much

Max, Mrs. Knoph, and Mrs. Funkhouser

These two ladies will never know what their love for Max means to us. Because of them we can send Max to school each and every day and know that he is loved, respected, and extremely well taken care of. Mrs. Funkhouser and Mrs. Knoph we love you both to bits!

Max's Weekend in Pictures

We all know Max and we all know how much he LOVES sports so this season has been particularly exciting for him as he got to try his hand at a new sport, lacrosse! As always we need to thank Coach Tav and his organization Kids Playing for Kids as well as all the wonderful kids playing for the Arrowhead Warriors for everything they do for Max. The kindness shown Max (and by default us) continues to be overwhelming from this incredible group of folks! 

Again, knowing Max it's all about dressing the part so he was thrilled to be outfitted with gear from some very generous folks at Elite Lacrosse in Scottsdale. However, some very cool kids and their coaches from Scottsdale Lacrosse Club's Mustangs team took it one step further after Saturday's game when they presented Max with his very own Mustang's jersey. Max was thrilled to add to his sports' jersey collection! Perhaps one of the highlights in all of this is reflected in what I like to refer to as a "Maxism", i.e. some pearl of wisdom that makes sense only in Max's world. It seems that after the kids presented Max with his new jersey he went up to the coach's son and said, "thank you so much for the new jersey but you know I can't change teams". So there you have it...my son is nothing if not polite, egotistical but polite!

A very BIG thank you to everyone who has gone above and beyond in honoring Max and his desire to be part of a team. I can only hope that the shear joy on his face and the tears in my eyes has clearly demonstrated to them the power of kindness.

 Max with his team the "Warriors" and his new friends the "Mustangs"

 Max being presented with his very own "Mustangs" jersey

Monday Morning, off to school in his lacrosse "finest"

Max's World

As much as we hate to admit it, as much as it makes us super emotional to watch this video we know just how blessed we are to have the ability to bring Max to Johns Hopkins to receive the type of care this video talks about. We love you Dr. Vricella and Max's whole "gang" at Hopkins!

Empathy: The Human Connection to Patient Care

A good friend that we have known since Max's birth sent this video to me this morning. Chris is one of those extraordinary people that come into our lives for a reason. God gave us this special life with Max, I doubt I would have ever chosen this road. Chris is different, she has chosen this road by adopting several children with health issues, a few of which are cardiac. She has shared a lot of her wisdom with me over the years and I have more respect for her than I've probably ever told her. Chris, thanks for this very emotional video and an even bigger thanks for all you do for cardiac kids and their families!

Get the Kleenex! 



Wow!

Most of you who know me know that I am rarely if ever speechless, today is an exception. And a HUGE one at that!

Earlier this afternoon I received an e-mail from Max's teacher, when I opened it I was expecting an update on the weekend's homework assignments but instead I found the following essay. It seems Mrs. Funkhouser has nominated Max for a "Character Counts" award. At the end of the day I have to say I really think Max has already received his award -- he has the best teacher ever! This teacher will never fully know how much she and her love for Max has touched my heart. Not every "special" kid is blessed enough to have such incredible love and support from his whole community.

On a lighter note Mrs. Funkhouser will be following Max to Junior High next year......that is if I have anything to do with it :)! A big thank you to this wonderful lady!


Massimilliano Marangella


Upon entering my classroom, every person who joins us is greeted enthusiastically by my student Max. He brings so much positive energy to our classroom each and every day and is a beloved member of the student body here at our school. Max is a student whose peers respect and admire him and he holds a special place in our staff’s heart. He is a person who simply encourages you to smile and see the beauty of the world as he does. He absolutely deserves the Character Counts Award because he resonates all the traits that the character counts program stands for.

