20 June 2016

What makes a good hospital stay?

What makes a good hospital stay?

Upon asking myself this question recently, I decided to draw up a list of 10 factors that seem to make a hospitalization for our family feel like it went really well or really not.  

Here is my list:

Factor of a good or bad stayGood Hospital StayBad Hospital Stay
Type of AdmitPlannedEmergency
Pain InvolvementNo PainPain
Trust in the CliniciansTrustingNon-Trusting
Room SizeSpacious RoomCramped Room
Family/Advocate/FriendCame alongNot there
Length of StayShortLong
Rules at the hospitalMake senseRidiculous
Bathroom Water PressureGood water pressureLow water pressure
Items from HomeRememberedForgotten
Hospital Staff InterruptionsMinimal interruptionsUnnecessary/frequent interruptions

Most of these things are things that nobody has a lot of control over.  Things such as the patient's pain level, how long one stays at the hospital or whether or not the hospitalization is planned are not often in anybody's control.  But, at least, knowing these factors can help me understand why sometimes hospitalizations feel like they go better than others.

The one thing about being in the hospital is that it tests everything within you as a human.

Being in the hospital, whether you are patient or the caregiver, can feel like a full loss of control. 

In the hospital, 
* People can interrupt you whenever they please.  There's no lock on your hospital door. 
* People constantly touch you (can I listen to you? can I touch right here?  can I see right there?)
* People want to talk to you when it's convenient for them, but not necessarily for you.  "Oh, it's 6:30AM and you're sleeping?  Sorry about that.  Anyway..."
* You have to wear lots of monitoring devices until the doctors decide they don't want to monitor you anymore.
* You have no way to protect your sleep while in the hospital.  Hospitals are noisy and work around the clock.  Hospital staff work on their own schedules which may or may not coincide with other staff members or your sleep schedule.
* You can't be with your immediate family. Visiting hours, restrictions on children and sleeping arrangements that accommodate one caregiver at a time make it extremely difficult for families who face long hospitalizations and who live out of town.
* You eat only what the hospital says you can eat. 
* You aren't allowed to give yourself medicine.  The nurses have to do it for you.
* You often have to pay to park your car at the hospital, even though you didn't want to be there in the first place.
* You can't leave to go home until the doctors tell you you can or you'll be stuck with the bill, if you do.  Insurance won't pay if you don't get permission from the doctors first.

While it's true so many factors to a hospitalization cannot be controlled, there are others that can.

I wanted to share four ways I noticed (and appreciated) that Children's Health Children's Medical Center is trying to improve patient care during procedures and hospitalizations...

Ways hospitals are doing it right #1: Go the extra mile

During our recent colonoscopy at Children's Medical Center in Plano, I appreciated that, tucked inside a folder the nurse gave me with several important documents regarding anesthesia and Bennett's procedure, was a little piece of paper and pencil so I could write down any questions I might have for the doctor.  

I really loved the extra effort the staff went through to provide a pencil and paper for stressed out parents to use either before meeting with the doctor or during the visit.  That extra thoughtfulness meant to me somebody somewhere cared about me in this moment.

Ways hospitals are doing it right #2: Connect with the pediatric patient in a meaningful and personal way

I really loved this.  After Bennett's procedure and while he was still in recovery, Bennett was given a teddy bear as a gift from the hospital.  This was a fun surprise for him to wake up to.  

On top of that, the staff created a card for him with stickers and his name on it.  Inside was a sweet note signed by his nurses.  That extra touch and connection to the child has lasting abilities for children with chronic conditions and their parents.  It's easy for a parent to reason: if you took this kind of care in making my child a delightful little card, there's a good chance you took this kind of care of my child during surgery.

Ways hospitals are doing it right #3: Inform caregivers about who is who in the hospital

This idea apparently came from the medical residents themselves.  When Bennett was recently admitted to Children's, which is a teaching hospital, we were given a wonderful list of all the residents, medical students and attending doctors that would be caring for us during our stay.  It was a very useful tool that both Brian and I appreciated.  

If I could improve on this idea at all, I would suggest that, under each person's name and picture, be placed a role description of that person's job.  Everybody on the list we were given were listed as a doctor.  But doctors some are more decision makers more than others.  Patients would be well-served to understand the difference between an Attending Doctor versus a Medical Student.  But either way, this was an excellent resource and one I hope more hospitals will adopt.

Ways hospitals are doing it right #4: Identifying patients goals and meeting them

One of the new things in the hospital rooms are white boards that the nurse and patient are directed to fill out together.  Recently, our two visits to Children's Medical Center we appreciated our nurses who utilized these white boards.  The white boards include a lot of useful information for the patient.

