Thursday, August 27, 2015

Signs of love

A while back, I wrote about Bennett's sinus surgery nurse and how she had surprised us by having already known about us because my friend Kayla had shared our story weeks before.  Kayla is a champion for Bennett so I wanted to share more about how her efforts this year impacted us.

If you like HGTV's Fixer Upper show, then you'll love the artwork that Kayla creates.  She is a wife/mom of two, a talented crafter and owner of Linen and Lumber.  Last year, Kayla auctioned off two beautiful items in order to raise money for a cure for Bennett.  This year, she raffled off two more:

These pieces are *beautiful* and we knew they could be best appreciated in person.  So, we asked Emily, owner of Waco's hottest vintage and antique store Junque in the Trunk, if she would be willing to allow us to place the signs in her store for a few days.

Emily, who has such a big heart for others, did not hesitate at all.  She was more than willing to help us do anything to raise money for a cure for Bennett. The signs stayed in the store for several weeks.

However, tragically, during the time period when Kayla's signs were being displayed at Junque in the Trunk, there was a sudden death of one of Emily's wholesalers.

A local man who had been hand-making some of the store's most popular light fixtures had suddenly died.  Emily was heartbroken, both to lose Randy but also for his wife who was now a widow.

In an effort to help this Randy's widow, whom she cared about (I told you Emily has a big heart), Emily decided to raffle off the man's last light fixture left in the store and give that money to the widow.  The light fixture raised several hundred dollars.

But when Emily offered the money to the woman who had lost her husband, the woman, who had, at this point, heard Bennett's story, asked Emily if she would turn around and donate it to Bennett's Brigade.

I was a puddle of tears when I heard this...this sweet woman having just loss of the love her life had turned around and given that money to help give our little guy be able to live. 

It wasn't until I reached out on social media to thank this woman, whose name is Tammy, and asked if I could share her story on the blog that I realized I knew her.  Tammy was once a nurse at Bennett's pediatrician's office.  

When Bennett was a baby, we were in the Pediatrician's office ALL THE TIME.  Tammy was one of the sweet nurses who would regularly say hello and smile in the hallways, offer to get the kids stickers and suckers after their appointments and just make the experience of taking my special needs child to the doctor a little less painful.  

But realizing I knew her made Randy's death even more difficult.  Tammy is so kind and caring.  Losing your husband is so unfair.

At a loss for words, I told Tammy I wished very much that I could take away her pain.  Tammy's reply to me was, "I wish you could bring him back also, but I do know that God had bigger and better plans for him and I."  

Tammy explained why she donated to the CF Foundation in memory of Randy, "[Bennett's] story touched my heart and I know it would have my husband's also."

I want to thank Tammy again for her donation and for honoring her husband in this way.  We recognize what a gift this is and will forever remember Randy.

Kayla's raffle ended up bringing in about $1000.  The winner of this sign is Haley Fuller.

The winner of the easel is Christi Cane.   We are thankful to EVERYONE who participated in this raffle for their donation to the Cystic Fibrosis Foundation in honor of Bennett.  

Kayla explained to me personally several times this year how she much she just wants to use her talents to bless others and how her greatest hope is that God would work through them.  Looking back over the last few months, I cannot deny that God has done just that, Kayla.  Thank you for making us the beneficiary of your hard work and care.

Although we have not yet found a cure for Bennett, we certainly are not short on blessings.

With greatest sincerity, THANK YOU!!

Monday, August 17, 2015

Post-Op Appt Bennett

Bennett has recovered very nicely from the sinus surgery he had a few weeks ago.  Last week, I took him back to the ENT for a post-op follow-up.

Even after the surgery, Bennett continued to have less-painful but still persistent headaches.  The ENT decided to prevent any further infection by prescribing him an antibiotic. He hasn't complained of headaches since.  It feels SO good to know his sinuses are clear for now.  We have noticed his appetite has increased and he's actually been more interested in food.  We imagine it's because he can smell and taste again.

What is really wonderful is the other night, while playing in a friend's pool, I asked Bennett to put his head underwater when he swam to me.  He tried it but complained he was getting water up his nose. I showed him how to blow water out of his nose.  He struggled to feel confident he could do it.  I reassured him he could.  We took some deep practice breaths in and out of his nose - and then he tried blowing water out of his nose while swimming.  He was thrilled when he realized he actually could do it - his nose wasn't stopped up anymore!  It was a pretty neat moment to watch his face while knowing what he had experience before surgery versus afterward.  Sweet little guy was so proud of himself for being able to do something so big and important - being brave with putting his head underwater and pushing air out of his nose! :)

However, one sad moment for us with regard to surgery is the addition to yet another therapy to Bennett's already overwhelming treatment schedule.  We have now had to start sinus rinses.

