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The calm after the storm

Friday, May 26, 2017

Finally, our family's "chaos knob" has been turned waaaaay down. Quiet. Calm. Predictable. That's the way I would describe our family's life right now.

Most children like predictability.  My kids seem to love it more than most.  They prefer doing the same thing over and over again.  Not changing the schedule.  Fewest interruptions as possible.

It drives me insane.  But there's no doubt that my kids prefer the chaos knob on low because CF typically keeps the chaos knob turned up high.

Thank goodness that after months and months of wrestling with the knob, we were finally able to gain control again and turn the volume down.

Bennett is doing remarkably well right now.  He has had no issues with his bowels since his colostomy reversal.  He reports his tummy feels good and he is having no pain.  Frequent use of the bathroom is no longer a problem.  And he's gaining weight.  Personally, I think he's looking healthier than I've seen him in a really long time!

One of the ways our family gained control of the chaos knob was getting Bennett the right care with the right team at the right time.

One of the other ways we have worked to gain volume control over our lives is that Brian and I have decided to make significant life changes in benefit of the health of our family.

Since Brian's job requires him to be away from our family and Bennett's health demands constant vigilance, I have chosen to scale back significantly on things that don't directly involve caring for the kids.  This has been a personal challenge for me as I tend to be pretty ambitious. It's hard when my heart wants to do so much but my circumstances dictate the time is not now.

This year, Brian and I found our relationship stressed to a place we never have before.  The children's needs, both health-wise and educationally, have required of us more than we were prepared for.  But, the process of finding balance has taught us the value of perseverance and commitment and have asked us to tease out those things that are life-giving from those things that take more than they can give.

We recently went on a vacation as a little family.  I'll share those pictures in an upcoming blog.  But I can share that taking a break from life was a tremendous blessing to us all.

We've decided to withdraw the boys from school for next year and homeschool them (Avonlea will continue preschool at her school as planned).  This is a bit of an extension that was already happening with Bennett this year.  But, it feels a bit more rogue than I like.  I love my boys.  I love teaching my boys.  I also love sending my boys to school. :)  But, in our process of wanting more peace for our family, we realized we need to get a better handle on their dyslexia needs.

The idea of homeschooling my children feels a bit like moving to a farm.  There is something so joyful about wide open green space.  No more hustling and bustling, meeting other's demands, worrying you're not measuring up.  Instead, there's an embracing of the quiet, slow experience of just being you and meeting the needs of your own.

But going off the grid, as exciting as it is, still feels a bit terrifying.  Will the quiet become too quiet? At the end of the day, will I miss the big city noises?

Thankfully, God has been really present in this decision for our family. Waco has a lot of homeschool co-ops made up of people who homeschool for a variety of reasons.  I have a Masters in Elementary Education so I feel confident to teach them.  Neighborhood children who we didn't know existed several months ago have turned up next door and down the street.

The best part is we will have so much more time to care for Bennett and do the things we want to get done.  Instead of having to keep up, we'll get to slow down.

Even though they acknowledge they will very much miss their friends, both boys are very excited about this decision, which was half theirs to make.  Bennett described it to his friend who was sad he wouldn't be back next year: "but now, we'll get to have double the playdates!"

More changes may be in store for our family as we continue our campaign to bring peace and balance to our home.  But, right now, the chaos volume is low once more.  The calm after the storm.

The winds are gone.  Rain has stopped pouring.  Things are still wet but rebuilding has already begun.  We still feel a bit shaken up but we've never been so thankful for peace.  God is near.  There's a rainbow in the distance.

Bennett returns to school and how he's doing

Saturday, April 29, 2017

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!

Colostomy Reversal Day 2

Saturday, April 15, 2017

::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.

Colostomy Reversal Surgery Success!

Friday, April 14, 2017

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!!!

Flip and float

Sunday, April 9, 2017

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...

How is Bennett doing with his colostomy?

Tuesday, March 7, 2017

We're just over 3 weeks in of Bennett having a colostomy.  So, I thought I would share with how he (and our family) are adjusting to this new normal.

It took Bennett several weeks to become comfortable with his "ostomy" (his preferred word for it).