The question on the board I appreciate most is, "What can we do today to exceed your expectations?" It's a tough question for me to answer because I often don't expect my expectations will even be met, much less exceeded.  So, I love nurses are beginning to ask this question.

When asked this question during our last hospital stay, Brian and I shared that we hoped Bennett could get off his monitoring devices as early in the day as possible and that we ultimately wanted a good night's rest. 

The nurse seemed to really identify that those two things were important to us and seemed to make a special effort to meet both of those desires.  However, it took only a shift change before the benefits of this white board were lost.  Even though our desires were up on the wall for all to see, no one but that first nurse ever seemed to notice.  Despite our voiced desire to have a good night's rest, it was the trash lady who came in at 2AM and woke us up that kept our voiced desire from being met. Nonetheless, it was a good effort that I hope continues and spreads to other parts of the hospital system.

Speaking of hospitals, we have a date for our next one.  Two weeks.  June 30th.  

Bennett has been doing well since his procedure so we are prepared to do it again.  

I'm praying this next one will be equally as peaceful as the last one...sans the 2am trash lady!

15 June 2016

Sigmoid Endoscopy with Dilation - Numero Uno

Hooray! This hospitalization went great and Bennett is feeling wonderfully!  We are preparing for discharge in the next few hours.  As the doctor said to us this morning, "the best hospitalization is a boring one!"  And, thankfully, that it was!

Our morning started early yesterday.  We spent the night at a local hotel the night before, since we live two hours away, so we could be at the hospital at 5:45am.  

Despite Bennett's recent traumatic surgery in January, Bennett was in great spirits the morning of his procedure. 

Bennett literally counted down the days to his surgery starting a week out because he was so thrilled he was going to get the new toy he had wanted.  In our family, hospitalizations/invasive procedures usually equal a small treat.  Bennett's excitement over his new toy seemed to really set the tone for his procedure, in addition to the fact that Brian and I were very peaceful going in.  

My mom volunteered to come stay with us for a few days to allow Brian to be able to be with us overnight and throughout the procedure.  This really helped us pay attention to his needs while knowing the other two were being care for.

By now, we are now really well-versed on preparing Bennett to back for surgery.  During pre-op, we ask the nurses give him versed (pronounced "ver-said") by g-tube to relax him.  This makes him really loopy.

Then, they take him back to the OR where they give him laughing gas to help him sleep.  Once asleep they will give him an IV.

I've been told that "how one wakes up from anesthesia is determined by the way one falls asleep."  So, I was really happy when Bennett left our side for the operating room completely happy.  I had hoped that would mean his emergence from anesthesia would also be peaceful.  And it was.

Everything with the procedure itself went great.  Bennett did beautifully both during the procedure and in the hours afterwards.  His pain was kept under control and he showed no complications all day.

Picture of balloon dilation found at

When Bennett went in for his balloon dilation, his intestinal stricture was 6mm wide.  The GI doctor, under the watchful eye of the pediatric surgeon she elected to be there to advise her Bennett's situation, widened the stricture with the dilation of a balloon to 10mm.

The hope is that the GI doctor can eventually widen the stricture to 18mm to better allow for normal stooling.  However, this widening will have to be done in small increments allowing for tissue healing in between.

The biggest worry with widening strictures, which requires tiny tears in the tissue, is perforation (a hole) of the colon.  Because the stricture, created by inflammation, has to be torn to be widened, there is a very real risk of accidentally tearing a tiny hole in the intestinal wall.

If a perforation would happen, that would mean poop could enter into the abdominal cavity, by accident, which would not be good and could make Bennett very sick.  So, if we were to find a perforation, Bennett would be required to undergo surgery to fix it.

The surgeon mentioned this morning that he is not worried about Bennett this time.  Typically they see symptoms within 24 hours of the procedure.  This is why we stayed over night.  Since we have seen no fever or symptoms of infection, we can feel confident that Bennett's procedure went off without a hitch.

Due to the risk of perforation, the GI doctor worked very slowly to open/tear the stricture.  This required her to tear open the stricture only 2-4mm at a time.

That means that in order to move from 10mm to 18mm at 2-4mm at a time, we will need to do this same procedure several more times, starting in a few weeks.

Thankfully this experience being a really good one will hopefully set us up for another good one next time.  I admire his resiliency and trust.  With as much as he's had to go through, I don't think I would be so accommodating to those around me.  I'm grateful he keeps taking these experiences in stride.

Last night, I went to the cafeteria to grab some food.  While I was on the elevator, I ran in to a lady who had a lot of fun craft supplies in her hand.  I struck up a conversation and she invited me to bring Bennett to the hospital playroom for a short bit to play.

