Please Come To Boston: Take #8 CANCELLED

It had all been planned quite nicely. The very necessary but ever so feared throat reconstruction surgery had been cancelled in favor of a much less invasive treatment, dilation.  This procedure would happen on  on September 6th and require only a one night stay in the ICU if all went well.

The pre-op clearance was scheduled for today. A simple zip to and from Boston. A routine check to make sure that Mando was well enough for surgery, anesthesia, and the likes. Mando has been pre-oped many times before. A synch. What could go wrong.

Yesterday, Mando got sick. Sore throat, congestion, cough...a full blown upper respiratory viral infection.

THAT IS WHAT COULD AND DID GO WRONG.

What are the odds in that I wonder???

I was with Maria yesterday and we decided there was no way he would pass the pre op as sick as he was. I would cancel.  I called today to reschedule. The surgical scheduler is out to Tuesday. The receptionist told me it is a rule that they don't reschedule for at least 6 weeks. That would be October.

I have no belief in coincidences.  I look to Mando and wonder what his little soul is up to now. I trust it is for the good of all.

Illness strikes in time to cancel surgery

Mando Paints the House

Next to playing the one thing that Mando loves to do more than anything in the world is working. Mando is obsessed with working. Perhaps because of the many obstacles, he faces he is determined to find ways he can be useful. Then again, maybe working is just a natural born passion (like my Dad). I am not entirely sure, even though I am his mother, Mando remains a bit of a mystery to me. I assure you this. If there is a job to be done. Mando will be the first one to raise his hand.

I am grateful for that!

Water-Watters

It was not yet 12 hours past when we toasted with our ceremonial Eclipse Water that I received a telephone call from Boston Children's Hospital. It was Dr. Watters.

Dr. Watters called to discussed Mando's upcoming airway reconstruction. She herself had spoken with all the other important players in Mando's medical care. Dr. Watter's also discussed Mando again at a conference the evening before ( while we were drinking our eclipse water I presume.)

"I'm just not comfortable with doing a big surgery like that on Mando. If the graft doesn't heal properly due to his leukemia he'll end up with a tracheostomy.  If he has to have a bone marrow transplant they will be in and out of that airway, I'm too afraid it wouldn't be stable. I would like to try going down one more time and see if I can't push it out a bit or remove any more tissue. I want to at least try. We will just have him stay overnight and maybe coordinate a bone marrow biopsy while he's under anesthesia."

"Push it out? DO YOU MEAN DILATE IT?" I could not believe what I was hearing. I had wished for this forever but was told that ship had sailed long ago.

"Yes, that's what I mean. We can give it a try. I guess I was trying to make it more convenient by not going down one more time, but I must take another look."

"I am all for it as long as you are planning on doing some kind of intervention not simply further diagnostics. This is wonderful." I breathed a sigh of relief. "To be honest I am truly terrified of him having the airway reconstruction. If there is any other way, by all means, let's do it!!"

Perhaps it was just a coincidence that things suddenly turned around after drinking the eclipse water.

Mando measured an inch taller in the morning. When the office called to schedule the surgery, my cell phone rang...that phone has been broken for months. It's still working now.

Eclipse Water

Solar Eclipse 2017

Valentina's bark woke me from a deep sleep. It was an unusual bark slow and uniform....and unrelenting. I opened one eye to peek at my alarm clock it was 2;30 am. It was probably a cat, I thought. Though I did admit it did not sound like her "cat" bark. I laid in bed too tired to move.

 I had gotten home late from work, just in time for Mando's chemo. He and I stayed up and watched a movie together. He has been a night owl since he got sick, I try to keep up with him when I can. I went to bed around 12:30 am and turned on the computer to do a little computer research on the up and coming total solar eclipse. I like to keep up on the myths and lore associated with such celestial events. I drifted off to sleep around 1:30 in the morning.

Valentina's bark sounded decidedly eery. Maybe it was a murderer...if it meant getting up...I suppose the guy was just going to have to kill me.