To understand Max a little better you must first understand that Max is a medical miracle. His “second home” is John Hopkins in Baltimore, MD where he receives treatment for a rare tissue disorder. He has had over 40 surgeries and procedures in his 11 years of life. He understands challenges and hurdles better than any 11 year old should and continues to prove his strength and determination not to have to miss out on anything in life. For example, just before Christmas, Max underwent his 41st procedure and while still coming out of sedation confirmed with his doctor that he would be able to be back to school before break so he wouldn’t miss out on our class’s holiday party. He simply loves life and tackles each and every day with extreme gusto and drive. He hates the moments he has had to sit on the sidelines, and every opportunity he has to participate he does so without restraints.

Having been a patient so many times in his life, he understands the challenges of being a patient in the cardiac ward, and gives back selflessly with his family alongside him at Phoenix Children’s Hospital. He delivers presents to the children, and goes in to volunteer to keep company with them and do his part to cheer them up. He has the most positive energy, and the greatest sense of humor of any child I have ever met. You simply cannot help but smile when you are around Max because he brings it out of you. He does his part to help others around him and inspire others by openly sharing his energy with them.

He is respectful to others in class as well as in his sports teams he plays on. He is the biggest cheerleader of others successes and relishes in recognizing greatness in those he is around. He celebrates accomplishments with sincere joy and enthusiasm and builds others up with recognizing their good qualities.

Max’s days are packed from school, to sports, to therapies and doctors appointments and never does he ever let that negatively effect him in school. He is always responsible for the material he is assigned and will do his best on every project and activity before him. He works tremendously diligently and is successful because of his hard work and determination. Due to his physical limitations, homework often takes him significantly longer than for his peers, however he never complains and always shares the highlights of what he has learned in completing the activity. He is trustworthy too, for instance, when he needs a weekend to complete an assignment, you can be certain that come Monday, it will be turned in promptly without even having to ask.

Max exemplifies this award in every way possible and is truly a Character Counts kid. His heart according to medical doctors might be in need of repair, but his heart that reflects his soul is more complete and complex than any child you would ever meet. He is admired for who he is, what he has overcome and powered through and the way he treats and interacts with those who are lucky enough to know him. One can only hope to be lucky enough to know a kid like Max in their lifetime!

Shoes.....

There are many difficult days in the life of a "Special Mom". Some are hard due to medical issues, some due to the roller coaster ride of emotions we endure, and still others are due to the sheer bureaucracy of it all. Yes, this "job" often stinks for a myriad of reasons but today is one of the days I find the hardest. Today was what the State of Arizona refers to as Max's "Yearly", i.e. the assessment they do to be sure that Max is receiving all the services he may need or be entitled to. Now I want to make it perfectly clear that what I hate most about this process has nothing to do with what services he receives as a result of the meeting. I’ve come to expect that each year we will likely receive less support due to the State’s budgetary restrictions. It also has nothing to do with my relationship with Max's state caseworker because God knows I wouldn't have made it this far without her in my corner. My hatred for this process is more emotional than anything else.

How can I answer the pages and pages of questions during the two hour long interview without being hit square in the face with the reality of what my “job” involves? When faced with questions like: where would you like to see your child in five years? In 10 years? How can I answer these questions when I often don’t know where we’ll be in five minutes? How can I think that far into my son’s future without becoming emotional? How independent can he be? Will he be? What will happen when Michele and I aren’t here to care for him……oh lord, I really don’t need to think about all of this! Every year there’s one certain outcome from this meeting, tears! In 11 years I have never made it all the way through without being passed the Kleenex box!

So tonight when I opened my Facebook page I was quickly reminded that every once in a while I come across something that speaks to where I am at the moment. The following was posted by a childhood friend of mine who also “walks the walk” with her son. She too “borrowed” it from someone else and I immediately fell in love with it. Thanks Angela!
 

I am wearing a pair of shoes. They aren't pretty shoes… uncomfortable shoes. Each day I wear them. Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yet, I continue to wear them and continue my journey....I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.... To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them. But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No Mom deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a Mom who has a child(ren) with special needs. I will forever walk in these shoes.

 ~ Unknown

 

Maybe, Just Maybe Third Time Will be a Charm?