When I explained that Bennett was on reverse isolation due to the risk of infection control and therefore he cannot play in the playroom, the sweet lady offered to drop by several crafts for him to do in his room.

A short bit later, she knocked on our door with a stamp set and a mini backpack full of paint supplies and other projects in her hand.  Bennett and I were both beyond delighted at the thoughtfulness of both the woman who had dropped the supplies off and to the people who donated the supplies to the hospital.  Bennett really enjoyed the distraction.  I really enjoyed seeing him having a happy hospital experience.

It feels good knowing Bennett is leaving today feeling himself. I hate that we have to come back for more procedures.  Personally, I'm so so so over hospitals and surgery.  But we won't focus on that right now.  We've got summer to enjoy and swim lessons tomorrow!

Living life in the moment,

12 June 2016

Pine Cove in the City

When I was in 6th grade, I discovered overnight camp.  Not just any overnight camp but Pine Cove Christian Camps (based in Tyler, Texas).

I fell in love with Pine Cove that first year and returned every summer until I could be a camper no more.  Then, I returned as a counselor.

This past week, twenty-six years later, I got the opportunity to introduce my boys to all things Pine Cove.

Picture courtesy of Pine Cove Camp In The City (Oliver is in the navy shirt)
I loved Pine Cove as a child because it felt like a tiny piece of heaven - a really fun place where I felt completely safe, where I felt fully loved and where I felt God particularly present.

For many years, I have looked forward to giving my kids the gift of Pine Cove.  Neither of my boys, ages 6 and 8, are ready for overnight camp.  But I had the opportunity this summer to send them to the Pine Cove "Camp in the City" program.

Camp in the City brings summer camp to elementary students in cities across the South by partnering with local churches to offer a modified version of the Pine Cove experience.

Some typical camp experiences that can't be be transported (like horseback riding, lake skiing and sand volleyball).  But Pine Cove has figured out a way to bring other really special activities with them on the road.  Most importantly, Pine Cove has figured out how to bring the best part of camp with them: the counselors, whose energy and love are infectious.

Picture courtesy of Pine Cove Camp In The City (Bennett is on the far left in the red shirt)
One of the uniquely fun things about being a camper at Pine Cove is that you don't know the counselors names.  Each counselor, upon being hired to work at Pine Cove, is given an opportunity to tell stories about themselves.  These stories are what develop the playful name they will be called during their entire duration of working for the Pine Cove family.  Campers enjoy spending all week trying to guess counselors names.  But counselors don't usually reveal it until the last day of camp.

Bennett's counselor's name this past week at Pine Cove was "BisQuits and Gravey" (he went by "BisQuits").  Oliver's counselor's name was "Head Over Wheels" (he went by "Wheels").

When I was a counselor at Pine Cove, my camp name at Pine Cove was "Sparkler."  My name story is that I love America, particularly red, white and blue.  In fact, in college, before I ever met Brian, I had wanted a red, white and blue wedding on July 4th and swore I was going to name my first daughter America (and call her Meri).  My wedding story gets even more bizarre in that, at the time, I had wanted my groomsmen to wear blue and my bridesmaids to wear red.  Of course, as the bride, I had planned to wear white.  I had wanted to have fireworks to go off right after the groom and I kissed.  This story, combined with my bubbly personality, got me named "Sparkler." (Note: You don't get to pick your own name at Pine Cove.  Other Pine Cove counselors get to choose it for you.)

Thankfully, before I met Brian, I grew out of my ridiculous love for all things patriotic. But, in real life, my bridesmaids did end up wearing a shade of red.  And, thanks to my brother and a family friend who surprised me, I did end up having fireworks at my wedding rehearsal dinner.  Instead of having friends and family throw rice as Brian and I left on our honeymoon, we had sparklers.  I still love red, white and blue and the 4th of July.

Brian did not grow up with Pine Cove and, until this week, didn't really even understand my deep love for Pine Cove camps.  But Pine Cove is one of the reasons I chose Brian.  My 6 years of attending Pine Cove each summer gave me access to observing the behavior of college-aged men and women counselors who were confident in themselves, compassionate towards and seemed to find a way to make everything fun.

As I attended each summer throughout my teenage years, I noticed qualities wanted to find in a future husband: someone who is a leader, someone who is emotionally available, someone who is respectful towards women and someone who has a strong faith in Christ.  I hoped that one day I might meet someone with those types of qualities.  Thankfully, I did.

Picture courtesy of Pine Cove Camp In The City (Oliver on the far left in the green shirt)
Although my favorite part of Pine Cove is that it's a ton of fun for kids, I am really moved by it's mission "to be used by God to transform the lives of people for His purposes and for His glory."

