We've been fired

 “Being fired has some of the advantages of dying without its supreme disadvantages. People say extra-nice things about you, and you get to hear them.”

― Howard Zinn

It started out as a fairly simple visit.  

I had my coffee in hand and was waiting with my son getting ready for the visit to the Complex Care Clinic at Gillette.  It was early and getting a grumpy teen to be cooperative at 7:45am is like asking someone to successfully nail Jello to a tree.  

We had been referred to Complex Care because, well my son is complex.  He has complicated medical stuff.  When we started there we were even paired with a specialist with a disability because she was touted as being adept with kids like mine.  We got the same nurse we had while my daughter was there and I was excited to work with her again.  

After I filled out the paperwork and was assured that "Dr. X" could manage all my son's health conditions we were set.  

The first meeting went well.  She seemed to know what to do and was ready to roll.  We were even promised some new services they offered there.  

Then the honeymoon came crashing down.  Our team wasn't returning our calls and the doctor was floundering.  

The doctor asked for a meeting and then admitted that she had no idea what to do with my son.  That he was complex.  I asked if this was not the Complex Clinic and did they not have "complex children".  She stated that she really delt with "less complex" children.  That she did not know what to do with my son.  

By now my son was rolling his eyes and pretending to bang his head on his laptop.  "Mom, didn't this woman go to medical school?"  "Like how hard is it to say give him an IV when he's sick and Benadryl when he has an allergic reaction.  Mom, do you purposely pick stupid people?"   

Thankfully she didn't catch any of that.  I did rephrase the question and ask about getting some support when Marvin crashes.  Her response was, "I just send people to the ER because I am not comfortable dealing with that."  OK......  

Anyway, we were politely fired from Gillette Complex Care.  It was not the first time Marvin was "too complicated" for a department there.  

I probably should be angry, but I'm not.  I'm just disappointed that someone who went to medical school, spent time learning things medical, and advertises being able to handle complex kids is having a parent spend hours doing research, read medical books, and try to dig resources out of a rock so her kid can have a decent life while she can't be bothered to reach out to my son's main specialist who would guide her in pulling it all together.  

It does stink, but I'm also not going to cry in pillow about not having to visit with Dr. X anymore.  I could find better ways to spend my free time.  Like trying to figure out where missing socks go around here.  Or discovering a cure for grumpy teens.  

My son deserves better.  

POTS sucks

 "I'm sorry I am such a burden."  

"Marvin you are not a burden.  You cannot help having POTS.  The only time I find anything about you difficult is when you keep forgetting your shoes and I fall over your size 27 clodhoppers for the 8 millionth time." 

These are the conversations we have.  Five steps forward and five steps back with a chronic illness that really doesn't care if you have plans.  An illness that just when you think you are in a good spot, it sneaks out from behind and hits you upside the head. 

The good news is that thanks to a port, regular IV fluids, and medications he's probably more stable than he has been in two years.  But even in stability we still have blips.  

We had one this past weekend.  We came home from an errand and he went to lie down.  The dizziness, sweating, and seeing black spots tipped us off that he needed fluids and salt fast.  He got them in but still needed more.  I called the on-call nurse for fluids.  Should be a simple fix right? 

Of course not.  I spent the next three hours going back and forth with the on-call intern about what to do.  Of course, I got what we needed, but geez, why does it have to be so darn hard? 

Marvin's doing better, thanks to Mom not taking no for an answer.  I've also sent a long and detailed email about how we need a better plan in place for these things.  I just don't have time to fool around with this nonsense.  The kid has plans and the sooner we have better medical plans in place, the sooner he can keep going out and conquering the world. 

We Don't Know What the Future Looks Like

 I can't speak for the future.  I have no crystal ball.- Micheal Jordan

That is certainly true.  For example, if you had told me one year ago that Marvin and I would be sitting at our local community college discussing PSEO classes, I probably wouldn't have believed it.  

Yet today that's exactly what we did.  

Somehow the kid, who in preschool had a teacher who said he didn't have a lot of potential because of all his behavioral problems, registered for an on-campus tour and drug me down there.  Technically, I'm still his ride, but sitting there and watching him scratch down a few notes and calculate all the big bucks he might make if he decided to move forward with heavy-duty truck technology kind of made me a bit teary.  

He's come a long way.  He still has medical issues and requires some support, but at the same time seeing how far he's come just never ceases to amaze me.  

I don't know what his future will hold, but I have no doubt that whatever it is, it will be amazing.  

Marching to our new normal

 The only normal people are the ones you don't know very well-Alfred Adler

Well normal would not be something we are well known for around here, but our not-so-normal is becoming something we are getting used to.  

The big hulking human (well at least to me, I'm 5'2", and everything over that is huge) has decided to keep his doctors scratching their heads.  To be fair, he always had medical "stuff", but it was only in the past 3ish years we got names to them.  POTS and MCAS have been the all-star line-up.  

