… an update on Miss E

Have you ever walked through the hallways of a Children’s Hospital?  Have you heard the stories that those walls have to tell?  Have you listened to the sound of a million dreams that echo through those corridors?  What would those walls tell us, what stories would they share?  Could you stand and listen to the tales of hope and pain, healing and yes, even death?  Close your eyes as the walls begin to talk, do you hear the sounds of children saying I will beat this,I will walk again.  Do you hear the sounds of parents saying my child will live.  Now open your eyes and tell me what you see.  Suddenly the faces of those passing you take on a new look, the sounds that you heard upon entering are very different than what you remembered.  The voices of the walls cut through the everyday noises to tell a story of a child, of a parent, of a family.  These walls hold the stories of the true heroes, the children.  What they must endure, how they desperately long for a normal life outside of machines and tube and hospital gowns.

The sun was just waking up yesterday morning as I walked through the familiar doorways of Arkansas Children’s Hospital.  The hot summer sky was open and waiting for its sunrise that I live for now.  More than ever I find myself longing for the first ray of sunshine that lights up my house in the mornings.  Life has been very hard for our family over the last few weeks.  Elizabeth is struggling like I have never seen before.  There is no sleep, the days are flying by and the nights are upon us which has brought on hours of heartache and frustration as I watch her tiny body fight the pain that has now completely taken over.  The crying out, the clenching of her fists and the involuntary kicking of her legs against her wheelchair have almost become unbearable to watch.  Desperation is not a word that follows me, but now has settled heavily over me.

What we know is that there is a hip, her left one that is completely dislocated and her femur has lodged itself above the dislocation causing this extreme pain.  The only way to stop the pain is to remove the source, meaning the hip and femur.  There is no need to replace it as it will only come out again and again and again.  I sat vigilantly by the phone waiting for any call that would give us the opportunity to be seen by Ortho before her scheduled September appointment.  When that call came in several weeks ago I didn’t hesitate.  I kept a journal of her days and nights, made sure to video anything I was afraid she would not do on command once we were in the clinic.  There would be days upon days of no sleep.  Sometimes she would never close her eyes and others when 25 minutes of rest would become the answer to my prayers.

The teams that we have in NWA and LR are amazing.  I am blessed to have this group who loves Elizabeth and truly wants what is best for her.  There is a small, a very small handful of doctors on our team who remember what the practice of medicine was founded on … the patient.  Those who know our family know that my dad is a surgeon, a brilliant surgeon.  His training came from only the elite of men in his field, his mentors are men of the finest character there is, he is a true gentleman of his practice and most likely one of the last few left that remember why he became a surgeon … to help those in need.  I had the extreme privilege of walking the hallways of our hospital with my dad many times.  When the phone would ring in the early morning hours I would sit and wait for the hallway lights to come on and see him standing in my doorway asking if I wanted to go in with him.  My answer was always yes.  I never had any intention of becoming a doctor or nurse or have anything to do with the medical field and he knew that, I just loved watching him work.  Not in the operating room, although I have had that opportunity and to watch your dad work on the human brain is nothing short of amazing, but what I loved most was his bedside manner.

Growing up in a town of 100,000 and your dad being one of the only surgeons in his field you get to be known.  What I learned was that you either loved working with him or hated it.  He was intense in the operating room and demanded perfection.  Wouldn’t you want that from the man who was cutting into your brain?  There was no room for error and expected his team to be 100% at all times.  But what so many didn’t see was a man who knew that when he walked into the waiting room to meet with the family of the person he had just left, sometimes better and sometimes not; a man who knew that when he walked through the doors of a room he was not just the surgeon who had probably saved this persons life, he was the one person that could ease the anxiety, answer the questions and help these families, this patient just by a kind word, the power of a touch to the hand or taking the extra time to sit with a mother, a wife, a sister of someone they loved.  He never stood over the family sitting down or the patient in the bed.  He always sat down, alway gave them his full attention and never walked away until every question had been answered and the patient and family were okay.

This is where I get my passion for helping others, straight from that man down the hallway.  So when Elizabeth was born I knew that I was going to be hard on every doctor that would come into her life.  I almost felt sorry as new members of our team would come on board and often wondered if they were pre-warned, I have since learned that yes, some were.  This makes me smile …. I have come to realize over the years that the fine art of medicine no longer exists.  Politics, our government and big medical companies have paved the way for our healthcare.  How many patients can you see in one day, how many surgeries can be scheduled … the patient is a number, a bar code and no longer a person.