Every day at Pine Cove includes dedicated time focused on understanding better who God is, what God wants from us and how our lives fit in to a bigger story.

Every time I think about my boys having the kind of sit down conversations I remember having in my cabin each summer at camp, I get teary-eyed.  Pine Cove counselors are naturally so good about getting to know their campers, really listening to their hearts and ministering to them where they need it most. I always felt information about God was offered but never forced.  Over time, my faith grew and, through Pine Cove, God meet me where I was.  Brian and I pray the same thing happened for our boys this past week.

An example of this love and spiritual guidance experienced at camp comes is a conversation involving Bennett retold to me by the Pine Cove nurse and as I remember it. (Pine Cove takes safety very seriously.  They always have a camp nurse on staff when camp is in session.  This is the very reason I felt very confident sending Bennett to camp despite his needs.)  

Bennett, while in the nurses office, said to the nurse, "Did you know you can't hear God?"
The nurse replied, "Yes, you can."
Surprised, Bennett inquired, "You can?!"
The nurse said, "sure you can.  Did you see my animals?  That was God talking to you...Did your momma give you a kiss this morning and say 'I love you'?  That was God talking to you."
Bennett asked, "So God speaks through people??"
The nurse answered, "Yes, when we say nice things to others."
Bennett replied, "Oh, like you are to me!?"

This conversation later lead to an ah-ha moment Bennett had in the car with me on the way home from camp a few days later.  He said, "Mom, I think that if you speak in Spanish, God speaks to you in Spanish...Otherwise you wouldn't know what God was saying."

Bennett, at 6 years old, may not fully understand how God speaks to us.  But I love that he's having these conversations with people who love him.

Picture courtesy of Pine Cove Camp In The City (Oliver is in the navy shirt)
It's tradition at Pine Cove that counselors give each camper a personalized "Character Quality Certificates" at the end of the camp week.  This was always one of my favorite parts of Pine Cove.

Even to this day, I have every one of my Character Quality Certificates given to me as a child at a camp.  My counselors found parts of me that they liked and shared that with me.  It's special as an adult to look back at my child-self and recognize parts of me that I hope I still behold today.  Words often used by my counselors to describe me throughout my the six years of being a camper were: enthusiastic, determined, friendly and smiles a lot.

So it was special to experience this tradition with my own children at the end of camp.  I see lots of great qualities in my children ever day.  But I was quite curious what others see:

Bennett's counselor, BisQuits said about Bennett: "Bennett is insightful, able to understand difficult concepts.  Bennett is very confident, believing in his own personal values.  And Bennett is considerate, always thinking of others before himself."

Oliver's counselor, Wheels, said, "Oliver is loyal, which is a blessing those in authority.  He is courteous in his words and actions. Oliver is eager, looking forward to what lies ahead."

Brian and I thought both counselors described the boys well.   I plan to hang these words in their room throughout the year for them to see so they can remember who they are and continue to live up to the parts of themselves that God made them to be.

Picture courtesy of Pine Cove Camp In The City (Oliver is in the red shirt)
Oliver and Bennett really enjoyed Camp in the city.  Oliver described his Pine Cove experience as a 10 out of 10.  Bennett's favorite part of Pine Cove was the singing and jumping around.

I hope the boys can go back again next year, although I don't know what next year will bring.  But either way, I'm grateful to have just shared a part of my childhood with my boys this past week.

This is me at Pine Cove in 6th grade, circa 1992:

There's something really special about being able to share with my child the very things that made me the person I am.

Maybe my children won't continue the Pine Cove tradition of attending each summer. Maybe they won't ever be hired on as a counselor and be given some silly name.

But I hope they will always know that, what my parents gave me, I want for them: a sense of safety, the feeling that they are fully loved and the awareness that God very present in their lives.

04 June 2016

Biopsy results & addressing the stricture

It's taken more than two weeks, 4 emails, two phone calls and the coordination of one GI doc and two pediatric surgeons at two different hospital systems but we finally have Bennett's test results and a plan to move forward!

I've delayed on blogging for a while.  Part of it has been because we've had a lot going on here: Bennett's CF Walks around the country, Bennett's graduation from kindergarten and a week-long trip to Missouri.  But I've also put a pause on blogging for a short bit because I just needed some "not CF" time - time to just forget about CF for a while - willful denial, if you will.  Sometimes, when I feel like I'm swimming in CF, I just have to step out of the pool, dry off and then choose to get back in.
We head back in to the pool in a week and a half.  Here's the update:

1.) Bennett's Biopsy Results came back NORMAL indicating he is not suffering from Crohn's disease.

