Tuesday, October 6, 2015

Being an ePatient Scholar at the 2015 MedX Conference

Last week, I had the opportunity to travel to Palo Alto, California (sans husband and kiddos) to attend MedX, a patient-centered medical conference intersecting medicine and emerging technologies.  In addition to my receiving a paid scholarship as an ePatient Scholar, I was asked to be a patient voice as a part of a plenary panel on the future of healthcare journalism and big data.

It was a great honor to sit among such smart people. Our panel was moderated by Dr. Jordan Schlain, founder of HealthLoop.  To my left sat Dr. David C. Miller, program director of MUSIC (Michigan Urological Surgery Improvement Collaborative).  To my right sat Dr. Bob WachterProfessor and Chair, Department of Medicine at UCSF.  Featured on the panel were Marshall Allen and Olga Pierce, reporters of the news organization ProPublica's article called "Surgeon Scorecard."  (Watch this Today show segment to briefly learn more about the Surgeon Scorecard.)

Our panel discussion centered around an article journalists Marshall and Olga recently published titled "Surgeon Scorecard" which used Medicaid data to determine which surgeons around the country had the highest complication rate.  The article hit controversy as many in the healthcare community, doctors especially, have felt like the data inaccurately leads patients and the public to believe this list determines for them who is a "good" or "bad" doctor.

Our panel's discussion of this issue included a conversation about measurement and transparency in healthcare.  Should and how could healthcare providers measure their own work and patient outcomes?  What data, if any, should patients have access to to make decisions of their own?

I shared how we, as patients, need both.  We, as patients, need our health providers to know how they are doing, in comparison to others in their line of work.  And, we, as patients, need to know how our doctors are are doing so we can make fully informed decisions about our care.

Our panel discussion was just a taste of the kind of discussions currently happening within healthcare today. (Once the video of our panel discussion is posted online, I'll link here.)

My experience at MedX was amazing. What struck me the most about my experience at MedX is how valuable the patient voice was to the discussions that were and are being had.  Although I do not have a MD, I felt very much like my voice and experience had an important place in our work together - something I do not regularly feel as a parent of a child with a chronic disease in the healthcare system today.

At MedX, patients/families are treated, not as people who passively receive care, but as people who are well-informed active members of their healthcare team.  Patients are are respected and listened to - they are appreciated for offering insights and stories from which others can benefit. At MedX, it's clear to everyone: doctors learn from patients and patients learn from the doctors.  We're in this together.

I watched as MedX, a 3-day annual conference, gathered together some of the most forward thinking healthcare movers and shakers in the US and overseas (Scotland, Sweden, UK, etc) to discuss a variety of healthcare-related topics such as patient safety, accessibility to data, healthcare innovation, the impact of digital health, the future of medical education, etc.  There were so many amazing sessions to attend and so many smart people sharing what they know.

It was fascinating to learn about the newest technologies and the newest trends in healthcare.  But the single greatest trend I learned about at MedX, the one that clearly as the power to be the most effective in healthcare?  The serious involvement of patients on every level of care.

I think part of the reason authentic patient-involvement in healthcare is still a struggle is because patients don't yet know their own power - their own value to the conversation.  It's so easy, as a patient, to feel the doctor has all the knowledge.  But I am learning the patient has a lot of the knowledge as well, it's just a different kind of knowledge.

I tried to gather some of my favorite nuggets from MedX.  There were SO many.  But, for brevity, I placed them together in a Storify below (click through them to see them all)...my greatest hope would be that we can eventually bring these ideas to the CF healthcare:

I also wanted to share this short video that was shown at MedX about one of my favorite people in the CF community.   Emily, a CF adult, shows us the power of patients who refuse to settle for the status quo.  Emily shows us that patients in a broken healthcare system don't have to sit back and wait for it to be fixed. We have the power to begin fixing ourselves:

All MedX sessions can be watched online here for free.  Everyone is welcome to join the ongoing join the conversation on Twitter at #MedX (other great hashtags to follow include #epatient, #patientengagement, #CFbigidea, #hcsm).  

Because we're in this together,

Thursday, October 1, 2015

Happy Birthday, Bennett!

I was so busy doing life and celebrating Bennett's birthday yesterday, I didn't even have a chance to sit down and write this post yesterday.  But I wanted to share a few thoughts as we have arrived at Bennett's 6th birthday.

Bennett is thrilled he is now 6.  There is so many things he is celebrating: Kindergarten.  Missing his first tooth.  Learning all of his letters.  Finding best friends.  

Brian and I celebrate all those things and much much more.