He would talk about it but he didn't want to look at it.  He still doesn't like looking at it, but it seems more tolerable now.  Colostomies are typically emptied a handful of times throughout the day. So, it's hard to ignore it for too long. Bennett doesn't really mind if people know he has one, but he is protective to not show them what it looks like, for fear that they wouldn't want to see something gross.

This may be a good thing considering all privacy goes out the window when you have a little sister.  When a babysitter recently walked in the front door to babysit, Avonlea immediately began sharing that Bennett has "a bag right 'here' that the poop goes in."  It was really funny to listen to our 3 year old explain Bennett's colostomy.  She definitely understands how it works.

One interesting fact is colostomies makes noise.  Well, to be more accurate, stomas makes noise - when gas passes through.  Stomas are the name for the part of the intestines that sticks outside the body.  Bennett's stoma making noise is just one part of the experience that Bennett truly doesn't have control over.  Gas noises from his stoma is the deadest give away in public that he has a colostomy.  I am always very conscious not to make a big deal about it or even acknowledge it when it happens as it is certainly not his fault.  But, tonight, during family movie night, his colostomy made a lot of noise.  As usual, I didn't respond.  But in the dark he piped up and said, "well, that's a cool party trick."

It's great to see Bennett try to do his best to accommodate his new reality.  I can tell he's really trying to hard to be ok with it.  But, there's no doubt, he hates it and wishes it wasn't there.  Tonight, I heard Bennett lament about his colostomy, "I wish I was normal..." 

Most kids hate having band-aids pulled off - so one can imagine what it's like for Bennett when we have to pull of his colostomy bag, essentially a massive round "band-aid" attached to his abdomen.  He doesn't enjoy that at all.  He also doesn't like to see his stoma.  

But the hardest parts of Bennett having a colostomy right now is that he can't jump at the Trampoline Park with his friends during Spring Break and, since the colostomy makes him no longer independent with his elimination needs, he can't go to school or on playdates without a parent nearby.  That is very disappointing for him and for me.

Bennett and I both tend to try to distract ourselves during the caring-for-the-colostomy process. There are times when both of us are frustrated. Neither of us like having to be huddled around the toilet emptying his bag.  We both tend to delay the process until we can't anymore.  But we both remind ourselves that neither of us chose this and we are thankful for each other in spite of it.  I have shared with Bennett how proud of him I am and how sad I am this is where we are.  He has shared with me how thankful he is that I choose to help him and that he knows that I love him alot.

For me, caring for Bennett's colostomy is probably easier than it might would have been had I not already had to care for an ostomy before.  When Bennett was born very sick 7 years ago, he was taken in to immediate surgery and given an ileostomy (a colostomy and an ileostomy are basically the exact same thing except they are located in a different part of the intestines).  I had a VERY hard time with this at first.  But I felt God used the experience to humble me as a mother.  My decision to accept my role as Bennett's mother then continues to remind me to accept my role with all that it entails now

The other day, Bennett burst in to tears.  I had just told him it was time for us to change his colostomy bag. (Bennett's colostomy bag has to be replaced every two days and we typically coordinate it with a nightly shower.) The tears came partly from his not wanting to take a shower but mainly from his dread of the colostomy bag-changing process.  

It may be hard to see his puffy eyes in this picture but I snapped this picture shortly after he broke down.  His smile is because I told him he could open the package that had arrived in the mail earlier that day as it had something inside created specifically for him to cheer him up and something specifically with his colostomy in mind.

The anticipation was fun for everyone. The package was from my sweet friend and Kappa Delta sorority sister, Karen, who is the designer and owner of Olive + Peony, a small, handmade children's clothing boutique based in St. Louis, Missouri.

Inside was a huge collection of ostomy bag covers... every fun fabric Bennett could love!!!  Inside the green package, Bennett found Batman covers and Spiderman covers and Star Wars covers and lego/Robot covers! Covers galore!  The covers made specifically for Bennett made our putting on a new colostomy that evening a lot of fun!

