29 July 2015

Surgery is over! The day is done.

It's nearly 11pm.  Bennett and I are finally tucked into our beds (well, he's in a bed - I'm on a couch). The hospital hallway light accents the darkness in room.  A little battery-powered lamp that I brought is hanging like a nightlight on his IV pole.

It's fairly quiet now.  But it's been busy all day since Bennett woke up from surgery late this afternoon.

Thankfully, the surgery is done and everything great.  The ENT not only found mucus in Bennett's sinuses but also nasal polyps and puss, particularly blocking his ethmoid sinuses.  All have now been cleared out.

Unfortunately, nasal polyps are common in CF.  Not all CF patients that have polyps have to have surgery but sometimes, like in Bennett's case, it's necessary to relieve the pain. Nasal polyps are basically swelling of the lining of the nose.  They are thought to be caused by allergies, infections or chronic congestion, although exactly why people with CF get nasal polyps are not fully known.  They are often characterized by "smooth, pale, almost translucent mucosa on a pedunculated or sessile base", according to the website Medscape.

For those CF mamas who have never seen one, here is a picture of one of the polyps they found in Bennett.  See that clearish looking thing in the middle top?  Weird.

The doctor has requested extensive testing on the mucus and tissue she collected today to check on any infections Bennett might have.  Bacteria loves to make its home in thick mucus so testing will determine what we do from here with regard to further treatment and antibiotic use.  I cannot even express how thankful we are to have gotten this surgery.  It's clear he absolutely needed it.

After Bennett woke up from surgery, he was taken to the 4th floor.

Shortly after he woke up, Brian returned home to pick up Avonlea and Oliver to bring them back for dinner as a family.

We have hospital family tradition of enjoying a meal and some time together as many days as we are in the hospital.  Not only does it allow us to see each other (me with the other kids and daddy with Bennett) but it also gives our non-CF children a chance to see what Bennett goes through.  I think it's important that the hospital not be a mythical thing that Bennett visits and then magically returns home from.  Instead, Brian and I want Oliver and Avonlea to see both the positive and negative things about the hospital and about their brothers experience.  We also know that seeing his siblings is a normalizing experience for Bennett and something that brings him much joy.

Avonlea shares her blueberries with Bennett.
Visiting hours ended at 8pm so for the last 15 minutes of our time together, the five of us went downstairs to visit the Scott and White McLane Children's Hospital's healing garden.

There, we were all able to watch a helicopter take off.  Oliver enjoyed getting to push Bennett in the wheelchair.  Bennett would have normally been able to walk but during surgery, they weren't able to get the IV to work in his arm.  So, they put it in the lower side of his foot instead.

Watching a helicopter take off.

Big brother has fun pushing his brother in a wheelcair.
Once we said goodbye and goodnight to Daddy, Oliver and Avonlea, the Respiratory Therapist came in to do treatments.  Bennett's nose is still bleeding so we encouraged him to breathe through his mouth, rather than his nose.

I began shutting off the lights and preparing Bennett for bedtime to begin after he finished watching the Lego movie he was watching on the hospital TV.  But just as the movie was ending, in walked the ENT doctor with two residents with her.  Apparently they had just finished in the OR with an emergency.  I certainly felt compassion for them.  It was obvious they had been working all day.  And, of course, they will be the ones in our room at 7am for their morning rounds.  The ENT was pleased with how Bennett is doing.  She will come check us in the morning and will hopefully discharge us then.

I am hoping that Bennett will stay comfortable throughout the night and sleep through any interruptions.  He is moderately annoyed with having to sleep with an oximeter on his toe and an IV in his foot.  But he is trying to be patient.

Tonight, Bennett, surprised that the nurse just comes in and out of the room as she pleases without explicit permission, asked me, "what if a robber comes in our room tonight?"  I explained to him that an army of nurses will be awake all night long, sitting at a desk outside of our room.  He sat silent.  I went on to explain that the nurses, who will be awake all night long, will sleep tomorrow during the day while we are out and about and eating lunch, etc.  His mind was blown.  And then, a 5 year-old's connection:  "Nurses are like owls."

Thankful for nocturnal nurses who will keep us from robbers tonight.
Goodnight, hospital.  See you in the morning.

Bennett is in surgery.

Bennett's day started out well.  Although, in the van on the way to the hospital, he became very irritated.  Frustrated he wasn't able to reach something from his carseat in the car and angry that I wouldn't pull over immediately to help him, he belted out cries of anger and disappointment.