Behind closed doors, Brian and I are celebrating having made it six years since Bennett's Cystic Fibrosis diagnosis.  We celebrate that Bennett's lungs are still very healthy.  We celebrate that six years in age is an important year with regard to CF clinical trials access.  Drugs are most available to trial for those 6 and up.  It gets even better for us once he turns 12.

We celebrate that we, too, are doing well - our marriage and our family.  Bennett's CF at birth was rough and there have been many moments that have felt like an uphill battle.  But today we celebrate that the battle with CF is, in this moment, in the shadows.  Today we celebrate good health and a little boy who is thriving! 

In some ways, the last 6 years have felt double that.  It seems like a lifetime ago that Bennett was spending 28 days in the NICU...struggling with C. Diff....spending a month at the Dallas Feeding Clinic...having his rectal prolapse surgeries...

But, most recently, as things have improved with his health, the moments are clipping by a bit faster.

Our biggest celebration today at 6 is a personal one.  I'll never forget that moment when I sat in the cold plastic chairs at Children's Medical Center in Dallas at the CF Education day looking up at the big screen with a slide placed before myself and the other CF families around me.

The slide, which I have yet to ever been able to find again, showed how acquiring bacterias for CF patients can affect their overall life expectancy.  It was clear that the longer a person with CF gets without acquiring an infection, the longer their life expectancy.  

I prayed for 6.  "If we can just get to 6," I prayed deep within my heart.  "I know how this goes.  I know the end of the story, if we don't get a cure.  But can we just get to 6?"

And here, we are.  He is 6 and has yet to have an infection.

So, today, I am incredibly thankful for this moment...for 6 years of healthy lungs.  

The day will come when I will get the call that he has acquired an infection.  It's inevitable.  So many CF families have already experienced it, much before the year of 6.  So many have not and will not for many more years.

I don't know why some CF lungs acquire infections/bacteria early and others late.  Brian and I have little control over CF's path.  So much of CF is environment and genetics.  But none of that stuff really matters anyway.

My sharing this is only that it's my personal thankful moment to be here at 6 and be as healthy as I had prayed he could be.

In the last 6 years, we have learned to live life in the moment - to celebrate the little things.  So, here we are at his 6th birthday and I am celebrating the little things, which to me are big things:

Kindergarten.  Missing his first tooth. Learning all of his letters.  Finding best friends.  New access to clinical trials. Clean lungs. Having made it. We've all made it to 6!  

Happy birthday, Bennett!!  

Thursday, September 24, 2015

Texas Medicaid Patients still wait for Orkambi access

When you're fighting CF, you're fighting time.  Every day that goes by is one more day the disease can grasp you tighter or it's one more day your body has to fight.

So, imagine how frustrating it must be for those 82 Texans on Medicaid who cannot get access to a medication that they quality for, that sits on the market and that may extend their life?

Orkambi is the second drug ever on the market that addresses the underlying cause of Cystic Fibrosis. Orkambi works for only 28% of the CF community and costs about ~$250,000/year.  Kalydeco, the first ever drug that addresses the underlying cause of CF benefits about 10-15% of the CF community and costs ~$350,000/year.

These are big price tags for health insurance policies to pay.  So, it's not surprising that states themselves would be highly concerned about the impact these medications may have on the budgets of state medicaid programs. High drug costs in all diseases are becoming an issue in our nation's healthcare.

This issue is a particular concern for those in my state, Texas.  State lawmakers are trying to do what they can to reign in the cost of new prescription drugs.  The way they are going about it, however, is having a serious impact on those in the Texas CF community.

Concerned over the issue of rising and unsustainable drug costs, the Texas legislature passed a law that went in to effect on September 1, 2015 that states that it is now the job of the Texas Legislative Board (LBB) to approve or deny paying for any new-to-market oral prescription medications that constitute significant cost to the state.

The Texas LBB is made up of four state government offices.  See board members here.  However, before the LBB can make it's decision, it must receive a letter from Texas Health and Human Services Commission giving it's analysis of the medication.  From there, the LBB has 45 days to make it's yes or no decision.  However, at any point, the LBB can stop the 45-day clock if it requests further information.

This new system has the potential of causing big delays for those with Cystic Fibrosis who are trying to beat the clock.  The delays have already begun.  Even though Orkambi was approved in July of 2015, as of today, Medicaid patients still cannot get access.

This requirement of LBB approval does not apply to patients on private insurance, only to those who are on Texas medicaid programs.  But, with a large portion of CF patients on medicaid due to the high cost of care and many adult patients' inability to stay healthy enough to work full time, this means a lot of our Texas-based CF community is and will be affected by this new law and the repercussions of what the LBB decides.