This might just be it folks, they brought Max back to the OR about 45 minutes ago and so far no one has come out to say we can't go ahead and finally get this done. I can only hope I didn't just jinx us....

Please pray and stay tuned.....

Third Time's a Charm

Or at least we're praying it will be! The cardiac surgical scheduler called yesterday to let us know that Max was scheduled for his procedure on Friday the 21st, the Monday before Christmas! Are they kidding me? First they wanted to do it the day before Thanksgiving and now just a few days before Christmas. Evidently no one realizes that we too like to celebrate holidays. 

Long story short, because Max is a "rock star" (the scheduler's description not mine...although I tend to agree) at Phoenix Children's they moved the kid that was scheduled for Monday the 17th so that Max can be first case that day. If all goes well, or at least better than the first two attempts at this, Max could/should be as good as new in time for Christmas. Again, that's what we're praying for!

Stay tuned and pray like mad for "good" blood levels!

Too Little, Too Much, Too Late

Where to start? The first thing I should do is apologize for the late update but there are two very good reasons for the lag time: one, we were all mentally and physically exhausted last night and two, I was really too frustrated and angry to write anything that would be less than venomous!

The long and short of it is we did absolutely NOTHING yesterday! For those of you who don't know us or Max well you will probably think I'm making this whole thing up, for those of you who do know us you'll know this is par for our course. After spending the entire day in pre-op, where not a single medical professional soul darkened our doorway, we finally had Max's blood draw done around 3 o'clock. Why so late in the day? It's simple really, nurses don't always listen to moms so although I continually asked our nurse, who was quite busy sitting on his posterior, to draw Max's blood levels it took the surgeon coming out and yelling at everyone involved because the results weren't available thus delaying Max's procedure even more. When the nurse finally came in the room, quite angry about the whole thing, he quickly began manhandling Max and treating him as though he had no right to be upset with this treatment. He was in a rush and Max was holding him up! I have never in all my eleven years in pediatric facilities seen a nurse so impatient and ambivalent towards a child. I was absolutely appalled by the whole scene.

Shortly thereafter Max was finally brought back to the OR, five hours behind schedule. The nurse and Max were no sooner out of sight when several doctors came out to the waiting room; this is never a good sign. It seems Max’s blood results had just come back and his Coumadin levels were dangerously high. Max had such a high level of blood thinners on board that they were not going to be able to go ahead with the procedure for fear of a bleed out. It only got worse from here. The surgeon told me this could be reversed with blood products but this would take time and the anesthesiologist couldn’t be bothered to waste her time with this part of the plan. So up to this point Max had both a nurse and at least one doctor who couldn’t have cared less about him or his level of care. Although the surgeon wanted to continue with the new plan he could tell the anesthesiologist was not on board so he decided to simply put a band-aid on the problem by shocking Max’s heart back into rhythm. It took a total of about ten seconds; we waited all day for a procedure that took less than a minute and would not be definitive.

The moral of this story is that our first attempt at this procedure failed for too little blood thinners, the second for too much. Moreover the second failure was due, in our minds, to actions that came too late. If the nurse had drawn Max’s blood when we arrived in pre-op at 10am they would have had time to reverse the levels and proceed as planned. If the anesthesiologist had not been worried about being late to whatever else she had to do we still could have finished up yesterday. Instead we’re on borrowed time awaiting the inevitable, a third trip down to PCH to try it all again.

So although the whole experience was frustrating and emotional I need to thank the surgeon and our cardiac nurse, they were both stellar even in light of the fact that they too were just as frustrated as we were by the whole series of events. In the end the one who will suffer the most from all of this is Mr. Max. I still don’t know how I’ll convince him to go back for a third time…..

Pre-Op Update

Yes we are still in the pre-op area waiting for the "first case" to finish before they can take Max back. We've been here for about four hours and if I hear the phrases, "I'm bored" and "I'm hungry" one more time I might just explode.

Pray that I'm able to keep Max from running to the door....or at least as far as the hospital cafeteria :)!