After his shower, Bennett wanted to try on his new colostomy cover with clothes to see how it fit.  The cover he wanted to choose first?!  The Star Wars one!

I am SO very grateful to Karen for her kindness - for the donation of her time, energy and materials - just to help make Bennett's colostomy a little less scary.  She definitely accomplished that.  He has absolutely loved them.  He said that next morning, "I like to look down at my ostomy now.  I think I'm going to see my bag but now I just see Star Wars!"

Karen makes beautiful clothing for little girls and boys, not colostomy bags.  But she saw a little boy who could be blessed by her handiwork.  I am so thankful to her for thoughtfulness!

"It's miserable and magical" as Taylor Swift sings in her song "22".  That's how most of CF feels like. Thank you, Karen, for bringing the magical.

Update on Bennett

Saturday, February 25, 2017

I thought I'd share an update on our life since being home from the hospital.  We are all doing well.  Bennett is now over the flu. And so is Brian.  Thankfully, the rest of us have stayed well.

This past week, Bennett was able to visit his friends at school after an invitation from Bennett's teachers to visit at lunch.

The children seemed to delight in Bennett, which made him feel very loved.  Bennett enjoyed getting to show off his new haircut, a haircut I hoped would distract the children from noticing the colostomy bag under his shirt.

A mother of one of the children in his class said her daughter told her that seeing Bennett back at school "was just like normal.  It's like he didn't even have surgery."

Teachers and staff were equally excited to see Bennett, which made him feel very appreciated  There were lots of comments about how grown up and how tall he looked.  I'm not sure if it was the haircut that made him look that way or the fact that he had lost weight and looked skinnier than before.  Nonetheless, he blushed over the attention and appreciated the fact that so many people cared.

As his mama, it felt wonderful to watch Bennett experience such love.  I have been there to witness some of his hardest moments.  So, it is a gift to witness some of his most special moments.

It feels good to be home.  All things home feel good.  But, being home can be a bit of an illusion.  It can feel like since we're home, we should be jumping back in to life as before.  I'm having to accept that we just aren't there yet.

Avonlea, 3 years old, has regressed in her potty training.  It's easy to become frustrated with her over it.  But I honestly don't blame her little brain for forgetting to listen to her poop and pee signals.  I'm the only who, this week, bought something at Walgreens completely forgetting I had bought already bought the exact same item earlier in the day.  I'm also the one who went through the whole process of asking for a new prescription from our CF clinic, contacting a local DME company and getting insurance approval for a new compressor for Bennett's inhaled CF medications only to find it wasn't the compressor that was broken - it was that I had simply forgotten to replace all the pieces of his nebulizer cup in the right place causing it to not work right (note to self: that little middle piece is critical).

Our family's stress is still high.  We're slowly coming down from it all but I have to be patient with all of us, especially myself, right now.  It's ok to still feel like we're spinning.

We have been blessed to have had a number of local friends who brought us meals this week and others who have asked offers to help next week.  Far away friends have sent care packages and meals as they wished they could be near to help.  One very kind friend encouraged us to let her to babysit tonight so Brian and I could take care of our marriage, insisting she could be trained on caring for Bennett colostomy.  We immensely appreciate the love and support.  These things really have and do help a lot.

This week Brian and I, along with Bennett's school, made the decision to homeschool Bennett for the next 2 months until Bennett's colostomy is reversed.  While disappointing on a number of levels, this seems like the right thing to do, given all that he's gone through and given what having a colostomy at school would mean for him.  (Many children who have colostomies do go to school full time.  However, Bennett is not yet independent with his colostomy.)

The benefit of Bennett's staying at home from school is that Brian and I will have the opportunity to give him more tube feeds during the day and be more aggressive with his nutrition.  Bennett lost 5 pounds while in the hospital and now has a BMI of 12% (he needs to be at 50%).  So, while we are disappointed by how this surgery turned out and what it means for a new normal for us and for Bennett, we are leaning in to this new reality and recognizing it's opportunities.  As a former teacher, I will work with Bennett one-on-one in parts of his education he could use extra help on and, as his mother, I will help him to gain weight in a way he couldn't at school.  There is a blessing here.  But this certainly isn't the way we expected life to go.  Thankfully, it's just temporary.