The worst part was getting shuffled around and blown off.  We even went to a highly recommended pediatrician and she suggested we put my son in an eating disorder clinic.  Yeah, I'm sure that would cure POTS in a heartbeat.  

So anyway, my child WITHOUT an eating disorder finally was seen by a specialist who knew POTS and teamed up with our local cardiologist.  It was magic and stuff started happening.  They actually listened to Marvin and came up with a plan to help him. 

Marvin has a port now and gets IV fluids twice a week.  He is on specialized medication to help his MCAS.  For the first time in years, we have something I had not thought possible.  Stability.  

At his doctor's appointment, his specialist commented that this was the first time in three years that Marvin was stable.  Not only stable but growing and thriving.  I wanted to hug the doctor but he said he hates people, so I just shook his hand instead.  I'm pretty sure he washed it after that.  

No new medications, no new therapies to add for this at least, and NO VISITS for 6 months. I am beyond thankful.  

The one thing I have learned with my kids is that you can't give up.  You have to fight.  Even when you are worn out, just keep fighting.  Because Marvin deserves more than subpar services.  All of our kids do.  

After a longer than normal pause........

“When you feel the pressure to respond.. know that it’s not the right moment to respond.. pull back and pause, reflect, re-think"-Jaya Bhateja

It has been a while.  I kept telling myself that today I write something.  That today kept getting pushed back over and over.  

Honestly, my heart hasn't been in it, and after losing Cary Lynn part of my voice died that day as well.  I know that sounds incredibly melodramatic, but it's true.  She was a tiny human, but she made a big impact.  

She still lives on.  In the organ donations, the speeches I give about her impact at local organizations, and in a nifty article in the Journal of Pediatric Ethics. Also, she is part of the Born Able book series. She is enjoying a highly active afterlife, which I believe suits her just fine.  

As for the rest of us, life has never slowed down.  I think it was a well-meaning, but mistaken assumption that things would be "quieter" after my daughter passed and that I would get my well-deserved parental rest, sitting quietly on the sofa eating bon bons and watching bad reality shows. 

With another medically complex kid in the home, my own health issues, two dogs, a husband who changed jobs, and no health insurance for a month while things flip over, and my advocacy work I think I am just as busy now as I was before.  If not more so.  I have told my husband at this point I will rest when I am dead.  With my luck, someone will track me down in a seance and remind me that I left that load of laundry in the washing machine and what should we eat for dinner.  

Anyway, I think life will always be busy for me.  When self-care is mentioned by my medical team I snort and ask when they are going to come to my house and take care of things so I can do this mythical ritual that they speak of.  Although not having insurance this month has been great, because they can't bug me so maybe I will consider that my self-care moment.  

I'm going to try to get back into writing more.  A good friend and I talked about it and I realized about a week ago how much I miss it and how many things have happened in the needed pause.  Thanks for being patient with me while I pause.  Hug your family tight too.  Tomorrow is never promised.  

The Long Winding Road

Not Everyone Will Understand Your Journey. That’s Fine. It’s Not Their Journey To Make Sense Of. It’s Yours-  Zero Dean

That's the truth of this roller coaster ride we have lived on for the past year.   Cary Lynn has more than kept us guessing and hopping.  Every time I opened up blogger I would find myself just staring at a blinking cursor.  What do I write?  

After my last post, big surprise, we ended up back in the hospital again.  

Sigh.....  

At that point the doctors had a serious conversation with me.  First the floor doctor, then pulmonology, then genetics, and finally her Palliative Care team.  

It started out the same way.  Pulling up a chair next to me, getting out tissues, wringing hands and awkward throat clearing.  An uncomfortable pause.  Shuffling of feet.  The hum and buzz and beeps of machines.  

"Mrs. Fields, we can't keep going on.  Little Cary Lynn should be at home, not here every month.  This isn't quality of life for her.  There is nothing more we can do.  Why don't you take her home and enjoy your time."  

I stare back and glare at them.  My eyes hold anger and accusations.  All these pretty speeches about we are going to fight and lick this.  

"What do you mean?!?", I glare harder, "What happened to we are all fighting and never giving up?  That you have this all figured out here??  What am I supposed to do, take her home and let her die?!!?" 

The silence that followed answered it all.  

Apparently, yes, that was what they wanted me to do.  Not one of them could meet me eyes.  Cowards, every last one of them.  

So we took her home and signed hospice papers two weeks later.  I was still mad and not on super good terms with our fearless team, but honestly Cary Lynn has always been a medical mystery.  This isn't the first time the world has thrown in the towel.  

Meanwhile, we were just trying to figure out how to pick up our broken hearts.  Trying to help our son understand this new season.  Nights of him crying about the anxiety of it all.   Managing our own pain.  Waiting for the shoe to drop.  

Once again, Cary Lynn had her own agenda.  While hospice breathed frequent messages of doom and gloom Cary Lynn started to do something they didn't expect.  She decided to live.  

That really looks like a kid who is on her last legs, right??  

Then she really blew their socks off.  

My baby turned 10.  

Then she had the audacity to make it to Halloween.  Gasp.... 

