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Sigmoidoscopy with Dilation - Numero Tres

Saturday, July 23, 2016

I wonder if this is the way people in the military feel when they deploy, return home, and deploy again.

In many ways, life with a chronic disease is nothing like military life.  Deployed military personnel have far greater challenges than we do on a regular basis, which is why these ongoing hospitalizations give me even more respect for what they have to deal with when it comes to living two separate lives.

There is a rhythm to life, both life in the hospital and life outside of it.  But those rhythms are very different. This every-three-weeks dip into "hospital life" is a shock to the system.  But we seem to adjust just in time for us to return back to "civilian life."

Bennett was admitted Thursday morning for his third sigmoidoscopy with dilation.  Everything went well.  During the procedure, the GI doc stretched Bennett's stricture from 12mm to 13.5mm (up from 6mm).  We have yet to see a huge decrease in the frequency of times Bennett has to go to the potty but that's also not a huge surprise since the hole is still pretty small.  We are all hoping we will see more success with following procedures.

The GI doc mentioned that, although she increased the size of the stricture to 13.5mm today, she was unable to place a 9-10mm catheter through the stricture.  She said that these things are not an exact science and sometimes it takes stretching a stricture pretty far before it stays opened to the size we want.  So, we aren't exactly sure how big the stricture is except that it's smaller than what we want it to be.

I am going to start trying to track Bennett's bowel movements now that we are back home.  It's hard when he's 6 year's old and it's summer.  He can't remember how many times he's pooped in a day and I can't focus enough, through the chaos of summertime, to remember myself.

Nonetheless, Bennett's next procedure will take place in 3 weeks.  The GI doc hopes she can stretch the stricture to 15mm.  After that procedure, we are looking at another procedure to stretch it to a size 18mm.  The pediatric surgeon will likely be involved during that effort.

It's hard to believe we have more procedures to go.  On one hand, these procedures couldn't go any better.  Our doctor is fabulous.  Bennett's body is responding.  Bennett is not in pain. We aren't having to be admitted more than one night.

On the other hand, these procedures are wearying.  Hospitalizations are inconvenient and interrupt our family life.  Bennett is tired of going through all of this stuff.  He wants to stop having to be poked and prodded. Giving your child miralax and enemas over and over again to prepare for surgery really sucks.  Bennett is tired of having to go without food to prepare for anesthesia.

Bennett and I (and Brian and the kids back home) are all focused on making the best of these situations.  We are tremendously blessed.  But sometimes...

I just stand in the hallway of this hospital, see myself in third person - beige walls surrounding me, cold white tile under my feet, the air filled with sounds of beeping machines and quiet chatter of hospital staff - and I wonder:

"how in the world did I get here??"

How did I get to the point where I know hospitals so well?
How did I get to the point where I no longer get nervous when Bennett is in surgery?
How did I get to the point where "going to the OR" feels as straightforward as showing up for piano lessons?

"Ya'll are both so relaxed," the Pre-Op nurse said to me off-handedly yesterday.  I looked at Bennett, who was peacefully grinning ear to ear from all of the "loopy" medicine that he received in preparation for his procedure.  I wasn't sure why she had used the word "ya'll".  I asked curiously, "we are??"  She replied, "oh yeah, you're so casual.  You say, 'yeah, we can do this or, we can do that' like it's no big deal."

Yes, she was right.  I was feeling very laid-back.  I am confident in Bennett's OR team and confident in his ability to tolerate the procedure.  But my confidence ultimately comes from the fact we've been here before...many times.  I might even feel a bit resigned.  Not much point in getting stressed.

I'm very ready for these procedures to be done.  I'm ready to stop the deployments.  I want to stay in civilian life.

But, while we're here, deployed to a place we do not call home, it's so great to have friends visit us in the trenches?

Thank you to our friends Lani and Roy who came Thursday night to play games with us and who brought goodies with them.  We were really glad Bennett felt so good.


We were also excited to be able to see our friend Megan who lives in Dallas and brought her new baby, Maren, to visit us right before we left to go back home.

As we were leaving the hospital, my new friend Katie, a mom of a child with a chronic disease, came and found me at the hospital to drop off some extra supplies her son doesn't need anymore.  Thank you Katie for sharing valuable g-tube supplies ya'll don't need anymore!

And thank you to all of our friends back home and far away who sent messages of love while Bennett was in surgery and in recovery.

While our time away was made sweeter by friends, my greatest motivation to make it home from this most recent hospitalization was to take Avonlea and the boys to see Beauty and the Beast on stage at the Waco Civic Theatre.  Thankfully, we made it in time.