We will start planning for Bennett's next surgery in March at our next appointment with the Surgeon and GI doctor.  We are going to meet to talk about how we can best prevent Bennett from having another ileus after his next surgery.  On April 3, Bennett will have a barium enema to make sure his bowels are ready for a reanastomosis/colostomy reversal.  If everything goes as planned, Bennett will have surgery the first week of April (exact date TBD).

Overall, Bennett is doing well so we are doing well.  But we are grateful for friends, family and coworkers who are particularly understanding with us right now as our new normal emerges.

Flu Positive

Sunday, February 19, 2017

I feel like I couldn't make up a crazier story.  Bennett now has the Flu.

The nurse detected a spike of fever around 9pm last night. Bennett had not shown any symptoms.  In fact, he was feeling great.

We had just come upstairs from playing a night-time game of hide and seek with Brian, Oliver and Avonlea in the courtyard outside the hospital.

The fever was just a random catch because in the hospital they are taking vitals all the time.

There was a long list of things that were discussed for causing his fever.  Was his UTI not responding to the antibiotics?  Unlikely.  Was there an infection in his blood from surgery?  Again, unlikely.  Was there a pulmonary issue?  Doubtful.  But, I agreed they could draw blood and run a urine analysis to see what they could find.

Before having to make Bennett do another blood draw, I asked the physician assistant (PA) to confirm he didn't have the flu.

Upon leaving Waco with my dad a few days ago, my mom came down with the flu.  I wanted to make sure that he didn't also have the flu.  The NP agreed that it was worth checking.

A nasal squab was taken and the PA woke me up in the middle of the night to say the blood work had been cancelled and Bennett had been started on Tamiflu.

Bennett slept peacefully last night and woke up this morning feeling great.  Considering we know the source of Bennett's fever and considering he is significantly better than when he was admitted, the team has agreed we can go home.

So, today, we're going home AGAIN!

...this time, everyone in our family is on Tamiflu for the next 10 days.

What a ride,


Saturday, February 18, 2017

I apologize for taking so long to provide this update.  Things felt like they careened out of control for a bit.  But, I think we've finally resolved the problem and will get out soon.  :::high five:::

All day Thursday, Bennett struggled.  He didn't really feel that great, certainly not as well as he had the day before.  He whined a lot and seemed particularly needy.  

This went on all day from Bennett.  Some moments he was playful and content.  Other moments he was irritable and calling out in pain.  The only relief we could get was by venting his g-tube.

In addition, I noticed that all day there was almost no poop or gas coming out of his ostomy. Air could exit through his g-tube but there was no output from the ostomy.  He had belly pain, despite being given pain meds.

By evening, I decided to call the on call ostomy nurse at the hospital.  Maybe his output was normal for someone his age with an ostomy?  I explained Bennett's symptoms.  She reached out to his surgeon who suggested we come back in to the hospital.  The surgeon was concerned Bennett might have a bowel obstruction.

Brian and I waffled back and forth on whether to drive the 2 hours to Dallas at 8:30PM to be admitted through the ER.  But, ultimately, we decided to take him in, especially when we noticed he also seemed to have a slight fever, even on pain meds.  Brian volunteered to take Bennett since he had had the most sleep between the two of us.  When Bennett heard he'd be going back in, he turned into his pillow and cried: "I don't want to go back to the hospital!  I'm ok.  I will go to sleep!"  It was really hard to hear him protests...but we knew it was best.

Bennett finally finds some brief comfort in the ER, while holding the syringe that vents his g-tube from gas pain.

After spending literally all night in the ER at Children's in Dallas, Bennett was finally admitted at 8AM to the GI floor.  An x-ray Bennett showed he had another ileus, this time with stool buildup, so the decision was made to give him a clean out (or at least several enemas) to see if they could prevent a bowel obstruction.  A urine analysis also showed Bennet had a small amount of blood and some white blood cells in his urine.