The LBB is strictly budget-oriented.  No clinical staff are a part of this budget decision.  That's why patient advocacy is so important.  Patients and families of patients, like mine, have to tell our story.  We have to talk about life with CF and the impact even small delays can have on the health of our children and those suffering from the disease.  We have to share how access to these drugs are life and death decisions.

It's important to note that Bennett cannot benefit from Orkambi. :(  While it is wonderful and has the ability to help many with CF, it cannot help Bennett.  Bennett does not have the right genetic mutations for it to work for him.  Instead, we continue to wait for a medication that would benefit him.

The CF community is a tight-nit group.  We look out for each other and fight alongside each other. Although Bennett does not directly benefit from Orkambi, I can't bare to think there are families who do qualify who cannot get it for their children.  I will continue to monitor this issue and advocate on behalf of those who need access.

The reason we have the CF meds and access to meds that we have for Bennett today is because someone advocated for them long ago.  I hope to do the same for others in the future.

To the Texas LBB, please say yes to access to Orkambi for those in Texas suffering from CF.  Waiting is simply not an option.

Wednesday, September 16, 2015

Beyond the School of Hard Knocks

Where do you go to learn how to be a caregiver of a child with Cystic Fibrosis or other chronic disease?

A CF doctor goes to med school.  A nurse goes to nursing school. A CF social worker goes to the School of Social Work.  But where does a patient/caregiver go to learn how to navigate and thrive in the healthcare system?

For patients and families like mine, we pretty much attend the School of Hard-Knocks.  We learn on to job and figure it out as we go along.

How do clinicians continue learning, even after finishing school?  Medical conferences.

How does a patient/caregiver continue learning??

I propose we also go to: Medical conferences.

In the next two months, I am excited to attend two medical conferences that I hope will help me gain knowledge, insight and support to keep up with our fight against Cystic Fibrosis.

In October, for the first time, I'll be attending the North American Cystic Fibrosis Conference (NACFC) where doctors, nurses, respiratory therapists, researchers and other CF clinicians go to present and learn the latest in CF research.

This year, more than ever before, caregivers of CF patients are expected to attend NACFC as the CF Foundation has provided a price-break for families of those with CF so they can go and learn alongside the people charged with helping them.  Family members of CF patients have also been asked to present about their experiences.

(Patients, on the other hand, cannot attend NACFC due to the cruel reality of the disease which presents the real issue of spreading dangerous life-threatening infections to each other.  This makes me SO sad.  But portions of NACFC will be available for all who cannot attend to view online.)

There is another conference that takes place next week I'm equally looking forward to attending.  It's called MedX.  MedX is an innovative and cutting-edge annual medical conference held at Stanford University.  This cross-disease learning conference (aka not CF-specific) is made up of clinicians, researchers, patients and entrepreneurs working to highlight the changes happening in the healthcare system and to support learning from each other.

I recently received a scholarship to attend and the invitation to serve as an ePatient delegate at MedX. I will be there representing Bennett.  As an ePatient delegate, I have been invited to share my patient experiences, to help identify ways I think we can improve our broken health system and to share the great things I learn with others through social media (sorry, in advance, Twitter!).

MedX has asked me to be a part of a really interesting panel discussing transparency in healthcare and the value of patients having access to information.  The topic we will be discussing is the recent ProPublica's article, "The Surgeon Scorecard" which received both praise and criticism when the non-profit investigative news organization used public data to help offer patients a way to see which doctor is "better" or "worse".  (Here's a nicely condensed Today Show version of the debate at hand: http://www.today.com/health/surgeon-scorecard-aims-help-you-find-doctors-lowest-complication-rates-t33186).  I am really looking forward to getting to hear in person from the authors of the study and share my own feelings about the article from a patient's perspective.

Being a part of a medical conference may not be interesting for some patients.  And that's ok.  But I think there is something hugely important about patients, in general, being a part of medical conferences and the research that is presented there.  So many clinicians work within silos, sharing information and ideas amongst themselves, in hopes to improve the health outcomes of patients.  But there is no member more invested in improving patient outcomes than the patient his/herself.  So, it's important to give patients a seat at that table.

I am grateful for medical conferences and organizations like MedX and FlipTheClinic and the Society for Participatory Medicine for their effort to give voice to the patients who are no longer passive participants in their own healthcare.  Patients now have the ability to find information, do their own research, track their own health data, etc.  They are becoming their own experts in their care and they need to be recognized as one.  Who knows best what patients need?  Patients do!  So, let's work to learn from them!

There is so much about our healthcare system that is good.  As Americans, we have access to some of the best patient care ever available.  I am thankful that giving patients the opportunity to teach clinicians, learn alongside clinicians and work in collaboration with clinicians will only improve the way we do healthcare.