It made my heart so happy to see Avonlea's face when she saw Belle on stage for the first time.  I loved hearing Bennett cackle when Gaston threw LeFou through the air.  I loved holding Oliver's hand during the songs.

Switching between hospital-life and home-life over and over again is challenging.  But, doing so only makes special little moments like these that much more meaningful.

Dyslexia

Thursday, July 14, 2016


The blog has been quiet because my house hasn't been.  It's summer, so that means popsicles, playdates and visits to the pool for our family.  We gear up for another procedure for Bennett next week.  But for now, I'm happy to just focus on enjoying our fairly quiet summer.

Outside of summer fun and our regular visits to the hospital, one other thing that has kept me busy this summer has been working with Oliver, who I mentioned in this blog post has having been diagnosed with dyslexia.

I have given much thought about just how much I want to share about dyslexia on this blog, considering it's mainly about Bennett and his journey with CF.  But then I realized, my sharing about dyslexia is directly connected to CF.

Becoming a parent advocate for a child with a chronic condition like CF is not much different than becoming a parent advocate for a child with an educational disability.  Both push me to share things I've learned and resources that I have found to be immensely helpful, in hopes those around me, who are also struggling, can benefit.

So, for those who don't know much about dyslexia (or want to better understand what Oliver is dealing with), here's a quick Q and A with resources scattered throughout:

What is dyslexia?
Dyslexia is as a learning difference (considered a disability in the educational system) characterized by problems in processing written words into meaningful information.

Dyslexia is often over-simplified as a language deficit.  However, neuroscience shows us the brain is cohesive.  People with dyslexia actually think differently.

Neurodiversity, the diversity in how each of our brains work, offers a series of cognitive trade-offs.

People with dyslexia are often recognized for their difficulty with written language but may also struggle with executive function skills, working memory issues, attention issues, slower processing and issues with rote memory.

The cognitive trade-offs for people with dyslexia are that they are also known to exhibit huge strengths such as big-picture thinking, interconnected reasoning, problem-solving skills, ability to stay focused on a goal, unusual insight into complex systems and great creativity.

Many talented people struggle with dyslexia but benefit from dyslexia too: Steven Spielburg, Jamie Oliver and Richard Branson, creator of Virgin Airlines.

There are many others but my point in sharing well-known people with dyslexia is that dyslexia shouldn't be seen as a disability, something to "overcome," but rather something to embrace.  As long as we limit people with dyslexia to having a disability, we fail to see the amazing thinking process they actually embody.



So does dyslexia mean Oliver can't read?
Dyslexia means Oliver struggles with written language but it does not mean that he can't read.  In fact, Oliver reads above grade level!

Dyslexia looks different in every person.  For Oliver, dyslexia manifests itself in multi-step things that feel incredibly complicated, things like tying his shoes, figuring out a math problem, answering questions from a passage or organizing a project.  For Oliver, handwriting is particularly laborious.

Most people would never know Oliver has dyslexia.  He uses his advanced social skills to hide his struggles.  But school is very difficult for him.  He works extremely hard to do what is asked of him but becomes very overwhelmed having to do this day after day.  Without support, Oliver can easily feel he is not capable of things he is more than capable doing.  This is why addressing dyslexia is really important.  

What causes dyslexia?
Like CF, people are born with dyslexia.  Dyslexia is highly inheritable.  But, unlike CF, no one gene has ever been identified for causing dyslexia.

People with dyslexia have shown to use a different part of their brain to read than do those who do not have dyslexia.

It is believed that as many as one in five people have dyslexia. And most have a parent, grandparent, sibling, aunt or uncle with dyslexia.

With regard to our family, Brian and I don't have dyslexia but we know a few extended family members that do.

We do not yet know if Bennett or Avonlea have dyslexia.

How do you treat dyslexia?
Dyslexia isn't a disease.  So, there is no cure.  And I don't ever expect there will be one (nor do I prefer one).

Dyslexia is simply a different way of processing information.  The best treatment for dyslexia will be when the educational system catches up to science and begins supporting humans' diverse learning processes.

For people with dyslexia, written language can be very difficult.  Those with dyslexia often need to be taught to read in a very specific way.  Right now, Oliver gets on-going intensive tutoring outside the regular classroom to work on reading, spelling, writing and written organization skills.

Oliver will need this intensive tutoring for about 2 years to master his reading skills. But people with dyslexia may always struggle with reading, spelling and writing in some capacity for their entire lives.

