Please Come To Boston : Take #7

In Search of Surgical Clearance and hopefully a whole bunch of answers.

He's a Cutie, see?... What QTc?

Baseline EKG

As part of the protocol to take Tasigna, Mando had to have a baseline EKG BEFORE starting this chemo drug.

Mando also had to have an EKG at 2 weeks after starting Tasigna. He had that yesterday.

Mando will have to have EKG's every 3 months while he is on this drug. Mando hopes to be on the drug indefinitely.

The reason for the EKG is to look at the QTc...to watch out for a prolonged QT interval.

Yeah, that's that Cardiac lingo I was talking about...It's all Greek to me. ( Can I still say that? I apologize if that's offensive. )

Yesterday during Mando's appointment we discussed Mando's baseline EKG.

His QTc was ALREADY prolonged.

WHAT THE HELL? YOU HAVE GOT TO BE KIDDING ME? What NEXT?

2 week follow up EKG

I have not heard back about yesterdays EKG yet.

We'll go for an echocardiogram in two weeks. They will take a look inside Mando's heart.

 I am certain they will see a heart of gold.  My Father had an enlarged heart. They said it was because he was an athlete. I knew better. I expect  Mando's to be equally huge.

Dammit..Where did I put my Wonder Woman cape?

Dr. Haver's office in Boston called to tell me I have an appointment on Tuesday the 15th in Boston for pulmonary surgical clearance.

 I already have an appointment with Dr. Boucher at Albany Medical Center. Plus this is the day to have the follow-up PCR drawn and EKG.

Dr. Haver's office told me I could come tomorrow if it would be easier,
at the Waltham office, that's only slightly farther away than Boston.

HA!

While at they want me to do the prior approval...they gave me the NPI number and all...

I think I'll wait until after I finish cooking dinner...

Is This What I WANT?

It was out of her mouth and there was nothing she could do about it except apologize and stammer for new words. Dr. Watters and ENT at the Department of Otolaryngology and (ironically) Communication Enhancement made a bit of a conversational faux pas. I felt sympathy for this gentle soft spoken woman for heaven knows I have experienced my fair share of communication blunders.

Yet her words hit my solar plexus like the punch of a professional kick boxer that on impact shot a whirl or air that lodged as a massive ball in my throat. I could not immediately respond. I knew how difficult it must be for Mando to speak with an airway obstruction.

Dr. Watters had concluded her examination and jointly we agreed that she would move ahead with the airway reconstruction surgery. This surgery would involve making two incisions lengthwise on both the front and back of Mando's trachea and grafting in tissue harvested from Mando's ribs in an attempt to increase the diameter. Mando will spend a lengthy time in the ICU intubated as the graft heals. The overall hospital stay will be 14days. A tracheostomy is a possibility.............

Dr. Watters was closing the door behind her and looked back and asked "Is this what you wanted? Well, umm, not WANTED, Ummm, I mean, ummm...is this..."I wanted to save her but first, only a puff of air escaped my lips. Then I spoke...

"It is what must be done. We have no choice. Our time has run out. It should have been done years ago. It's now OR NEVER."

Dr. Watters agreed and closed the door.

My mind reheard the words "Is this what you wanted?"

WHAT Did I want? ARE YOU KIDDING ME? I DON'T WANT ANY OF THIS?
You know what I wanted. I wanted to give birth in February 2004 to 2 healthy twin boys, 40 weeks gestation, like I was supposed to. No emergency c-section/hysterectomy/ transfusions. No oxygen. No monitors. No g tubes. No Tracheostomy. No NICU. No PICU. NO Cardiac Arrest. No Brain Injury.No bilateral orchiopexy, No tonsillectomy No suctioning. No Nebulizers, No early intervention.  No Pt. No Ot. No speech. No special Ed, No Chronic Myeloid Leukemia, No TKI's, No Oncology, Pulmonary, No ENT. No Albany Med, No St Peters, No Montefiore, No Dana Farber, No Boston Children's...NOT ONE STINKIN BIT OF THIS...THAT'S WHAT I WANTED.

One last look before surgery

and yet it is what it is.  I have spent 14 years trying to out smart the Angel of Death who seems to lurk behind every corner. One painful intervention at a time always to prevent some other life threatening outcome. Not today, AOD, you cannot have my baby. We prepare a defensive strategy and prepare for

Mando's vocal cords

the future...

Mando and I proceeded to meet with surgical planning.

As painful as it all has been I am grateful for all the lessons I have learned from this courageous child.I wouldn't  change that for the world.

This boy may finally get the airway he deserves

ON YOUR MARKS...GPS SET...LET'S GO!

Over the years Mando and I have set out on many road trips... mostly for the purpose of medical appointments.  We used to employ a co-pilot from the family. Now we just use the GPS. Ready. Set. Go.

Yesterday we went to Boston. We were scheduled to meet with Dr. Karen Watters, Pediatric ENT.

This would be our 4th time meeting with Dr. Watters.

Dr. Watters is NOT our first ENT. In fact, she is our 4th.

It has been an EXTREMELY ROUGH ROAD that has led us to this trip.  A long road, with detours and dead ends.

The Search For an Airway Tour has been ongoing for nearly 14 years. The terrain has been bumpy and full of potholes.

Yet Mando endures the travel quite well.

At the outset of every trip, he sleeps until we reach our destination.

With one exception. Mando woke up exactly at 10:00 am to take his chemotherapy. Then he went back to sleep until we arrived in Boston.

Where He Leads I Will Follow

Tomorrow follow Mando and me as we head to Boston Children's Hospital to get some answers.

For now, just follow us on this blog. Just click the button on the right. Every follower brings a smile to this boys face. Thank You and Good Night. Enjoy tonight's moon to the fullest.