In general, Bennett has struggled the last week with more outbursts and crying fits than usual.  It is likely that he is right in that emotional place between baby and child when responding to strong feelings.  But I also think his headaches and consistently being in pain may be playing in to his more recent behavior.

This morning, when Bennett was so upset in the van, I tried to stay very calm and connected to him.  It's easy to get caught up in the chaos of packing for the hospital, taking care of the children, making sure we don't eat past the time the nurse told us, etc, that how Bennett is doing can get missed.

Recognizing he might just be out of sorts because of today's surgery, I just started calming saying to him through his cries, "Bennett, you are ok.  You are alright.  You are going to be ok."  He continued to throw his head back and cry out.

When he finally calmed down enough to hear what I was saying to him, I ask, "Bennett, are you scared about your surgery?"

He nodded and said, "yes."  A minute later, he calmly asked almost with surprise, "why did you just ask me that?"

I explained, "well, I just wondered how you might be feeling today since you know you are going in to surgery.  You told me this morning that you had had a dream last night that had made you scared and sad.  I just wonder if you are feeling that way about your surgery today?"

He looked out the window quietly.  Then his lips began to quiver as he teared up and said, "I'm just having a rough day today."

I empathized and was eventually able to pull over to help him get the items in the car he was wanting.  He calmed down and became distracted in play as we drove the 30 minutes drive to the hospital.  But I was glad we were able to connect on his feelings about surgery.  He might act disconnected at times.  But I know he's like all of us, scared and sad inside.

I never saw another sign of anxiety, even as they were wheeling him in to the OR.  I hope my acknowledging his fears helped him feel cared for.

Bennett went to the operating room at 12:45pm.  He was given Versed to make him loopy and help him feel calm.

We just received a call from the OR nurse stating they just got started on the surgery. We hope to hear something in the next hour or hour and a half.

Getting to choose the scent of his laughing gas.

Playing with Daddy while he waits.

Feeling loopy on the way to the OR.
One other tidbit that I want to share is that when we began the admitting process for surgery, we were introduced to our nurse, Lacie.  Upon further conversation, the nurse and I realized that we had a mutual friend.  Our friend Kayla, who I hope to blog about in the coming days, has done a tremendous job of sharing Bennett's story with others and communicating our need for a cure.

A picture with Bennett's nurse after he went back.
It turns out that our sweet nurse today is one of the people who learned from Kayla of Bennett's story and who, having not yet known us, donated to the CF Foundation on our behalf earlier this summer.

This morning, this nurse said in surprise and joy, "When I saw his name, I thought this might just be the infamous Bennett Gamel."

What a gift that was for me - to meet our nurse who, without realizing it, already knew of Bennett, his story and our need for a cure - who, without knowing us, had already given financially to help Bennett get his cure - and who already had compassion for her patient before he ever walked in.

When Brian and I learned about our nurse's kindness, we were able to thank her in person for what she had done for us, even before she knew us.

Big boy all ready for his surgery!
How thankful I am to have experienced God's providence today.  He is near and I can feel it today especially.

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8

28 July 2015

Surgery Pre-Op Complete; Surgery Tomorrow!

Yesterday, I took Bennett back for another Pre-Op appointment. (Our first pre-op appointment had been just over 30 days ago so it didn't qualify for this surgery.)  It's hard to have to redo work that had already been done in order to do work that was supposed to have been done.  But I am thankful for a pediatrician who has a very tender heart and was willing to do whatever she could to get us what we needed as easily as possible.

Bennett checked out well so we are cleared for sinus surgery at Scott and White McLane's Children's Hospital tomorrow morning.  Surgery is planned to begin at 11:30am.  It should take no longer than 3 hours.  As expected last time, Bennett will be admitted overnight for observation to make sure he has no trouble breathing.

It's been a very long two weeks for Bennett.  He's been on daily pain meds to cope with the pain.  At yesterday's pre-op appointment, Bennett complained about his head was hurting.  "Where does it hurt?" I asked.  This is what he showed me:

Poor little guy.  I really hope he feels better immediately after surgery!  

Bennett's CF doctor ended up calling in some antibiotics and steroids for him about a week ago to help him cope with the pain and prevent any potential infection while we waited for approval for surgery.  This did seem to help some.

Despite his somber face in these pictures, Bennett is very pleased to get his surgery.  Brian and I are looking forward him feeling good again.  I also feel a sense of worry.  We thought everything was good to go last time and we were blindsided. I think things will go without any problems this time.  But a part of me worries: what do I not know yet?