People with dyslexia may need accommodations at school to help them reach their potential.  This isn't because something is wrong with them, but it is because so much of the educational system measures learning very narrowly, often with a focus on reading and writing.

As more and more classrooms become multi-sensory and more and more technology is implemented, I hope more people without dyslexia will see just how amazing people with dyslexia are.  As long as we look at people with dyslexia for what they *can't* do, we cannot see what they can.  If you know someone with dyslexia, you will know exactly what I mean. ;)

I love this chart - it shows how dyslexia affects people's reading abilities.  Notice how people's IQ scores go up but their reading scores begin to struggle.  People with dyslexia are typically able to stay up with their peers for a while.  But without extra support, their scores begin to suffer:


How early can you test for dyslexia?
Children can be tested for dyslexia as early as the age of 5.  The earlier a child is treated, the greater their success in school.

It is NOT true a child must wait until 2nd or 3rd grade to be tested.  If a parent or teacher has been told he/she must wait until the child is older/fails in school, it is out of a desire to protect limited school resources, not out of protection of the child.

The first 2-3 years of primary school is spent learning to read.  All of the rest of the school grades are spent reading to learn.  Time is not on your side.  Testing should be done as early as possible.

By law, schools must test students enrolled in the public school system whose parents send a signed letter to the school in writing requesting testing be done.  Many states have a law that testing must begin within a certain number of days from receiving that letter.  Make sure to keep a copy in your own records should there be a delay.

Testing in the public school, while free, may work well or may be too generic to identify the child's specific needs.  If testing within the public school system is too slow or too generic, I suggest moving forward with private testing.

Once test results identify a child has a learning difference that is considered a disability, like dyslexia is, the child will be required by law to receive support services in the classroom through an IEP or 504 plan.  Texas considers students with dyslexia to be covered under a 504 plan.

How do you test for dyslexia?
Educational psychologists have a variety of tests they use to test for dyslexia.  I recommend looking for someone who can give a full "psycho-educational assessment."

The public school's special education system can test but I highly recommend private testing as it can provide more specific testing than the public school system can offer students.

Brian and I felt full psycho-educational testing was important for understanding Oliver's issues in school.  We wanted to have all parts of his cognitive and psychological processing evaluated to give a better picture of what might be going on.

Oliver was tested at the University of North Texas-Denton's child psychological department and the UNT-Denton Speech and Hearing Clinic.  The testing took place over 3 half days.  We were very happy with the process and all that we learned about how he learns and how to help him.

There are many organizations, people and universities around the US who offer psycho-educational assessments starting at age 5 or 6.  Some are very expensive.  Others are more reasonable.

Universities often offer more cost-effective testing as those who are doing the testing are often students themselves learning under professors.  I suggest asking around.

Here is a great website that tells more about testing for dyslexia, specifically: http://www.allaboutlearningpress.com/testing-for-dyslexia

My child has a dyslexia diagnosis. Where should I go now?
Here is a great resource for how to approach your child's school about your concerns:
http://dyslexia.yale.edu/Preparingfor1stSchoolMeeting.html.

I recommend using the Orton Gillingham approach to addressing reading issues with dyslexia.  I also recommend Take Flight.

Once you know your child has dyslexia, I highly recommend learning as much as possible about it. Here are some good books to read: Overcoming Dyslexia, the Dyslexic Advantage, the Dyslexia Empowerment Plan

Here are several documentaries about dyslexia I really love: HBO's The Big Picture, Rethinking Dyslexia (see the trailer here) and Embracing Dyslexia.


I'm a teacher who has students with dyslexia in my classroom.  I am not trained to teach children with dyslexia.  Any recommended resources or advice for me?

Here are two resources I recommend:
http://dyslexia.yale.edu/teachers.html and http://www.internet4classrooms.com/exceptional_children/dyslexia_teacher_resources.htm.

As a mother of a child with dyslexia, I have three pieces of advice for teachers of students with dyslexia (which is pretty much every teacher as dyslexia is the most common educational special need):

1.) Recognize that dyslexia is not just a reading/writing/spelling issue.  People with dyslexia think differently.  This will impact everything they do in your classroom.

2.) Embrace the whole child.  The child is not the child without this learning difference.  Dyslexia is something you will have the opportunity to address in a variety of areas and that you will benefit from in your classroom.  Children with dyslexia will surprise you with their thoughtful insights and their creativity.  They may also surprise you with their tendency to struggle in areas you wouldn't expect.  Embrace all of them.

