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

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.

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.

Matters of the HEART

 I AM A NURSE.

Not just any kind of nurse, I am a psychiatric nurse...to the core. I take pride in that. I never planned on becoming a nurse. It is by far NOT my first career. I have no idea if will be my last Life is strange like that.

When I was beginning nursing school the instructor asked for the students to raise their hands for which field they should wish to follow, Critical Care, Labor and Delivery, Operating Room, Pediatrics, and so on and so forth.  The hands went up. When Psychiatric was mentioned I shot my hand up right quick and my rear end lifted a little out of my seat, as if I wouldn't get noticed out of all the others. I noticed a strange hush. I thought I heard one person giggle, so I looked around, my class.
No one else raised their hands.

I was alarmed. I let out a gasp and said "REALLY PEOPLE?!! JUST ME??? I THOUGHT EVERYONE WANTED TO BE A PSYCH NURSE??? Well, I'll be damned." They laughed, and so it was. I graduated and was employed right off the get go as a Psychiatric nurse and remains so to this day. It is my passion.

The field that bewilders me most, that remains beyond my comprehension is Cardiac. I am in awe of the cardiac nurse. I simply can't grasp it, never could. To me, a broken heart is, well the loss of one's love or purpose or pet. That sort of thing. A longing, an emptiness, a feeling of despair or regret or hopelessness about the fracture in one heart of hearts.

To the Cardiac nurse, it has something to do with atriums and ventricles, sa nodes and QRS complexes... oy vey. I mean I get it, but I don't GET IT  get it. It's difficult.

I have an abundance of admiration for the Cardiac nurse.

In my personal life, the heart is a spiritual vessel. It takes a beating...and keeps beating. sometimes it needs a great deal of healing. I keep rose quartz near my heart chakra at all times. Some people would think that qualifies me for needing a psychiatric nurse more than being one. My personal beliefs have nothing to do with clinical practice.

Often when I meet Mando's new doctors. They quickly come around to the part where they say "So I hear you're a nurse."

I always answer the same "I AM A MOTHER FIRST, nurse second. The mother part is the part you need to worry about."

What does this post really have to do with Mando?

HIS EKG...to be continued

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?

Catharsis

"I know what you're going through Ma, I've been there before. It's like you hurt SOOO MUCH that you can't feel anything at all"

My daughter Alyssa was on the phone as she spoke these words. I had spoken with her many times since I returned from Boston and perhaps she had said them before, I don't know. I believe she was deliberately trying to shake me out of the stupor I was in. I was stuck in some form of robotic mother mode.

This time as I heard her say those words it was as if she had put a screwdriver in a lid of a can of fresh vacuum sealed paint. I was the can of paint.

"Oh, Alyssa...." I could say no more. I just sobbed. And sobbed. And sobbed.

"Oh, Mommy I know. I'll be right over" Alyssa hung up.

Alyssa arrived 20 minutes later with a  St  Jude prayer candle and inspirational
bookmark for me. She brought her four children for Mando. Nothing in this entire world makes Mando happier than other children.

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...

Witch Way To Salem?

a truly patient patient 

Mando and I were back sitting in the waiting area for what seemed like a very long time. I was growing restless with ruminating thoughts about the tentative surgery. Mando waited patiently busying himself with a game on his tablet.  Waiting was a situation that Mando had grown accustomed too.

I carried a Pepto Bismol pink form I had been holding to the check out window and explained my qualms.

"I was told to wait here and someone from the surgical scheduling team would meet with us but it seems like it's been an awfully long time. Was I supposed to hand in this form? It would be just like me to sit here all night and no one knows I was waiting."

The woman smiled and took my pink form and hurried off, apologizing for my wait.

2 minutes later a door across the room open and a young brunette smiled and asked "Normando?"

We answer basic questions for the umpteenth time. My nerves were shot. I asked the nurse "Is Salem closer to New York from Boston or further away?"

"It's North of Boston, so I would say, Yes, it is further away. New York is west of Boston. Why do you want to go to Salem?"

"Because we can. Come on Mando, We are going to Salem!"

Fight or Flight. #Mando fights back and  #Mom flights back, it's how we roll.