So at this point the medical establishment admits that they may have been a bit wrong on her expiration date once again.  

Don't get me wrong, she's got a lot going on.  We are also still in hospice.  She has had some hitches, but we are all learning how to work through them.  She still has mito and pretty weak lungs and unhappy kidneys.  But despite it all my little one continues to fight back.   

As for the rest of us, we are still moving forward.  I'm planning ahead.  For Thanksgiving, Christmas, and New Years.  I am positive that Cary Lynn will be there.  I won't let fear of the unknown define us.  That's no way to live.  

My daughter isn't a quitter.  Neither am I.  We will meet the future head on, no matter what it holds.  

Sorrow and Joy

 We could never learn to be brave and patient , if there were only joy in the world- Helen Keller

I'm sitting in the kitchen on a hot June night.  It's a typical evening.  Marvin is yelling at his video games.  Cary Lynn is snoozing.  She's been on sleep strike for 5 days and it finally has caught up with her.  She sounds like a big bumblebee.  

I'm hoping that I can finally write everything that has happened since December.  Every time I sat down to write a post I either started to cry or have such vivid flashbacks I get physically ill.  But I can't pretend away the last six months.  They stare at me in the face every time I look at my daughter 

It started in December.  She was more lethargic.  She started to swell.  We went to doctors, pulmonology, and our palliative care team.  I was getting worried.  She was coughing up blood and had unending nose bleeds.  The doctors would say the same things over and over.  "She's fine.  She has pneumonia.  See, the X-rays show atelectasis. Have her take this, she will be fine."  

Finally one of our palliative care nurses came over after I begged him to just look at her.  She was so swollen and sick.  On a cold winter day he told us to take her to the ER.  So we went. 

She was sick and weak.  Her oxygen setting went higher instead of lower.  The floor doctor sat outside our room and put his face in his hands and just stared at the keyboard.  Our palliative care team came in somber and grim. 

"You're not a bad parent if you choose not to intubate her."  They said this gently to me and looked with sympathetic eyes.  But she was fighting.  Fighting to breathe, fighting to live.  I couldn't walk away.  

So we intubated her and found out that it wasn't mucus in her lungs.  My baby girl had a pulmonary hemorrhage and her lungs were saturated with blood.  Her platelets and hemoglobin were at record lows.  She was intubated and got her first of five platelet and six blood transfusions.  

During this time genetics, infectious disease, hematology, nephrology, and cardiology joined the party.  Cary Lynn's heart and kidneys had taken a huge beating and she needed support.  These were dark and scary days.  I would ask why and no one could tell me.  I don't know was the answer over and over again.  

But she started to mend and fight back.  Hard.  The team though for sure she could be extubated and we could go home.  We tried.  Twice.  Cary Lynn's body was just worn out from being so sick for so long.  So we made another really hard choice.  

Cary Lynn got a tracheostomy tube and a ventilator in March.  We spent Valentine's Day, St. Patrick's Day and Easter, over two months in the hospital.  It was scary long and hard.  But Cary Lynn was better right?  

Wellll, I didn't quite think so.  There was something still off.  I asked hematology why she wasn't rebounding in her numbers.  I got a lame butt song and dance.  The brush off.  They told us to go home, she would recover.  

Annnnddd one month later......

So that was about the time Children's specialties decided that Cary Lynn wasn't going to get magically well with a trach.  Gee, go figure..... 

Anyway, we spent another two weeks and in that time she got a port, bone marrow biopsy, more transfusions, and lots of labs.  This time we got some answers.  But not great ones.  

Cary Lynn has Mitochondrial disease.  She has a depletion, which means her body simply can't keep up with her energy needs as she grows and develops.  She has honeycomb patterns in her body.   Genetics is working to figure out exactly what mito she has, but we may never know.  

Here is what we do know.  Cary Lynn gets sick and then her body doesn't have the energy to keep up.  So it simply refuses to make platelets and red blood cells.  It focuses on trying to fight off invaders, which causes a dip in her numbers.  We also know she's much weaker and more frail than she was a year ago.  Mito is a progressive disease that is killing my child.  I can't fix it and it breaks my heart daily.  

She can't physically keep up.  Having a trach and vent take some pressure off her body and allow her focus her limited energy on healing from another round of pneumonia.  Her other labs fluctuate and we make changes in her diet, meds, and routines almost daily.  She can no longer do many of the things that would be helpful to her.  Finding out that intensive physical therapy sessions have been shelved indefinitely was another hard pill to swallow.  

But I also know this.  Even if our time is short she's still Cary Lynn.  She still loves driving her brother crazy.  Playing with her bunny.  Eating cotton candy.  Watching Daniel Tiger and being read to every night.  Unicorns. 

Shannon and I are just taking it day by day.  Sometimes we just take it hour by hour or minute by minute.  I'm spending time making all the memories I can right now.  Because we are never promised tomorrow.  So we are making the most of every day and finding the joy and blessings in the midst of these uncertain days.