Life with CF is always a little bit of "what do I not know yet."

I wanted to share just how meaningful the amount of love, support and encouragement that we have received over the last two weeks has been for our family.  Thank you for each "how are you feeling" and "I heard what happened."  It means a lot to know we're not alone in fighting for Bennett.

I will provide updates on Bennett's surgery tomorrow!  We can do this!!

26 July 2015

Happy 2nd Birthday, Avonlea!

Happy Birthday to the baby of our family!  

Our littlest love turned 2 yesterday, which is hard for Brian and I to believe!  What a joy she is!

Avonlea is charming, tender and fiercely independent.  She is peaceful and patient, confident and kind.

Her favorite things to do are reading books, playing with puzzles, getting in to Bennett's Legos, pushing her baby in the stroller, wearing her Mama's shoes, singing "Let it go" with full abandonment, climbing and swinging.

Avonlea and Bennett are the best of playmates.  He often makes her laugh and loves play wrestling with her. She tends to look to Oliver to guide and teach her, especially when she's in need.

Avonlea, who arrived after Cystic Fibrosis had made it's presence in our family, has always seemed like the rainbow after the storm.

She doesn't know about CF yet.  She just knows that she likes to wear Bennett's vest in the mornings and rushes to hop up on the couch every time we pull it out for Bennett to put on.  She knows that Bennett's medicines sure look like the right size to put in the fish tank to see what happens.  She sees Bennett cry and, without missing a beat, will throw her arms around him to give him a hug.

We had a quiet family celebration for her birthday this year.  I'm beginning to realize the difficulty of having a summer birthday - everybody is out of town when it comes time to celebrate. But the best part of being the youngest in the family of 5 is you always have an instant party ready to go!

Avonlea, we are immensely thankful for all the love and joy that you bring to our family!
Happy birthday, sweet girl!

21 July 2015


This is the picture we took before Bennett went in to sinus surgery on 7/9.  I never posted it because we ended up having to go home with no surgery when insurance denied the surgery and the hospital explained during pre-op prep they hadn't called us to tell us we had no insurance coverage.  Today, we have reason to smile again!! 


Baylor University/Academic Health Plans sent an email to Brian and me this morning stating that they have worked with insurance to APPROVE Bennett for surgery!!!!  We are SO grateful!!

So much hard work has been done behind the scenes on our behalf over the last week to get this done!  Judith from Academic Health Plans is someone I have never met but who is credited as being the one who made this happen.  Words I have heard used by others to describe her include "tenacious, like a dog with a bone."  "If anybody can do this, Judith can," I heard along this journey.  Apparently, it's true!  Thank you Judith of Academic Health Plans!!

Also, I want to thank Betty at Baylor's Student Health Insurance office (who regularly fielded my calls and been so empathetic to our situation) and my appreciation goes to Martha Lou from Baylor who, in her Southern accent said to me when things weren't looking quite as bright on Friday: "Our prayers are for Bennett and for hearts to be softened and for your mama heart to be reassured."  That meant alot.  It's been evident in my interactions throughout this process and more that Baylor cares about it's students and it's community.  

Another person who deserves lots of hugs is our dear friend Courtney who, even as we were still in the surgical bay on July 9th learning of insurance's denial and the hospital's failure to tell us this in advance, was sending an email with a link to our blog to the graduate school on our behalf asking for help from the school.  Her advocacy along the way has been SO appreciated!!  She was knocking on doors at Baylor even before I knew there was a door there to knock on!

So, where do we go from here??

As soon as I received word this morning from Baylor that insurance had approved coverage for the surgery, I called Bennett's ENT office asking to place him on the OR schedule.  I have been in almost daily contact with the clinic staff along the way asking them to hold our place in case something could be done at the last minute.  I now know many of the staff by first name and they most certainly know me. :)

Looks like that if the hospital can confirm insurance coverage and if the doctor agrees to do the surgery, we should be able to get Bennett surgery next Wednesday, July 29th!

Bennett's new pre-op appointment is schedule for Monday.  We have to go through another pre-op appointment since insurance policies dictate that Pre-Op appointments must be done within 30 days of surgery and it will have been too long since our last one.  At this point, we are preparing for surgery and a hospital stay on Wednesday/Thursday of next week.

