29 April 2017

Bennett returns to school and how he's doing

Bennett was SO nervous that first day back to school a week to the day he had surgery to remove his colostomy.

As he rounded the corner to enter the classroom, he pushed his hair to the side with his palm and whispered to me, "do I look good?"

My mama heart could hardly handle his first grade innocence.  "You look great," I whispered to him as he entered the classroom to classmates who nearly jumped out of their seats in excitement to welcome him back to school.

I felt choked up. Bennett wasn't focused on the tragedy of what he had missed at school, this, his first grade year, due to complications of his inherited disease.  Bennett was focused on more typical things, like whether or not his elementary friends would approve of how he looked.  How grateful I was for "normal" in that moment.

Bennett's first day of school after being out for 10 weeks due to medical issues.
Bennett has now been in school for more than a week and his teachers report he is doing well  His classroom time is no longer being interrupted by having to go to the bathroom.  And his ability to learn seems to have increased.

I tutor Bennett at home for his dyslexia and I noticed this week that his reading fluency has surpassed anything he had ever demonstrated in our work before.  Just last night, Bennett walked up to me and said, "Mom, I know my days of the week."  This may not seem like a big deal for a first grader.  But for Bennett it is.

Memorizing sequences of information that aren't particularly relevant can be challenging when you have dyslexia.  For that reason, the days of the week have been something Bennett has seemed unable to memorize, despite my many efforts to teach them to him using songs and games.

Last night, without any prompting, Bennett just spit out the days of the week in order (!!).  Bennett's face demonstrated he was almost as confused over his success as I was.  I could hardly believe it.  I pelted him with questions: how'd you do that? when did you learn to do that? did you work on that today at school? did somebody just teach them to you??  He answered negative to all my questions and kept shrugging his shoulders, "I don't know.  I just know them now."  It's like they had been in there, all jumbled up, this whole time and finally they just lined up for him.

Children grow physically and intellectually asynchronously.  But, even in my role as an educator, I have never seen asynchronous intellectual growth like I have witnessed with Bennett this last week.

Brian said it best: "resilience comes with a cost."  While Bennett has been very resilient this last year, much of his energy has had to go to healing his body.  Now that he's GI issues have been repaired and his body has been healed, it certainly seems body's energy has moved towards growing his intellect.  I fully believe that what he's missed out on academically these last few years will be gain in the coming year (barring any new crisis).

Along these same lines, I am hopeful that his body can now start rapidly gaining weight.  We know that CF has already begun the process of deteriorating his lungs.  We want to give him the greatest chance of success by giving him the strongest lungs possible.  A CF child's job is to grow strong lungs.  Weight gain is necessary for that.

Bennett is being given up to 3 formula cans through feeding tube a day, 45ml of Liquigen fat and encouraged to eat a high-fat, high-calorie diet.

It takes a lot of resources to keep him on this regimen daily, in addition to giving him breathing treatments every morning and every night.  But seeing him thrive for the first time in a long time is a huge motivator to keep up this hard work.  I am so proud of how Bennett is doing.

We are looking forward to celebrating Bennett's fight against CF with his CF Walk in Waco next Saturday, May 6th at 9:30-11am at Poage Park.  For those who want to come out and celebrate with us, please wear green and join us!!

There will be another CF Walk in St. Louis on the same day (Thank you Kelly for heading it up!). And there will be two other Walks in Dallas on May 13 (Thank you Lani!) and Raleigh on May 20 (Thank you Cynthia!).  How lucky we are to have people beyond Waco who care so much for our boy!

Thank you to Anna and Betty, our dear friends from Kansas City, for raising money to support Bennett in his fight against cystic fibrosis.

For those who aren't able to come out but want to support helping us find Bennett a cure, consider donating to the Cystic Fibrosis Foundation in Bennett's honor:

Thank you to all those who continue to walk through this journey with us - we celebrate the gift that you are to our family!

15 April 2017

Colostomy Reversal Day 2

::Edit: Bennett was discharged on Day 3 (Saturday, April 15th).  We were thrilled to able to enjoy Easter as a family.::

Yesterday was full of a lot of things...but all of them good!!