A "sinus rinse" is the use of a specially-designed squeeze bottle to push salt water up one nostril causing it to naturally run out the other to loosen up mucus and wash out bacteria.   If it sounds freaky, believe me, it is.  But, what I found from doing it myself is that it's fairly natural once you get used to it.

Try telling that to a 5 year old.

I begged Brian to do it with me first.  I felt like that, in order to better understand the feelings Bennett would have, we, as his parents, needed to bravely try it first.  (This took Brian a bit to get on board.) It felt weird and a little uncomfortable but ended up feeling like the feeling after you've had a good cry and blown your nose or after you've done flips in the swimming pool all day - where your nose just feels cleaned out.  It kinda feels cleansing.

But again, try telling that to a 5 year old.

We told Bennett what we had done and what we needed him to try too.  Bennett knew he couldn't resist for too long.  So, he hesitantly allowed Brian to give him a sinus rinse on one nostril.  Despite that it is fairly harmless, his reaction was that of distraught.  So, we knew we weren't going to get him to do the other nostril on the first night.

Thankfully, his bravery came out after a night's rest.  Tonight, he agreed to do it in both nostrils.  We are working up to both nostrils in the morning and the night.  (That's a lot of gummy candy being given out in our house - often his reward for things he hates.)

Nonetheless, through his tears, right before he had to try the sinus rinses for the first time, Bennett said in resignation: "This is why I don't like having Cystic Fibrosis."

We get it.  Not only is it mentally taxing to have to add one more thing to your list of things you have to beg your child to do every morning and every evening, sinus rises adds to our daily work, as well, as his caregivers.

The sinus rinse bottle has to be washed after every use and the distilled water has to be mixed with saline packets to prepare for every use.

...add that to the daily washing and sterilizing of his nebulizer treatments and the twice daily making of his feeding bag and the multiple times daily giving out of pills and the twice daily placing of Bennett on the Vest for 20 minute increments and monthly reordering of meds and it's easy to see why one.more.therapy can be overwhelming.

Raising Bennett doesn't just include giving out rewards for chores like brush your teeth, pick up your toys, make your bed but also do your Vest, take your meds and do your sinus rinses.  It's wearying just to do the first three, much less the second three on top of that.

We are working to accept this new treatment regimen change.  As hard as it is now, we know it only gets worse - more treatments are to come, more meds to be given, more time on the Vest to be spent. But Brian and I often quietly look at each other in these moments and share with each other Bennett's sentiment:

This is why we don't like Cystic Fibrosis.

Friday, August 14, 2015

First Day of School 2015

Today is the day!  School is back in session for our family!

First Year in 2nd Grade

This year, Bennett and Avonlea are continuing at their school but Oliver has moved to a school that focuses on the Montessori method of education (hence the missing uniform).   We think he will do better in a slower-paced, more flexible classroom that allows for more self-directed learning. Oliver is sad to leave his school and friends but is looking forward to a new way of learning. Apparently, they are going to be studying about galaxies this year so, naturally, Oliver is stoked!

First Day in Kindergarten

It was a little hard for Bennett to have to go to his school without Oliver this year but it helped that most of his best friends from last year are back this year.  It's hard to believe our baby Bennett is in kindergarten.  He has his first loose tooth and is on the cusp of reading.  I feel like in some many ways life with Bennett was very slow those first few years when we had so many speedbumps to get through but now life with Bennett is going  at a super fast speed.  

First Day in the 2 Year Old Class

This one got me.  I cried when I dropped her off at school today.  She was so excited about school.  She requested to walk herself in while holding her own lunch box (which she referred to as he "backpack").  It was so very sweet.  She was upset when I left her, which made it hard.  But her teacher has sent me pictures throughout the morning, which has been great. I know she will enjoy playing and learning new things at school a few days a week.

Here's to a great school year,

Tuesday, August 4, 2015

Coming Home and an Update on Bennett

It's hard to believe it's taken me until Tuesday to post about our Thursday's homecoming from the hospital and subsequent recovery!  The first day or two was just catching up on sleep and connecting with the little people who had missed me when I was gone.  But the other few days have been trying to slow down enough to get a chance to post. Alas, here is an update on the rest of our hospitalization and how things have been since we got home.