Woof. Woof. Woof.

Typically, cats, woodchucks, squirrels, garbage trucks, trains eventually pass by and Valentina stops barking. What ever had her attention was not moving...WOOF. WOOF. WOOF. WAS IT A MURDERER??

I decided to open BOTH eyes.

I could see out my window into the backyard by propping my head off my pillow ever so slightly.

I noticed an enormous red circle cascade across the horizon followed by a blue circle... repeatedly.

The eclipse had started, I thought.  The eery barking continued. I closed my eyes and lowered my head. I thought for a moment. Wait a moment....THAT'S NOT A SOLAR ECLIPSE.  I shot upright in bed and opened both eyes. I leaned forward looking out the window. I continued to see the red and blue orbs. Valentina warning me from the living room. Woof. Woof. Woof.  I rubbed my eyes. Am I hallucinating? How would Valentina know that?

 I ran to my window and pulled back my sheer curtains and saw the lights.
THE END OF THE WORLD. This damn solar eclipse, starting in Salem on a black moon during 6 planetary retrogrades, just as predicted.

Not knowing which way to run next. Scared half to death, I decided to stare at the beautiful apocalyptic event unfold before my eyes for a few seconds longer.

Wait...could  I detect rays of light streaming to the beautiful orbs?

OH, MY GOD! This was not the END OF THE WORLD....IT WAS AN AMBULANCE!

I ran to the front of the house and opened the front door to allow the EMT's  in.

My mother, 92 had called them from a phone in her room for having SOB...shortness of breath... I was having the other kind of  SOB. Mom had both kidneys removed 12 years ago. She goes into fluid over load every so often, when it is near a dialysis day. I was very relieved to find out it was NOT the end of the world. Away she went to the local hospital and I went back to sleep and Valentina did too.

Celebrating the Eclipse

Me and Mando at a local spring

Later in the morning Janelle stopped by and came to see what we had planned for the actual Solar Eclipse. I had thought about making some Eclipse Water and Eclipse Tea. Mando and Janelle agreed this was a good idea.

The three of us discussed all the various beliefs and traditions held about the eclipse. We all agreed we liked the one that viewed the sun and the moon as lovers, therefore, you should go in your house and not view the eclipse, instead sit in sacred silence.

So it was.  Prior to the eclipse, we gathered spring water and place around our sacred circle. Held a ceremony of releasing that included a Bon fire and headed inside.

We sat. We fasted. We meditated. We made our own tradition.

Mando gets spring water to make Eclipse water

Rosemary and Sage

Janelle and Mando at the spring

Later we drank that night we drank the water and the solar eclipse tea we made.

It was soooo good.

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.

Poor Communication Likely Root Cause of All the World's Problems

Contrary to what you have been told, smoking is NOT the cause of all the problems on Earth. Though popular belief blames smoking for everything from halitosis to inflation, I think it's evil has been unfairly notarized.

If you want to pick out today's Big Bad Wolf, in my opinion, it would be poor communication. I should point out that I had an English professor that once wrote on one of my papers to never write "In my opinion".  He said it weakened my argument and I should just come out and say what I mean. I guess that was his opinion.

IMO. That's the first problem. For the longest time, I read that as Eemoe, and had no idea what it meant. Why ? Because I am a GROWN UP.  Now that sounds rude, right? That's because I am typing and you cannot hear my tone of voice or see my gestures. So much can be misinterpreted by the written word. By GROWN UP, I actually mean OLD. OLD-Once Loved Disco, Yeah, THAT Old.

Language barriers resulting from a variety of differences in our backgrounds is one part of the problem.

Communication or the lack thereof becomes particularly problemsome in our relationships. Whether it be with our partners, our family, our friends, our neighbors, our coworkers, or our business associates you can rest assure when problems arise there has been a breakdown in the line of communication.

Honest and direct communication is another part of the problem as is follow through with communication.