Here We Go Again…..Number 40

Recently we took Max for his “regular” three month Cardiology appointment. That was our first mistake; we had forgotten that with Max very, very little is “regular”. This appointment proved no different. Soon after Max’s EKG was done his cardiologist came in and said the dreaded words no parent of a chronically ill child wants to hear ….”We need to talk.” Nothing good ever comes from a discussion that starts with this phrase.

It seems Max’s heart is in “atrial flutter” which basically means the top half of his heart flutters while the bottom half beats somewhat normally, I say somewhat because the heart rate can be very high to make up for the “fluttering”. All of this is dangerous on so many levels: elevated heart rates and dysrhythmias are never good but people with atrial flutter are often at greater risk for blood clots in the heart. As if this wasn’t bad enough we knew we were in absolute trouble when we were told to “report for duty” at Phoenix Children’s Hospital the next morning at 5:30 am. They wanted us back in less than 12 hours? This must mean it’s even worse than we thought!

Long story short not long after we arrived in pre-op the next morning we were sent on our way for various reasons but most importantly it was realized that Max is super sensitive to blood thinners and the only med they could use takes at least four weeks to reach a therapeutic level. For those of you who follow the blog you may remember our love/hate (mostly hate) relationship with Coumadin last summer after Max’s valve replacement. So here we are on a new cardiac med to regulate Max’s heart rate, blood thinners, drawing nearly daily blood levels, and sporting a 24/7 heart monitor. Life is grand at the Marangella household!

It’s now four weeks later and we will be bringing Max back down to PCH on Friday morning for his 6th cardiac procedure and 40th procedure overall. While we all know I would prefer to do these things at Hopkins we realize that it might be best for Max not to travel in his present condition. We have been assured by both our cardiologist and cardiac nurse, whom we love, that the doctor performing the procedure excels at what he does. So although it is VERY hard to turn your son over to someone you don’t know we are taking a leap of faith and going with it. That’s not to say that I am not an absolute wreck, worse perhaps than I was before either of his last two open hearts but it’s the fear of the unknown, not only ours but the doctors’ as far as their knowledge of Max goes. Hopkins knows Max inside and out and more importantly they know me, these folks don’t know what they’re in for!

Pray for us and stay tuned for more news….

Na, Na, Na, Na, Batman!!

This past weekend Max was the lucky guest of Bruce Wayne, Founder and Chairman of Wayne Industries, and his loyal associate Charles Keller. Our time in the Batcave was phenomenal and we'd also like to thank the Starlight Foundation for making this fabulous event possible for Max.

Is it Max or Robin, Batman's loyal side-kick?

 Answering Mr. Wayne's Call

Although he's not totally convinced, Max took a Spin on the Batcycle

 Everybody took a spin!

Max and a few good friends pose with our generous hosts

Things to Do, People to See, Places to Go

The last of the firsts....Where did the time go?

Ellie's first day of her last year of High School

 

Max's first day of his last year of Elementary School

Max has heart

Delivering toys to the kids in the Cardiac Care Unit at Phoenix Children's Hospital

Max presents the "Roberto Clemente Award" to his friend Willie Bloomquist, shortstop for the Arizona Diamondbacks, in honor of Willie's foundation also at Phoenix Children's named in honor of Mr. Max

 

Halloween

Our Bumble Bee and Pharaoh

Day trips....Lake Roosevelt

Eeeeek! Real bees!

 

Words to Live By

During an e-mail exchange with Max's fabulous 6th grade teacher she reminded me of one of my all time favorite quotes. What I love even more is that she truly embraces this both in her own life and her classroom. Max and I are some pretty lucky ducks to have such a wonderful teacher in his life this year! 

"Everybody is a genius. But, if you judge a fish by its ability to climb a tree, it'll spend its whole life believing that it is stupid."

--- Albert Einstein 

P.S. Another big plus with Mrs. Funkhouser is up until now she's still putting up with me! However, it is only August and Michele is convinced that not even a saint can make it until May with me. He should know we're married 17 years today :)!