Don't Cry Over Dropped Forks

It was getting late so rather than eat in Salem we decided to hit the road, not to mention I erroneously wore shoes two sizes too small. We got back in the car and headed southwest with a plan to stop on the Mass Pike before Mando would have to begin his evening fast.

After about an hour or so we pulled off into a Thruway rest area. Sure enough, there was a Boston Market. I thought that would be fitting enough given a Boston trip. Mando and I had never eaten at Boston Market before so it would be the perfect opportunity to give it a go.
                                                                             
I've noticed that when dining in a cafeteria style dining hall people tend to censor their behavior less than let's say more formal venues. I spied a family to my left. A man, his wife a two absolutely beautiful tow head toddlers, a boy, and a girl. The American Dream family. One of the tiny toe heads dropped a plastic eating utensil on the floor. It then that Dream Dad's demeanor changed in a flash. I watched the crimson rise up his neck into his cheeks. Black and gray puffs of smoke began to billow from his ears, which by the way matched identically from the smoke of his new balance tennis shoes as he stomped back to the Boston Market counter to retrieve baby tow a new fork. I wondered what his blood pressure might be and turned my attention back to Mando.

Mando was just licking some mash potatoes that he spilled from the side of his plate. Eating has never come easy for Mando. Chewing and breathing at the same time is especially hard.Managing to get a fork anywhere near his mouth even harder. DROP THINGS? FORGET ABOUT IT! I mean seriously FORGET...ABOUT...IT. That's what we do.  Why on earth would I even care? I am grateful just to see him breathe, that is a miracle in itself, anything beyond that...magic. That's not to say that I don't still try and teach Mando things like etiquette and manners. Sometimes he finds the rules silly. He is patient with me.  "Why must we keep our elbows off the table?"

What goes on in the lives of Mr. and Mrs. American Dream and the Tow Tots is none of my business. Who am I to judge?

I will tell you this, however. I have spent many a moment having envy of the Dream couples of America. What a privilege it must be to take so much for granted. I have spent days on my knees till they were raw and bled, begging the creator to restore some bit of function in my child's body while others had everything and never seemed to notice.

It is a privilege you would be wise to count amongst your blessings...

All in all, I count Mando..the way he is as one of my GREATEST BLESSINGS EVER!

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.

We Hit the Highway in Search of an Airway

Today we set sail for Dr. Watters at Boston Children's Hospital. We hope for good news. A plan. A safe reconstruction of Mando's airway.  Mando has been living with an inadequate airway since he was born at 2lbs 11oz. The first attempts to place life-saving artificial ventilation most likely caused the damage that must be fixed now.  We journey in hope...

Today is 8/8/17 (1=7+8) and we are traveling to 333 Longwood Ave 3rd floor. Very auspicious!!
I will take it as a good sign.

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.

Drop the Pills and Let's Head for the Hills

It was last year when the doctor confirmed my worst nightmare. Mando had Chronic Myeloid Leukemia. Knowing that is one thing. Watching then administer chemotherapy for the first time is quite another. The medical staff cleverly arranged to begin the infusion while I was out of the room. I returned to the horrible site of this toxic substance pouring into my baby's body. I could scarcely breathe. My mind screamed STOP. I trembled for I knew this was for the best. I couldn't stop a thing if I wanted to. I hated every single solitary millisecond of what was happening. I was helpless to do anything about it. In my heart of hearts, I wanted to rip every IV, port, catheter, and tube from his frail little body with my bare hands. I wanted to snatch him up as fast as I could and head for the hills, where no one would ever find us again... I didn't. I stood. I watched. I cried. I prayed.

Mando just started the second week of his third chemotherapy. The last two drugs did not do as we hoped. Mando takes his chemo twice a day. He must fast for 3 hours with each dose. He is supposed to take this for the rest of his life. Mando does not complain. He is so utterly NOT  bothered by it that you would swear he was taking a couple of aspirin. I still hate it. Every day in my mind I throw those pills as far as I can and grab Mando and head for the hills. Every day I know we run but we could not hide because Leukemia would follow us. Instead, I stand by. I watch. I cry. I pray.

Chemotherapy if you must inhabit my little boy's body then I beg you, please to do your job, fight as hard as Mando does and once and for all kick that leukemia's ass.