My experience with these kinds of things tells me this isn't over until it's over.  So, I won't be surprised if we find there is another hurdle to jump before we get to the finish line.  But, for now, it looks like things are lining up nicely.

We are SO thankful for today's approval!!  And we are immensely grateful for the community of people who have helped us overcome the barriers to keeping Bennett well.


16 July 2015

Just keep swimming...just keep swimming...

Bennett's been sucking down ibuprofen over here like it's kool-aid.  It's the only thing we can do while we wait to hear from insurance on our request for appeal of denial of his sinus surgery.

He is uncomfortable but keeps moving through it.  "My head is hurting mom.  Can I have some medicine?" is a pretty common request from him right now. Sometimes it is followed by the question, "I thought they were going to fix my head" but often it's pacified with 10ml of ibruprofen taken as soon as possible. 

Late in the day Tuesday, I was contacted by Bennett's CF doctor, a doctor who very closely monitors Bennett's care but who is not directly involved in this situation since Bennett's sinus issues are being cared for by an ENT at a different healthcare facility closer to our home.  Bennett's doctor had wanted to check in and see how she might be able to help.

I might not have otherwise told Bennett's CF doctor for a while what happened with the insurance situation had she not have called on Thursday afternoon (the afternoon of the surgery) to give me the results of a chest x-ray he had received a few days earlier.  

Her call that Thursday afternoon had come at just the very moment I had needed it.  We had just returned home from the hospital and we were just sick over what had transpired.  I told her about how insurance had denied coverage of his surgery and how that it wasn't going to be something we were going to be able to do for a while.  She likely heard my voice crack as I spoke. 

"Ok, well, until it gets worked out, here is something you can do..." she said in a reassuring voice. She went on to suggest increasing Bennett's inhaled Pulmozyme medication to twice daily in hopes he could thin the mucus in his sinuses until we can get the surgery.

My heart has been so incredibly touched by the little ways people have reached out to help. It meant so much to hear Baylor and Academic Health Plans immediately went to work to see about getting him approved for surgery. The love and support Brian and I have received from friends, family and strangers since this happened has been life-giving. Even as I sat for two hours at the doctors office on Monday waiting for the appropriate paperwork, I was encouraged to know a whole community was doing so on social media alongside me.

Another glimmer of love and support came on Tuesday when Bennett's CF doctor reached out to me a few days later asking me how things were going with the approval and how she might be able to help.

I jumped at the opportunity to have her help. I explained we could use a letter from her stating her opinion about the surgery and why it was vital Bennett received surgical care.  

At 12:30AM, as I was just starting to fall asleep, I received an email from her with a 3-page written letter, ready to be placed on letter head and sent to the correct places.  What a gift that was! 

I had expected a medical necessity letter from the coordinating doctor, the ENT, in order to appeal the surgery.  But what I hadn't expected was that another doctor not directly connected to this situation would have taken the time and energy to reach out and contact me to offer her help.

The appropriate parties received her letter first thing yesterday morning. But for now, all we can do is wait. 

As Dora in "Finding Nemo" says, "just keep swimming, just keep swimming." And that's what we are doing as of now. 

The boy's first pet, "Iggy" the fish.  (Iggy for Icthus, the Greek word for Fish.)
Just keep waiting...Just keep waiting...

13 July 2015

Appeal Paperwork Sent; Now We Wait

My day today began waiting.  And tonight, it ends with waiting...

As quickly as we learned that Bennett's sinus surgery would not be covered by insurance on Thursday was as quickly as I was on the phone to fix it.  

When we ran out of time to fix it, we had no choice but to go home without surgery.  I later learned that in order to submit an appeal with the insurance company, the appeal should be in writing and should include a letter of medical necessity.  

First thing on Friday morning, I called the doctor's office asking for a written letter of necessity. 
I called again at lunch time on Friday.  And then I called again at 2:30pm.  I also send 3 separate electronic messages requesting a letter or at least a phone call.  However, after my last phone call, I learned that, despite my requests, the clinic wasn't going to make available what I needed to make for a written appeal until the following week.   

So, this morning, after sending my children out with a babysitter to go to their bi-annual dentist appointments without me (she would simply have to have the dentist call me if there are any cavities), I drove down 30 minutes to the ENT clinic.  There, I intended to wait.

I wasn't willing to go on more day without being able to appeal the exemption keeping Bennett from relief and the ability to breathe again.

