Sometimes Even Superman Needs A Little Help

Even Superman Needs A Little Help

While at the Pulmonary Department, one of the requests from the ENT was for the doctor to "Maximize Pulmonary Function". The Pulmonologists reported that this would not be possible given his airway...however what we could try is to include nebulized hypertonic saline treatments to his routine.

Mando was excited to get a new device. His nebulizer at home dated back to his birth and if you want to talk about things that were not optimal, his old nebulizer was one.

So we left Boston, with no testing done, but a new treatment that gave new hope. The doctor cautioned us about some problems we could encounter with these treatments.

Optimally, a high-frequency chest wall oscillation inflatable vest would be recommended, but that would require a CT scan and we did not have one available.

We take what we can and chalk the rest up to a learning experience. A big sigh...NEXT TIME. A  tomorrow filled with follow up calls on how to smooth the communication out between parties.

We try something new in hopes it helps Mando, our Superman

Breathe a little easier.

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.

Taking Ownership

Mando reviewing his blood work with Dr. Maria, his favorite oncologist.

Of the multitude of things that have surprised me much one stands out above them all as most unexpected

It was NOT Mando's ability to endure pain. Mando has known nothing but pain ever since the day he was born. It is quite normal for him.While I can not bear to see him in pain he can not bear the same of me. His endurance keeps my tears at bay and that makes him happy. At least I suspect that is how it works.

Likewise, it is NOT how Mando inspires others. Mando has also had this gift since he was a wee babe. His inspiration has something to do with his energy, his eyes, his smile, his essence. It's just Mando. It's nothing new.

No, what truly SURPRISES me is how Mando has taken ownership of his condition. Mando takes his chemotherapy on his own. He sets his alarm for his doses, He manages his fasting. Mando tells me when it is time to order refills. Mando also asks all of his doctors' relevant questions. Mando continually deepens his understanding of how his body works and how it could work better.

Given Mando's brain injury and developmental delay that might surprise anyone.  Mando puts 110% of himself into everything he does. He gives more than he has. He does it of his own free will. He is self-motivated.

Mando is not self-taught, however.  That's where we come in.

 As Mando continues to learn about his  various conditions we manage to teach him an ever expanding pool of knowledge without once having to use using the  C WORD,

OH NO,  NOT THAT  C WORD. That's my favorite word. We use that all the time.

The OTHER C WORD,  the SIX LETTER C WORD...NOT COOKIE, BUT THAT'S GOOD ENOUGH FOR ME!

C IS for Cookie but it is NOT TIME for Cookie

I just came home from work and was greeted by Mando excited to hear about my day.  In an effort to make my transition home more comfortable Mando, always the gentleman, offered me a drink.

''Mom, would you like a can of seltzer or ginger ale?

"Oh I would love a lemon seltzer but they're in the downstairs fridge, do you mind?"

"Not at all" Mando smiled and bounced off but not before grabbing a soft chocolate chip cookie and taking a big bite to kick off our evening social.

Mando made it as far as the kitchen when he yelled back "Mom, what time is it?"

"9:30. Relax you've got another half an hour until your chemo."

"Mom...I ate a cookie"

"Yeah, I know, so wha... oh no... well I guess meds are at 11:30 tonight."

My Mom protested "For just a cookie?!!" (That's a grandma for ya)

""Yes, for just a cookie, He has to fast 2hours before and 1 hour after each dose no exceptions"

                             You can have your cookies but you can't eat em too

Luckily none of this bothered Mando in the least. He brought me my seltzer with a smile and knew the later med time means more time he can play PS4 with Mercury.

Who can sleep through this thunderstorm anyway?