When Elizabeth was born the nurses taped an index card above her bed that read …

Baby Girl Bed 5

I crossed that out and wrote …

Elizabeth Mackenzie Forester

And just like then, I always make sure the doctors know exactly who this little girl is. So many times our doctors come in, some shake my hand and say hello and then go straight for the medical garb … I have a few that don’t even say hello and just start right in.  But I alway say hi, extend my hand and also tell Elizabeth to say hello.  They need to know that this is a beautiful little girl who has a family that deeply loves her and a support base that exceeds far beyond the sliding glass doors of ACH.  In the almost 12 years of this little girls magnitude of days that she has spent with doctors there have only been 2 that I can honestly say I did not like.  There is now 3 after this week …

In true kid fashion, Elizabeth was on her very best behavior for her appointment.  She laughed, blew kisses and even allowed him to move her legs and hips … something I can’t even think about doing without a major meltdown.  He looked at me and asked me again why I was here.  As I went on to explain, he cut me off mid-sentence and said, “it’s not that I don’t believe you but she seems fine to me.”  I’m not sure if I wanted to send him flying out the door on his doctor stool with wheels or pinch Elizabeth when no one was looking just to get a tear from her eyes!  I showed him my journal, the videos of our late nights of crying all night but he was unfazed.  To him Elizabeth was a number in his day and he had yet to meet his quota.  I was a worrisome mother looking for a miracle that he had no concept of how to give it to me.  I was a white piece of paper with a hundred little boxes, of which 3 were checked and I assumed they were the most expensive services to be billed.

I love this picture of Elizabeth and I … this face says it all, she has had enough of appointments!!

Our last appointment of the day was with my favorite member of our team.  He reminds me so much of my dad in that he remembers why he chose to practice medicine many years ago.  He always speaks to Elizabeth first and waits for her to respond in her own way to him.  He always, always asks how I am doing.  He knew we had a rough start to our morning and that there were a few new members of our LR team I was struggling with.  I had a list of questions and concerns of what we were going to do for Elizabeth and since I rarely do this with him he knew I was desperately seeking answers on her care.  He was so good to us and took my list and sat down and actually talked to me.  Together we came up with a plan for her care so for all of those who have been following us on Facebook, emailing and calling asking about next steps for Elizabeth here you go …

We have decided to wait for the surgery.  Elizabeth is still growing and if we take out hips and femurs now we could cause future damage requiring more surgeries down the road.  For this I am extremely thankful as that this will save Elizabeth a lengthy and painful surgery/recovery.  The surgery is inevitable, we know but for now we are very happy about the decision to wait.  We will work very closely with our medical team here in NWA to tweek her pumps, medications and therapies to help loosen her tone which is the root of the problem.  As she is growing her body is becoming more tense, lending to greater spasticity which is causing the extreme pain.  So here is how I can describe what is happening to her …

Draw your knees up to your chest, now wrap your arms around your legs and then clinch your fists.  Now bite down as hard as you can on your jaw, wrinkle your nose and squint your eyes … don’t go easy on yourself, make it hurt!  So this is what Elizabeth’s body is doing 24/7 in her most relaxed state so I am sure you can imagine what she must be going through when things go wrong, like a dislocated hip.  The hip keeps us from laying her down, the pain keeps her awake.  We have already changed a few meds, added a few extra doses of this and that and have added an anti-inflamatory and we are seeing some positive results!  After almost 2 months of little to no sleep, Elizabeth fell asleep at 1:00 yesterday afternoon and slept until 5am this morning.  She stirred a bit when feedings and meds were due but nothing that didn’t keep her from falling back asleep.  Today we have laughed and smiled, even made a pound cake with Ree! (and Alex!)

Tonight she has fallen asleep at her normal bedtime and so far she seems to have settled in for the night.  Our hospital bed will be delivered first thing Friday morning and so I would venture out on a limb and say things are looking up!!

I can not even begin to thank you all, there are truly no words that can express my deepest and heartfelt gratitude to the prayers that go up for Elizabeth and our family.  There are days I feel like I am on a roller coaster with her … one day we are up and everything is going so well then within hours we are down and feel as if the world is caving in on us.  My friends, your patience and understanding … your continued prayers, kind words and offerings of help are what keep Elizabeth and I standing, pushing through day after day even when we want to give up, so for that we thank you.

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