Early into my morning at the clinic, I was recognized.  A very sweet lady at the front desk listened to me tell her desk mate only a few minutes of Thursday's ordeal before she said, "oh I know you..." She had I had spoken on Friday afternoon.  She knew the fiasco that had taken place and my frustration of being put off longer than was necessary.

In a matter of minutes I had spoken with the nurse...and then the nurse again but with the a Resident. Both offered for me to go get coffee or go home and come back.  But I made it clear that the only thing on my agenda today was to get the necessary paperwork to submit an appeal on behalf of my son.

After 2 hours and a few episodes of the Nick Jr TV show "Blaze," I was handed the paperwork I needed.
The medical records I still lacked?  That would require a trip downstairs to the Business Office a drive to the main hospital's Medical Records office.  

It didn't take long to drive over.  Tucked into a small room with a dozen other people, I waited only briefly for Bennett's medical records.  I had planned to stay for a while (the morning had taken so long, surely this would too??).  But it took just a moment for them to print and for me to be on my way! 

Once I had both Bennett's medical records and a letter of medical necessity in home, I had planned to head home.  But I wanted to get this paperwork into the right hands so before I even pulled out of the hospital parking lot, I was emailing and faxing it to the right places.

While in my car, I was able to turn the paperwork in to digital copies use the app CamScanner in my iPhone.  Having the paperwork digitally allowed me to send the paperwork via email to Baylor and Academic Health Plans immediately.  Within minutes, I had heard back that they had received my appeal and were forwarding it on to the insurance company.

The other app I used, called FaxFile, allowed me to send via fax an official written appeal to the insurance company.  The appeal process allows for two appeals, a first and a second level appeal.  

So, where do we go from here?  We just wait.  The official appeal with the insurance company may take up to 30 days.  I'm very hopeful to hear something positive from Baylor/Academic Health Plans but I honestly don't know.  

Bennett asked for medicine for his headaches again tonight.  It's hard to see him continue to suffer knowing that we were just minutes from getting him relief via surgery a few days ago.  

Bennett said to me as I gave him Tylenol Thursday night after we came home from the hospital without surgery, "I thought they were supposed to fix my headaches.  I don't think that's very fair that they didn't do that." 

To which I said, "I know, buddy, Daddy and I didn't think that was very fair either.  We're working on changing that."

Now we wait to see if someone agrees with us.

10 July 2015

It's not about whose fault this is. It's about who can fix it.

I have spent the better of the last 36 hours since our discharge on the phone with...

Blue Cross Blue Shield of Texas
Texas Insurance Commissioner's Office
Baylor University's Health Insurance Department
Academic Health Plans
The Cystic Fibrosis Foundation Legal Hotline
The Cystic Fibrosis Foundation Patient Assistance Resource Center (PARC)
The American College Health Association (ACHA)
Scott and White Hospital

...most of them many times.  And what I have learned in the last day has been eye-opening to say the least.

The questions I have asked in about 100 different ways is:

How could this happen...and HOW DO I FIX IT?!

How can a health plan get away with simply not covering a part of the body?
Doesn't the Affordable Care Act prevent this from happening?
Does the Affordable Care Act mandate this not happen?
What are the Essential Health Benefits under the Affordable Care Act?
What does Chronic Disease Care mean as an Essential Health Benefit under the Affordable Care Act?
Is there an appeal process?
What is the appeal process?
Who do I appeal to?
Who do I appeal to after that?
What does my doctor need to do?
How can I get the care Bennett needs?

Hours and hours on the phone have provided me some really helpful conversations today.

The Texas Insurance Commissioner's Office complaint line was incredibly helpful.  I could listen to them talk all day.  They were so knowledgeable and helpful.  One of the things I learned is that I have the option of appealing the insurance company in writing on two levels as well as the option of filing an official complaint with the Texas Insurance Commissioner's Office.  (I surely wish my doctor would have told me I had this option this yesterday before we went home.  An immediate written appeal would have been appropriate.)

I spoke with Jim, a lawyer at The Cystic Fibrosis Foundation Legal Hotline, who also did a fantastic job walking me through how things like this work and explaining to me what power I have as a caregiver in this situation with regard to the law.

And somehow I found myself talking to a past president of The American College Health Association (ACHA) who also was a wealth of information.  She helped me understand how student health plans have changed over the years due to the Affordable Care Act, the current laws that exist and what options I have going forward.

But the best call of the day came from Baylor University and Academic Health Plans.  