I never wanted to enter the School of Caring for a Child With a Chronic Disease.  But if I'm going to have to be here, I might as well speak up in class and learn as much as I can!

Tuesday, September 1, 2015

What's it like to live with Cystic Fibrosis AND hope everyday?

Bennett has finally settled in to his nightly sinus rinses.  A fellow CF mom had suggested that we do them during bath time, which is very helpful.  He is very brave every time he does them and says they even feel good.

We give him gummi candy every time he does them.  They are well-earned Star Wars gummi candies. :)

We have gotten pretty good at doing nasal rinses at night.  But it's hard to get them done in the morning - in addition to his doing his breathing treatments, taking his medicines, eating breakfast and rushing to get out the door for school.  So, Brian and I are just giving ourselves grace and doing our very best.  Our goal is to do them twice daily.  But that's a lot to ask of a 5 year old.

I often wonder what it's like to be Bennett.  What must it feel like to live with CF every day?  To have to do treatments and worry about taking medicines daily? What is it like to live with a disease that is most certain to shorten your life unless there is first a cure?

My friend Oli Rayner does a great job providing some insight into what it's like to live with CF.  Oli is an adult with Cystic Fibrosis and recently wrote a forum post about what it's like to live and act hopeful while knowing the disease is fatal and progressive.

I wanted to share Oli's words with others, as I found them to be incredibly insightful and incredibly articulate coming from the point of view of someone who lives with CF every day:
"I think one of the toughest things about living with CF is the psychology and trying not to let your fears of the future undermine your experience of the present.

You are born with a defective gene and even though you may feel fine now you know that as time goes on the gene will express itself more and more and probably kill you when you have only had half the life of a normal person. The psychology of that is really complicated and challenging.

It is not like other diseases where you suddenly feel sick and then find out why and do things to make that feeling of sickness go away.

Often with CF, you get the diagnosis before you feel sick - you feel fine and learn about the horrible things that will happen and the boring, unpleasant things you have to do every day to try to stop the horrible things happening. It is like a Sword of Damacles and it can be a bit terrifying.

But if you stay focused on what you can do today (not what you can't do or what you might not be able to do in future) and what you can do today to make yourself stronger, you can feel great power and unexpected things can happen.

If you have a bad patch it is very hard to know if it is a temporary "blip" or a new normal. Is this the "beginning of the end" or just an unlucky spell?

This makes it very hard to manage life, career and relationships because to do that sensibly you do need some sense of your baseline capacity. I do feel clinicians are too quick to run with the progressive disease narrative (i.e. encouraging us to think new normal vs blip).

I believe this can be a self-fulfilling prophecy sometimes. I expect this "downward curve" psychology may be related to the fact clinicians always feel they need to make us understand the "reality" of the condition and the importance of doing all the treatments. I wonder how the dialogue and background psychology might change if adherence was not the elephant in the room. The cruel irony is that more positive discussions (what can we do today rather than what might happen in the future) might actually help with adherence too.

If you look at how CF outcomes have changed over the last 40 years with median predicted survival increasing from about 5 to 40, it is likely that, at any given point in time, professional consensus expectations around "what life holds for someone with CF" will be based on backwards looking data/observation and therefore lagging the prevailing reality.

Apart from anything else it usually takes years for data to be analysed, published and propagated through the community so even data that the community treats as "current" now is likely to be out of date. This problem will become amplified (changes in consensus expectations around "what life has in store for someone with CF" will happen faster) as new disease-modifying treatments come through the pipeline and our collective psychology will tested even more.

I have certainly had periods where things have been very tough and I have been in hospital a lot with one bout of infection after another thinking my life is basically over. But it turned out to be a blip and I got better. It was not a new normal - I got back to the old normal through some small practical changes, hard work and a very stubborn attitude that says I don't accept that I can't get better.

How great would it be if we sat down with our clinical teams and asked what can we do to move lung function up 10% over the next 6 months or some other positive target that aligns with our life goals and for clinicians to really respond to that rather than saying things like "well you have to understand CF is a progressive disease, etc etc."

I am a realist, sometimes brutally and it can cause problems with those around me who like reality to be dressed up a bit, but I am also a very positive person. I like to think of it as enlightened positivity. What is our situation today? Where do we want to get to? What tools do we have? Let's go!

In my view, the psychology of CF is very poorly understood and it is an area that needs much more research. There are a lot of unspoken assumptions that color the way we think and behave. Those assumptions may be wrong and they may be causing unnecessary harms or blocking achievable gains.

I love this idea of unwinding CF."
Daily battling to unwind CF for Bennett in time,

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.