This is what Bennett's GI doctor said about his biopsy results:

"I can tell you Bennett does not have Crohns today – biopsies are considered gold standard.  But they only assess a point in time.  So I don’t know if he will never have it – chances are low – it not common in CF."

2.) Bennett's testing from his colonoscopy showed he has mild lactase deficiency.  The GI doctor recommended that we remove dairy, try lactose-free products or Lactaid pills (since kids with CF get a lot of calories from diary) for a 2-4 week period to see if it makes any difference for Bennett.  His lactase deficiency might be causing his frequent urges to go to the bathroom and stomachaches.

3.) Bennett's pediatric surgeon believes his gastrointestinal stricture is most likely a complication from his last surgery.  Bennett's GI doc recently spoke with Bennett's pediatric surgeon about her findings of a stricture in his bowels during his colonoscopy.  Upon hearing this information, the pediatric surgeon indicated she believes it very likely may be his body's response from a staple she placed at the very top of his rectum during his last surgery when she took out almost a foot of his colon to address his chronic issues with rectal prolapse.

Although I'm bummed that we are likely dealing with a complication of a previous surgery, I am grateful that Bennett has been under such good surgical care at Baylor Scott and White in Temple with our pediatric doctor whom we love.  She has been meticulous, trusting, caring and, without a doubt, is one of the very best. Although I wish we didn't have to deal with this, I don't regret that we under went our last surgery. I know we did so fully as last resort.

I have great respect for the fact that surgical intervention is always traumatic to the body and, unfortunately, complications do and will, inevitably, happen.  I pray each time Bennett undergoes surgery or a procedure that God will protect him from harm.

Since there isn't anything we could have done to prevent where we are today, it reminds me to be thankful for each day.  We never know what decisions we make today might bring us tomorrow.

4.) Everyone agrees: Bennett's stricture needs to be addressed through balloon dilation, slowly and over time.

So, where do we go from here?  Bennett's GI doctor and pediatric surgeon both agree that Bennett's intestinal stricture needs to be address through balloon dilation.  The stricture, inflammation in the bowel, has created a very narrow opening in the intestine that needs to be slowly forced open.

Image found at:

Surgery can also address is problem but it's better if we don't have to go the surgery route. Complications that must be considered include dilating the stricture too rapidly causing a bowel perforation or excessive bleeding.

Our GI doctor, who will do the procedure at Children's Medical Center in Dallas, has asked a pediatric surgeon in her hospital system to be in the OR when she does Bennett's balloon dilation in order to observe the stricture from a surgeon's point of view and to advise our GI doctor on next steps.

Personally, I feel really grateful to our GI doctor (who is the co-director of our Cystic Fibrosis Clinic) for choosing to be extra thoughtful and careful as she addresses this problem.  It makes me feel good that when Bennett's stricture is addressed for the first time in a few weeks that we'll have two sets of eyes - the eyes of both a GI doctor and pediatric surgeon able to look at it.  Although the GI doctor will do the procedure, should there be any problems, the pediatric surgeon will be there to address it.

Since our GI doctor is connected to our CF clinic at Children's Medical Center in Dallas, our favorite pediatric surgeon who is at Baylor Scott and White in Temple won't be able to be there.  But she indicated to our GI doctor that she wanted to be updated after the procedure and provided her cell phone number should she need to be called during the procedure.  Again, I cannot say enough how grateful I am to have good doctors, across two hospital systems, willing to work with each other to help care for my son.  Every time we undergo surgery, the more anxious I get.  So, this extra support is very reassuring.

The GI doctor shared with me that our pediatric surgeon at Baylor Scott and White in Temple asked that Bennett be kept 24 hours in the hospital for observation based on issues she saw during his last surgery with bleeding and due to the fact that we live so far away from the hospital.  I agreed to this extra precaution.

The reason we have continued to stay at Baylor Scott and White in Temple is because of the excellent care we have received, particularly from the pediatric surgery department.  So, it's hard to decide to move up to Children's in Dallas for this upcoming procedure.  But I think there is great benefit to being in the same hospital system as our CF clinic.  This should be a relatively minor outpatient procedure.  But with children with chronic diseases, and with children, like Bennett, who have had multiple surgeries, complications can be often and serious.  So, we plan to travel to Dallas for this procedure.

5.) Bennett's procedure, a sigmoidoscopy with dilation, is planned for early on June 14.  We will stay 24 hours for observation.

6.) Bennett's next procedure, likely 2-4 weeks later, will be determined by the doctors shortly after his procedure.  Until then, we'll just keep living up summer. :)