Baylor University's student health plan is a non-federal self-funded health plan.  (This is not something most consumers know or even care about. I certainly didn't know. But it's something important I stumbled upon in my research.)  Baylor University works with Academic Health Plans to oversee this student health insurance.  Blue Cross Blue Shield of Texas is contracted to be the insurance carrier of this plan.

Mid-day today, Brian received a call from both Baylor and Academic Health Plans asking for us to submit a letter of appeal to them so that they could help us get a provision for an exemption to allow Bennett to have his surgery.  I didn't have the privilege to get to talk to them when they asked for the information.  But as soon as I heard this information, I went immediately to writing and submitting an appeal letter.

I was almost shaking when I wrote.  How do I pencil the right words to help convince someone to make the decision to help my child??  What if I fail to say it perfectly?  Will my words make a difference?

Unfortunately, I found myself very frustrated at my physician's office today who, despite my repeated calls, chose not to furnish me with a written letter of appeal by the end of the business day, despite the fact that I contacted them via phone/electronic messaging six times throughout the day stressing a letter of medical necessity was needed and time sensitive.  

You would think that after yesterday's failure by the hospital staff to inform us until our child was being admitted for surgery that insurance had denied the surgery, they would taken the time to help us make an appropriate appeal.  But alas, they did not.

So, I have cleared my schedule to be will be there in person at the front desk bright and early on Monday morning to make sure I get it then.

In situations like these, it's easy to want to find someone to blame.  It's easy to ask, "whose fault is this?"  But I understand that things are more complicated than that.  I don't think there is any one person to blame.  

Besides, I don't really care anyway.

All I care about is getting Bennett the medical treatment he needs.

Right. Now.

09 July 2015

Surgery Cancelled.

Can I just say how sad I am?  Sad... Disappointed... Angry.

All the work and effort that went in to today...for it to be cancelled because of 27 words:

"Exceptions include: Sinus or other nasal surgery, including correction of a deviated septum by submucous resection and/or other surgical correction, except for a covered injury."

Apparently, our health insurance, which is a student health plan from Baylor University, excludes any sinus surgery for almost any reason, even if medically necessary...including the life-threatening disease, Cystic Fibrosis.

But, as that in itself isn't bad news enough, nobody bothered to tell us this until we were admitted to the hospital.

Bennett, in his thin hospital gown, waited patiently to get his sleepy medication.  He had been waiting all day to eat and drink.  He was ready to get this show on the road.

Doctors and nurses came in and out of the day surgery room asking questions, preparing for surgery. But I stayed on the phone.  We had to get this resolved.

How could this be?  Medically necessary sinus surgery is just excluded?!

Apparently so.

The OR stood ready.  Versed was ordered.  But then cancelled.  The doctor, dressed in her scrubs, came in on her cellphone.  We could hear the elevator music in the background as she waited for Blue Cross Blue Shield of Texas to pick up.  She had hoped to tell them that the evidence was clear: Bennett needs this surgery.

But a bit later, I saw her through the window of our room shaking her head as she opened the door. It was over.  "I'm sorry.  I tried."  There was no recourse.  We were going home.  Insurance is not going to pay.  Sinus surgery is simply excluded.

Realizing we would be stuck with a $24,000 bill if we went forward (and maybe more if something went wrong during surgery), we decided we had no other choice but to leave.  We will have to figure this out before we would be able to come back.

I can't even explain how much my heart hurt to have to pick up our stuff and leave. We've been watching our little guy suffer with headaches for a while now.  We've seen the CT scan of his sinuses filled with thick yucky mucus.  We were all so happy he was going to get relief.  But that wasn't an option any longer.

It's hard to believe that during a time when the Affordable Care Act is mandating so much, somehow student health plans are able to get away with excluding whole organ systems from being covered by insurance.  And what's sad is that families like mine are not even aware of the impact of these exclusions until they they need them...or, in our particular situation, show up for them.

This is life with a chronic disease.  It's often not the big things that are so painful, but the little things experienced along the way.

I will never allow this to happen again.  I will pay closer attention to the exclusions in our health insurance policies.  And I won't bother leaving the house until I have confirmed insurance coverage.  But these sorts of things are often learned trial by fire.  It's hard to know what you don't know, until you realize you don't know it.

Our insurance plan will change shortly and we will then reevaluate our options.  We hope Bennett will get the surgery in the near future.

But for now, we will just go home and continue on as normal.

...after mama has a good hard cry.

This isn't the way it's supposed to be.