 Remember the telephone game as a kid? Well, perhaps the people that Once Loved Disco do. The message you start to relay is seldom the message received after it is exchanged through many parties. I would say today that many messages seldom reach their final destination.

Our messages get lost in an ocean of other messages and never seen or heard from again.

Our Institutions illustrate this on a grand scale from Education to Government, to Every Industry including Healthcare.

When I gave birth to Mando, I was on emergency medical leave from Grad School. I was going to be a social worker at the time. A professor from my school called to check-in on me. I spewed my frustration of the current management of both Mine and my baby's healthcare. I was new to the game then and I was astounded. The professor told me that the way that our healthcare system is run results in the fatalities that would be the equivalent of a major plane crash every day of the year. Completely unacceptable and completely avoidable...The culprit..NOT CIGARETTES.Communication errors. I don't know if it was fact or his opinion...but I believed him.

When Mando and I arrive at Boston on Tuesday for our surgical clearance from the pediatric pulmonary department everything would have been just dandy except for the complete breakdown in...you got it...communication.

I had spent numerous phone calls arranging a prior approval and secured a number to call to ensure all testing needed at the visit would be included on that approval. When I arrived the approval was canceled, the insurance company listed wasn't mine, the wrong primary care doctor was listed, as well as the wrong referring doctor. None of the chest x-rays or ct scans were sent from the oncologist's either. When Boston tried to call the insurance company and the oncologist they got answering machines.

Mando could not have his airway clearance test done nor any other tests for that matter. We drove 3 hours to one of the best pulmonologists in the nation at the number one leading children's hospital and were stopped dead in our tracks because messages didn't get through.

I wasn't even angry. This has become so commonplace its cliche.

Mando awaiting surgical clearance

We have the latest technology. The brightest and best educated.  The best medicines and the advanced research. Yet we can't get a fax sent or a phone answered.

Hate the smokers if you will but if you really want to save lives lets all learn how to fix this blatant ongoing communication problem. IMO, of course.

Eyes Wide Open

I have traveled to Boston enough times at this point that I swear I could drive there with my eyes closed, in fact, Mando always has. That is up until this last trip.

Mando was wide awake the whole drive both going to and returning from Boston. This made for an interesting trip. 3hours each way, a lot of ground can be covered, literally and figuratively.

Mando began discussing when we would be staying in Boston next. He mentioned, "for 5 days."

I corrected him "Mando,  we will be staying for 15 days when you have your surgery. You will need to be in the ICU for 10 days and on the regular pediatric floor for 5 days. "

"I only heard about the 5 days. When is this happening?"

"It hasn't been decided. That is one of the reasons we are going to see pulmonary today, to have their opinion. It is possible that we are looking at the end of September?"

Mando Gasped as he heard this. His eyes widened and then filled with tears.

"But...But...But what..." he tried to speak but was too choked up to get the words out. He swallowed repeatedly. With all the effort he could muster he forced out  "BUT WHAT ABOUT SCHOOL?"

A tear streamed down his cheek, and with that tear, my heart broke wide open.

Few things, if any, will ever reduce Mando to tears. One thing for certain is being kept from other children. The other thing is being separated from his family.

Pandora's box was open.

 For three hours the discussions continued in a manner not at all common for Mando, perhaps long overdue. If ever his sense of truth and honesty and justice were visible it was during these heart-wrenching conversations.Yet even for him, these topics delved deeper and were more profound than I have ever recalled. I momentarily felt as if I were meeting Mando for the first time. At least a side of him I have never known.

We were about 20 minutes outside of Boston and Mando announced to me that he thought it best that he stay homeschooled until after the winter break. He assumed he would be healed from the surgery by then but if not he would be willing to wait longer.

"I really would like to have all of this behind me. I would hate to miss so much school going to so many doctors appointments." Mando seemed content. He had worked through his angst and ended at a better place.

When we arrived at Boston Mando said "Thanks, Mom. I really enjoyed talking with you like that. We should do that more often."

We did...on the 3-hour drive back home.