2.) Believe in this child more than anyone ever has in their entire life. You have the power to make a HUGE life-changing difference.  Ever considered what left-handed people feel like as they live in a right-handed world?  Imagine that experience 10 times worse.  People with dyslexia have to live life in a world made for non-dyslexics.  Written language is the key to success to so much in life, especially when it comes to school.  So, to struggle with written language means school work is arduous, success is limited and expectations are overwhelming.  The fact that children with dyslexia face this challenge every day and do so with great strength is something to be admired.  Children with dyslexia become accustomed to failing, to not meeting the expectations of the teachers/adults around them and begin to hate themselves for what they can't do.  Having a teacher who believes in them - who sees beyond what they can't do and instead sees what they can do - can make a huge difference in the life that child.

Fourth of July 2016

Monday, July 4, 2016

July 4th is my favorite holiday of the year.  I started taking pictures of the boys on July 4th in 2010.  It's a lot of fun to see how much the boys (and their little sister who came along 3 years later) are growing!

July 4, 2016 (Oliver, 8; Avonlea, 2; Bennett, 6)


July 4, 2015 (Oliver, 7; Avonlea, 1; Bennett, 5)


July 4, 2014 (Bennett, 4; Oliver, 6; Avonlea, 11 months) 


July 4, 2013 (Bennett, 3; Oliver, 5)


July 4, 2012 (Bennett, 2; Oliver, 4)


July 4, 2010 (Bennett, 10 months; Oliver 2)


Sigmoidoscopy with Dilation - Numero Dos

Friday, July 1, 2016


Thursday morning, Bennett had his second of multiple procedures to address an intestinal stricture.

Ever played Jenga?  That's how these procedures feel like to me.  Bennett goes under anesthesia, they dilate his stricture, he wakes up and we patiently wait 24 hours to see if an infection emerges to determine whether or not surgery will be required.

Each time we go in to the procedure, each time a Jenga piece is pulled, our stomach drops as we wait to see what will happen.  Because colon perforation in these situations are not uncommon, there is a cautiousness involved. This is why Bennett is being kept overnight at the hospital for observation each time.

Each time things goes well, each time the Jenga game doesn't come crumbling down, there is cause for celebration and a hope that next time will go just as smoothly.



Things went perfectly this time, just as before!  The GI doctor (not pictured above) was able to dilate the stricture from 10mm to 12mm.  The stricture is now double the size it was when we first found it 6 weeks ago during a colonoscopy.

In theory, Bennett's intestines should work more efficiently now, so we hope this will really help Bennett feel more comfortable and not have such an urgency to go to the bathroom.  We should know this week if it worked.

The GI doc hopes we can eventually move the stricture from 10mm to 18mm or more.  She suggests that we try this another 2 or 3 more times, maybe even consider placing a stint to help keep it open.

Then, she'd like to wait 4-6 weeks  to see how things go.  If his symptoms don't improve or get worse, we'll go back in.  If all goes well, we will reconsider going in again in 4-6 months.  The goal is to improve Bennett's quality of life without having to go through invasive surgery.

The GI doctor thinks that after a few more procedures, we might be able to stop having to stay in the hospital overnight.

Our next procedure is planned for Thursday, July 21.


One thing I learned this time is that Bennett does not seem to be having pain during and after these procedures.  The anesthesiologist, whose job is to keep him comfortable during surgery, told me he was surprised that Bennett's heart rate did not go up during the procedure, indicating that Bennett does not feel the stretching of the stricture.  We think it's because the stricture is likely high enough in the bowel where there are no pain sensors.

Not needing a lot of pain meds makes recovery significantly easier. Pain medications can make kids feel nauseous or irritable when they wake up.  So, his not needing much pain med means that waking up from surgery is relatively easy and feeling back to normal happens relatively quickly.

The other thing I learned about his procedures is the anesthesiologists are regularly choosing not to put breathing tubes down his throat.  Although they use something that keeps his airway open, his not having a tube down his throat helps to keep from the spread of an infection to his lungs and helps him to not wake up with a sore throat.



Our hospitalization went really well again, even better than last time since I was able to ask for small some accommodations (mainly no 2AM trash take-out).

Medical experiences with a chronically ill child is like one massive a brain teaser.  It takes a ton of focus, some knowledge and a bit of skill to navigate. Every time I go through a hospitalization, surgery or clinic visit, I try to learn everything I can to use it for the next experience.