1.) Bennett lost a tooth yesterday (anybody know if the tooth fairy visits the hospital)?!

2.) Bennett learned to play the Ukele during a Music Therapy session.  (I had no idea until admission that Children's even offered music therapy but we all loved it!)

3.) Some bunny (a secret little bunny) dropped off personalized little Easter baskets for each of the children yesterday.  They were thrilled!!  (If that was you, thank you from the bottom of my heart!!)

3.) Bennett and Oliver had some sweet friends from Waco who came to visit!  Thank you for lunch and yummy goodies, Bauer family!

4.) Bennett was able to wear something more comfortable than his hospital gown all day because of "Luke's Fastbreaks"!  After our last hospitalization, I started searching the internet to see if I could buy more comfortable hospital gowns. The hospital ones get so old and are itchy. What I came across was "Luke's Fastbreaks" which is an soft cotton alternative to a hospital gown. Hospital gowns are usually necessary because of all of the tubes and cords that have to be worn during the hospitalization.

A young boy named Luke, who was diagnosed with cancer several years ago, came up with the brilliant idea of turning a long tshirt in to a hospital gown by adding rip-buttons along the side of a tshirt so it can handle the cords/tubing.  After designing such an awesome tshirt, he decided to make more so other kids like him could benefit.  I contacted Luke's Fastbreaks to see if I might be able to get one for Bennett.  They cheerfully sent us a few of them, along with some other really fun goodies. Outside of the shirt, we really loved the water bottle they sent as it was designed to allow drinking from it in the hospital bed!  Yay for really great innovation!!  Thank you Luke!!!

In addition, Luke's Fastbreaks asked us if there was a favorite Child Life Specialist they could honor in Bennett's name.  We picked Katie (Katie is who told Bennett about his ostomy during our last hospitalization, a huge support to me and Bennett during that time).  Luke's Fastbreaks will send Katie a little something to thank her for all she does for kids!

5.) Bennett felt good almost all day. We are hoping for discharge today!  He ate well, was in great spirits and was able to increase his lung therapy throughout the day.  His lungs continue to sound clear.  Bennett's IV blew in the afternoon so they pulled it out and started giving pain med orally.

14 April 2017

Colostomy Reversal Surgery Success!

Very early yesterday morning, Brian and the kids and I arrived at Children's Medical Center in Dallas to admit Bennett to surgery for his colostomy reversal/reanastomosis.

It was worrisome that after 30 minutes I hadn't received an update from the OR.  But then, about 15 minutes later, we received a call that the doctor was ready to see us.  We went to a small consult room to talk to the doctor. One of the very first things he said to us when he came in was: "well, it went easier than expected!"

(Picture above: a bandage near Bennett's belly button covers where the surgeon closed up Bennett's stoma/colostomy.  The discolored skin in a 4-5" big circle around the bandage is where the colostomy bag used to daily stick to his skin.  Bennett's g-tube sits above his bandage.)

Something I haven't blogged about but is worth mentioning is that about a month ago, one Sunday morning Brian and I experienced what we thought was an emergency with Bennett.  We packed up the kids and two cars in a rush and headed to Children's Medical Center.  Bennett's stoma (the part of his intestine pulled to the outside of the body) had started to shrink and retract inside the the minute.  I was literally watching his stoma/colostomy disappear.  In addition, that morning, Bennett had started exhibiting another alarming symptom: he had begun pooping from his bottom (wait, is even he supposed to be able to do that??)  Just as we were 20 minutes out of the town headed towards Dallas, Bennett's surgeon called me on the road to say: not only is this ok, it's really really good news.  The doctor explained that Bennett's body was naturally repairing itself.  The intestinal tissue above the skin was going back inside naturally, a sign the body wants to work properly.  Bennett was starting to poop normally because enough inflammation had gone down so he could go to the bathroom normally.

This is most significant because one of the reasons yesterday's surgery went so well was because the intestinal tissue was in such good condition (as it had tucked itself back inside the body for the last few weeks) making it super easy for the surgeon to repair.  The surgeon had fully expected to have to cut out a part of his bowel during surgery yesterday.  But, because the body had basically already reversed itself weeks ago, the only thing the surgeon needed to do was detach the bowel from the skin and sew up the hole in his belly.  Brian and I were so very happy.