08 July 2015

Preparing for Surgery Tomorrow

The calls started early this morning.  The hospital nurses called to confirm tomorrow's surgery times...and his current medication list...and his health history...and his NPO times (nothing by mouth after 9AM).  It's like we're all planning for a party.  Everybody in their places. Every detail to get right.

Bennett's sinus surgery will begin at 12:15pm tomorrow and should last a few hours.  We don't expect any surprises.  We will be admitted to Scott and White Children's Hospital after surgery for a "23 hour stay" to watch to make sure he's ok.  We will be on what they call "reverse isolation."

Today, I started pulling things together for our hospital stay.  A favorite blanket.  A bag of toys. A new pair of pajamas (we needed them anyway).  Thankfully, since we did this only a few months ago, I still have stored away a few little treats for Oliver and Bennett to help them build good memories of this surgery/hospitalization.  We have been talking with both boys about what to expect with his procedure over the last week.  But Bennett and I spent some extra time talking tonight.

To help Bennett understand, I drew a picture of him and showed him where his sinuses are.  I let him color in the yucky mucus that currently fills his sinuses and is the cause of his headaches.

To help him understand what the doctor would do, I drew another picture of him, this one with him asleep.  I filled the mucus with pencil and allowed him to be the "doctor" and use his "tool" (the pencil eraser) to take out all the "yucky mucus."

Bennett really liked being the doctor and helping his patient feel better.  He liked doing it again and again for others to see.

A bit later, I caught Bennett with his own paper recreating my pictures for himself.  Bennett's play therapist reminded me today how playing out the procedure/gaining mastery of the situation through play allows children to understand and feel safer during the actual event.

As a parent, it's often hard to know where the gaps are in his understanding of what's happening to him.  But the play therapist reminded me that one thing I can do to help with this is to tell both boys periodically: "I will answer any questions you may have and I will tell you anything you want to know that I know."  This gives children permission to wonder and ask as things come up.

Over the last two weeks, Bennett has been bringing up the topic of death again.  His fears may be exacerbated by his upcoming surgery.

He said to me yesterday, out of the blue, "Mom, what would you do if I died?"  Not realizing what he was asking, I flippantly said, "I'd be sad - we all would be."

But, then, recognizing his questions may be more serious, I slowed down and paid closer attention to his questions and my responses.

I reassured him, "if you died, we would be sad.  But we would be ok.  We would always love you and we would always know you love us.  And you know what will happen if I die or Dad dies or Avonlea or Oliver dies?"  He said, "what?"  I said, "we would always know we love each other, even if we weren't here anymore.  We will miss each other.  But we will be ok."

Bennett went on, "You know that if I go to heaven, I don't have to be scared...because God is with me."  I reassured him this was true: he is never alone, in life or in death.

I'd like to think Bennett isn't dealing with life and death issues before he can even read...but that's how this disease works.  When you're fighting each day just to keep your breath, these issues are never far from your mind.

On our mind right now, though, are prayers for safe surgery, good recovery and the ability to breathe even easier (and with no headaches) after tomorrow!

01 July 2015

I got kicked off my hospitals Patient Advisory Council... for being a patient advocate

Picture taken from Twitter at @FlipTheClinic.

Almost as quickly as I answered the phone, I heard the words:

"We are going to have to remove you as Co-Chair of the Patient Advisory Council."

I had a feeling those words were coming.  Several days before I had been contacted by my CF Clinic's Hospital Administrator requesting a conference call regarding my recent blog post:, a blog post I had written to remind myself I am not powerless, even if sometimes I feel that way.

I wasn't surprised to hear her words.  But I was disappointed...because it was confirmation of what I had come to learn: my hospital does not yet seem ready to really listen to its patients.

This was the first time ever that my hospital administrator and CF clinicians had initiated a phone call to me to talk about my personal feelings regarding improving our CF Clinic/Hospital.  I had many times solicited their thoughts.  But never had they solicited mine.  Until now.  Until the decision was made to ask me to leave.

I accepted the words, knowing I had no recourse.  So, I asked questions to better understand. 

"Can you tell me what exactly I did wrong?"

The hospital administrator reassured me that nothing I had written was an issue.  Neither had I violated any rules.  I wasn't removed from the Patient Advisory Council (PAC) because I wasn't committed.  Quite the opposite is true.

It was explained to me: I was removed because the legal team and hospital administrative team at my hospital had decided I was "not accepting of the PAC process."

The hospital administrator read back to me the words in my blog post I had written to describe my feelings, words such as "frustrated", "disappointed", "blamed", "neglected", "powerless", "barrier after barrier."  