Out of curiosity, during meal delivery time, I asked the food worker at the hospital: "Why are you delivering Bennett's food on paper tray with a styrofoam plate when last time we were hospitalized for the same reason our food was delivered on a hard plastic tray with a ceramic plate?"

Bless her heart, the poor food worker started to stutter having no idea how to answer me.  A nurse piped up behind her and explained that she thought the reason we didn't get a hard plastic tray this time was probably because we are on isolation.  Paper trays can be thrown away minimizing germs.  Of course, we were on isolation last time so who knows.  But I am so glad my natural curiosity allowed me to stumble upon the realization that there was another option.

Now having learned paper trays are an option, I will request them from the beginning and hopefully minimize Bennett's exposure to hospital germs.  It's amazing to me how important it is to stay curious as a CF mom.

"Why do you put the gowns on inside the room instead of outside the room?"
"Why are we doing blood work again?"
"Who is the one who makes the decision in this situation?"
"Why do use this type of intervention instead of that intervention?"

I'm often asking, not because I yet have an opinion but because I'd like to be better informed before I do. :)

"Is there anything else I can do for ya'll," the Medical Resident asked me while making evening rounds Thursday night.
"Yes," I said, "can you tell me how we can discharged earlier than later tomorrow morning?"
The Medical Resident responded, "oh, I'd be happy to put you first on the list to be seen by the Attending Doctor tomorrow morning so you can get out earlier if you'd like."
"Bingo," I thought. "That's what I will request from now on."

This morning, instead of leaving the hospital around noon like we had to do last time, we were out the door by 9:30am!



A funny situation that happened during this hospitalization was when is our male nurse randomly asked me, "Are you the mom who likes to do her own breathing treatments?"

I answered with hesitation and a slight grin, "yes, I do like to do Bennett's breathing treatments. But, why'd you ask if I was 'the mom'?" 

The nurse smiled and said the respiratory therapist had asked him that specific question.  

When the respiratory therapist came to our room a bit later, I told him about the exchange I had had with the nurse.  We laughed together.  He said, "when I saw your son, I remembered you.  He pointed to the other side of the hospital floor,  "you used to be over there."  

I learned pretty early on that while hospital respiratory therapists will gladly take off the burden of the parent having to do treatments while in the hospital, Bennett responds best to my doing his treatments, mainly because my doing them seems more like our home routine.

Nonetheless, this respiratory therapist had spent no more than a total of 5 minutes with us last time.  But he apparently remembered me well.  A confession of a CF mom: being considered "memorable" for carrying for one's son's lung hygiene is a moment of which to be proud. :)


While admitted, two sweet women from Child Life came knocking on the door with toys in their hands.  


The floor had reopened and all the children had been transferred back to the main hospital on the very day of Bennett's admission.  Because of this, the hospital Child Life staff was giving toys to all the children on the floor, including the kids who had just been admitted that day.  

We have *so* many toys at home that I almost suggested that we not accept the toys he was being offered.  But decided to take off my normal-mama hat and put on my hospital-mama hat, reasoning that anything that makes Bennett's hospital experience a positive one can't be a bad thing.  

My normal-mama self was willing to give in to my hospital-mama self on the condition that I commit to returning next time with new toys that we can donate to the hospital for them to give to other sick boys and girls to enjoy.  

I cannot even communicate just how meaningful little treats like this can be for families suck in the hospital.  I'm not sure if it's the surprise, the kindness or the newness.  But treats and crafts for kids during hospitalizations are really delightful.  

I look forward to contributing to this delightfulness in other families as a new part of our hospital routine.


And that was that!  Everything went off without a hitch!  Bennett was a rockstar this time around.  He said not even one tear!  

I am not going to lie.  I hate hate hate having to do all this stuff.  This is like our 16th overnight hospital stay this year alone.  I hate the interruption CF causes to our lives.  

I have so many other things like I'd like to spent my time and money on, rather than dealing with hospitals, doctor appointments and treatments.  

But I also recognize that God has provided us so many blessings to fill in the gaps between the frustrating moments.  

As we end this procedure and gear up in a few weeks for another, I am focused on taking deep breaths, recognizing the goodness around us and remembering that this little boy is well worth it all:




What makes a good hospital stay?

Monday, June 20, 2016


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!

Sigmoid Endoscopy with Dilation - Numero Uno

Wednesday, June 15, 2016

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 https://www.olympus-europa.com/medical/en/medical_systems/applications/gastroenterology_1/stricture_management/balloon_dilation.html

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,

Pine Cove in the City

Sunday, June 12, 2016

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.