An easier surgery typically leads to an easier recovery.  And that's what we have experienced as well.
Bennett's doctors and I having been talking for weeks ago about how we could help Bennett have a swift and pain-free recovery this time around.  We proactively planned to get him off of opioids as soon as possible and to hold back solid foods until it was overwhelmingly clear his body was ready.  This was to prevent an ileus (further paralyzation of Bennett's bowels).  Both efforts have seemed to work well.

Waiting to eat has been the hardest for Bennett since Bennett hadn't eaten since Tuesday.  Thankfully, this morning we got the green light to start eating today, day 2.  The surgeon feels like if today goes well, we can go home by tomorrow.  Being home for Easter would be really really great and earlier than expected! Yay for more good surprises!!!

09 April 2017

Flip and float

To prevent toddlers from drowning, swim instructors often teach youngsters to "flip and float": get access to air and save one's energy until help arrives.

It's a powerful life-saving strategy.  It also might best describe the way I've approached life these last 8 weeks since Bennett's surgery.

When we got home from surgery in February, I tried to keep up with life as usual, despite that Bennett now had a colostomy and would be out of school for 2 months.  "Just keep swimming" I told myself.

But over time, I began to realize I just couldn't keep up.  In addition to it all, Brian's job has been very demanding making it hard for him to be able to help.

Several weeks ago, as I felt life was coming to a roaring crest and my effort to swim against the tide was much too weak, I decided to flip and float.

No more swimming against my life.  No more trying to go the opposite direction of where life is taking me.  "If life has me herehere I will be," I decided.

I started reorganizing my life...identifying my priorities...refocusing my time, resources and efforts. What has to get done right now? What can wait until tomorrow or next month or next year?  

For the past 8 weeks, lunch dates and replies to emails have had to wait.  It's been easy to feel like I'm not a good friend.

Work I have passionately participated in has had go without a leader.  It's been easy to feel like I'm not a good co-worker.

Fundraising for Bennett's Walk has gone very quiet. It's easy to feel I'm not a good CF mom.

I recently turned down a really exciting speaking opportunity this summer.  And I decided not to attend the CF Foundation's annual Volunteer Leadership Conference this weekend, even as it was only 2 hours away from my home.  These decisions were hard.  I shed tears over the changes I have had to make.  But I knew I needed to significantly slow down.

It's easy to feel overwhelmed by what I'm not doing because I'm buried by life.  And yet, I have found that "flip and float" has helped me concentrate on one single goal: keeping access to air and saving my energy until things calm down.

I have worked to forgive myself for not being all things to all people.  I have trusted my friends know I'm buried and I'll come back just as soon as I can.  I trust my co-workers in the projects I'm involved in understand my passion is still there but my time is more limited.  I trust that Bennett's Brigade, all the people who love Bennett and our family and who have supported us in finding a cure in the past will understand why I'm quiet and will carry the energy forward even in our absence.

What I know I am doing is taking care of my kiddos, educating my son, taking care of his colostomy, giving him breathing treatments and tube feeds, taking him to doctors appointments, making sure my kids are fed, tending to my home, nurturing my marriage, getting appropriate amounts of sleep and giving myself breaks.

These last two months have tested my coping skills.  At times when the future has felt daunting, I have focused on the present week, or on the present day, or in the present hour, or even in the present minute... each time reminding myself not "just keep swimming" but "just keep floating. I'm ok."

Bennett is scheduled for surgery next Thursday morning at Children's Medical Center in Dallas for his colostomy reversal.  He is expected to be in the hospital through Easter weekend.

We hope that once he returns home, he will be able to get back to school and our life will slowly return back to a pre-surgery normal.  At some point, I hope to swim a little faster.  The world feels much too exciting to just float.

But, although I'm floating on my back right now, I don't feel in crisis.  Instead, I feel quite peaceful.

The thing is, when you're stuck floating on your back, you begin to notice new things: like blue skies and white clouds and a warm yellow sun.  Who knows, maybe I will choose to stay here for a little while longer...