I heard her tick each word off as though they were a list of transgressions, something I had done wrong.  What I wanted more than anything in that moment was for her to see behind each of those words my transparency and vulnerability.  What I wanted was for her to reflect on them, recognizing that how many other of our patients might be feeling similarly.  Instead of using those words as reasons to remove me, I wanted her to ask, "how can we work together to address these feelings?"

Instead, she went on to explain
 that the reason I was being removed was because work with the Patient Advisory Council "needs to be on a constructive level, not a frustrated/negative level."  

I listened intently to her words.  Where exactly were we missing each other?  Everything I shared publicly, I had shared privately.  My words should have come as no surprise to anyone involved.  

I began to wonder...

Who exactly determines what is "constructive" work?  The patients or the clinicians?  What if one party disagrees?  Is it, for example, considered working on a "frustrated/negative level" if the patient is the one who feels the work is not "constructive"?  Certainly seems like it in this case.  

In regards to the exact "PAC process" that I was not following, I still don't know.  But I'm left to believe that I basically wouldn't rubber stamp what the hospital wanted to do.  

I am of the opinion that the patient voice and patient experience is much more valuable than to just nod and smile.  Patients want to do more than approve work that has already been done.  We want to partner together to change and improve care.

And, can I just stop for a second and reflect on the hospital administrator's comment that a patient's work cannot be at a "frustrated level"?  How in the world can one ask a caregiver of child with a life-threatening progressive disease chained to a broken health care system to not be frustrated?  It's intensely frustrating.  This disease is frustrating.  What feels negative to me is that my son's health is slowly deteriorating and I am desperate to save him.  I don't have time to wait.  I don't get to quit.  I can't go home at the end of the day and put this all away.  This is our life.

My blog began the moment Bennett was born.  It was supposed to be just a vanilla blog for the grandparents and a few friends to watch our second-born son growing up.  But when Bennett was diagnosed with Cystic Fibrosis, it became a place to share about his condition and our efforts to find a cure for his disease.  As I began to learn things along the way, I began using the blog to share ideas and insights for other CF families.  If I'd found a way to hack the system, I wanted to share it with others, just as I want to learn from others. 

It's interesting that such an innocent blog for such an awful condition would upset a hospital legal team and the hospital administrators prompting them to remove one of their most engaged patients from a committee created to listen to the patient voice.

But what this situation has done only better illustrates my original point: patients must be their own advocates.

The internet has changed everything for patients.  Patients talk to each other - in real life and through social media.  CF patients, more than anyone, depend on the internet.  CF patients cannot be together in the same room so we rely on communication via Facebook.  CF patients are often given tests and must wait for days for results so we rely on Google searches to explain the unknown.  CF patients have a tremendous amount of care they must manage, the internet helps inform decisions and understand diagnoses.

(Listen to Suzannah Fox describe how the internet has changed the world for all patients - my very favorite story begins at 6:30 minutes in:)

I had one goal in mind with regard to our CF Clinic Patient Advisory Council: to help set the stage of clinicians and patients to work in genuine collaboration.  

I want my hospital to be one that doesn't remove a patient when they ask for more but who values their experience and insight.   

Isn't it interesting that I felt so unheard on my Patient Advisory Council until my hospital/clinicians got wind of my blog?  It's ironic that my hospital finds patients where they are but cannot work with them to to be there too.

I'm disappointed not to be able to be a part of the PAC anymore.  But I'm not surprised.  Change is scary - and so are patients empowered so that they don't need permission.  

I don't take my removal from the PAC personally.  I still really like my CF Care team and the hospital administrator who informed me of my removal.  The people in these big systems are individuals just like the patients they care for.  Patients are more than their diagnoses and clinicians/administrators are more than their jobs.

My removal isn't personal and neither are these barriers put before us patients.  But it's sad for patients... because patients/families need better.

These words are how I ended the blog post that originally got me kicked off the PAC in the first place.  But they seem even more relevant now:

"What I've realized is the limitations I put on myself are imaginary.  When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.  And that is absolutely not true.  The truth is: the power is at the bottom. 

I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.  We want them to be a part of what we are doing.  And I believe they will be.  But those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.

We are the experts in our own care.  We just need to recognize the resources we have at our fingertips and put them to use.  We need to wholeheartedly embrace the idea that we, as patients, don't need permission to make our lives better.   The permission is already there."