Although Bennett was able to comfortably sleep at the hospital Wednesday night, I was able to get only 3 hours of sleep that night.  

It's SO hard sleeping in the hospital.  The hallway lights beam brightly through the door window at all hours of the night.  The machines make beeping noises and regularly call out for attention.  Vital signs have to be checked.  Nurses enter and exit the room as they please, inevitably making noises when they do.  And that plastic lined couch that makes down in to a smaller-than-twin-sized bed could be no less comfortable.  On top of that, I struggled to sleep because I was anxious that Bennett would wake up suddenly afraid of where he was...and because I knew that almost as early as the sunset, the nurses would be changing shifts and doctors and residents would be making their rounds.

Sure enough, around 6am, we had people in our room saying good morning and checking on Bennett's condition.  Thankfully, Bennett slept well at the hospital and woke up the next morning in a great mood.  I was actually quietly whispering to the ENT resident at the edge of his bed when Bennett popped up awake from his sleep, smiled and said, "hello!"  It was at that point that I knew he was going to be just fine.

Recovery in the hospital went well.  The thing that bothered Bennett the most was having an IV in his foot and an oximeter on his toe.  However, he did a great job tolerating it.

Of course, we still had to do treatments while in the hospital.  He never gets a break from breathing treatments.

We got word that we were going to get discharged later that morning but it took a while to get our papers. This is because the entire Baylor-Scott and White hospital systemwide EPIC electronic charting server went out in the middle of the night and couldn't seem to come back online.  Not only was our hospital affected but so were all of Baylor-Scott and White hospitals in all of Dallas and the surrounding areas.

It was like being in the 1980's again. Nobody had access to the electronic medical records and no ability to chart electronically.  It was all about that paper and pen at this point.  Since this had never happened to the hospital before, it was funny to see how much clinicians rely on technology in the health care system these days.  Everyone was very professional and calm about it.  But it was obvious that knocked everybody for a loop.

Unable to use the electronic system, our discharge papers had to be handwritten by our doctor.  But then, unable to be sent electronically to another part of the hospital, the handwritten discharge papers actually got stuck in the tube on their way back down.  So, that took some time to get them out.

Thankfully, Bennett was very patient while we waited to be discharged.  He just played with his Star War toys.

Bennett fell asleep on the way home from the hospital.  I was super sleepy on the way home, as well.  So, as soon as I came home, I headed for a few hour-long nap.  Thanks to Brian and our sweet babysitter Peyton, who donated her time to me, for taking care of the kids once we were home.

So, how is Bennett doing now?  He is doing really well.  Recovery from sinus surgery has been great.

The first 24-48 hours brought some bloody noses.  In fact, a bloody nose is our biggest risk for the next two weeks.  But, for the most part, it hasn't been a problem.  Bennett has complained of very little pain since we left the hospital.  

Bennett said he still has headaches but says they are milder than the ones before.  I will ask the doctor about this if they have not resolved in the next two weeks.  Bennett doesn't report breathing better but I'm not sure if it's because he still has dried blood and inflammation in his nose or if he just can't tell a difference.

The cultures from Bennett's sinus surgery have come back.  Fortunately, Bennett's cultures found he had antibiotic-sensitive staphylococcus aureus (MSSA) in his sinuses, the same thing he has in his lungs - a bacteria that has likely colonized in his system at this point.  Bennett's ENT doc and CF doc have both agreed not to treat this infection at this time.  "Staph" as it is often called is common in CF lungs and sinus cavities.  Although the bacteria could be treated, the doctors want to very careful not to overuse antibiotics that Bennett will likely need later.  Antibiotics are critical to keeping Bennett well so overuse, even if necessary, will cause the bacteria to eventually become antibiotic-resistant.  Antibiotic-resistant infections, such as MRSA, can be very harmful.  So, for now, we are thankful for this milder bacteria and pray it is the only one he colonizes any time soon.

We will go for a post-op appointment in a few weeks but, overall, we had the best outcome we could hope for - a necessary surgery completed successfully and test results that show he has no serious infections yet.

CF is a time bomb.  It's only a matter of time before we are dealing with more serious things.  But every moment that we are dealing with less-serious things is a gift!  

Brian and I are so thankful that Bennett has now had the surgery, is no longer in pain and no longer has thick mucus clogging his sinus cavities.  We are ever aware that our blessings are plentiful and we are thanking God for every one!

Wednesday, July 29, 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

Tuesday, July 28, 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!!

Sunday, July 26, 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!

Tuesday, July 21, 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.


Thursday, July 16, 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...