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!