Back at home, I sent Oliver and Avonlea to school so I could pack and get ready to go back up to Children's for the next few days.  Brian kept me updated throughout the day about Bennett's condition and what the doctors were thinking about his his presenting symptoms.  It seemed that most of the day nobody had a very good grasp on what was going on with Bennett.

At one point, I spoke with Bennett via Facetime.  I was surprised by how much pain he still seemed to be in.  He had gone with his dad to the hospital more than 12 hours before and still he was very very uncomfortable.

Around 2pm, I learned via a text from Brian that Bennett was going in for a sonogram for a potential blood clot in his leg due to complaints of pain.  Bennett had originally complained of foot pain while we were in the hospital last week.  But this symptom seemed to go away once we got home.  This time, however, pain in his foot was back with a vengeance and now included leg pain that no amount of pain medicine was helping.  

After I picked up Oliver and Avonlea from school, I headed straight to Dallas to take over for Brian.  Brian's texts continued to be worrisome.  Bennett was still not feeling well.  And Brian, having had no sleep in the ER the night before, was becoming more and more overwhelmed by an inability to provide Bennett comfort.

While driving to Dallas to the hospital with two children in tow, I realized that the transition of care for Bennett from Brian to me, with Bennett screaming in pain the background, might not be a good idea with the other children.  His screams would likely would alarm Oliver and Avonlea causing even more chaos.  I knew if I could talk to Brian for just a few minutes, then I could take over Bennett's care and relieve Brian to take Oliver and Avonlea and go rest.

So many wonderful people have reached out to me to help in whatever way we need.  When I realized my need for someone to care for the children for just a few minutes once I got to the hospital, I decided text one of those people who offered to help as she lived very close to the hospital.  I asked Amy, the Executive Director of the Cystic Fibrosis Foundation in Dallas, if she would meet me at the hospital in 40 minutes to watch Oliver and Avonlea, just long enough so Brian and I could have a conversation about Bennett's care.  Amy was amazing.  She jumped in her car, met us at the hospital and took care of the kids just as I needed - long enough for me to get my bearings.

Upon arriving at the hospital and seeing Brian and Bennett, I could tell they both were exhausted. Brian had done a wonderful job taking care of Bennett all day and night.  He had tried everything...but Bennett continued to cry out with no relief.

The first thing I did was check in with the nurses on what Bennett was being given for pain.  The plan seemed reasonable, considering we were trying to offer Bennett non-narcotic pain relief.  I tried to calm Bennett down.  But the only thing that seemed to help was if Brian or I would massage his right leg and foot at the same time.  Bennett's muscles seemed really tight.  He also complained how sore his back was.

To me, the pain looked like it was coming from uncontrolled muscle spasms.  The fact that it could be calmed with deep pressure massage made me wonder if he wasn't having "charlie horses" all over his leg.  I asked for a muscle relaxer for him.

The doctor said she didn't want to do anything until they received the report back from the sonographer, just in case Bennett had a blood clot in his leg (a possibility since he had just had surgery).  I asked for the muscle relaxer in the meantime but the doctor was very hesitant.  She did, however, agree to a stronger non-narcotic pain med of IV Ibuprofen.  While that may have helped come, any true relief he got came from Brian and my massaging Bennett's food and leg - for over an hour straight.  Bennett would start to fall asleep for 10-15 minutes but then he would wake up whining he was uncomfortable.

While the doctor waited for the sonographer's report on the blood clot, the nurse came in to do his enema. I explained that I didn't want to do anything more to him until we had addressed his leg pain. The nurse was willing to comply with my wishes but also mentioned that Bennett hadn't peed since 11pm the night before and would do well to pee.  She asked if I would take him to the potty.

Blood had been detected in Bennett's urine, as well as white blood cells.  But the doctor didn't want to assume Bennett had a urinary tract infection (UTI) until the urine culture results came back.  I explained to the nurse that I would be happy to have Bennett go pee but not until we relieved the leg pain.

Eventually the doctor reemerged to report the sonographer found no clot.  She finally agreed to try to the muscle relaxer.

Within 30 minutes or so, Bennett seemed comfortable enough for me to ask him to get up and pee.  He cried on his way to the bathroom.  And then screamed bloody murder when he peed (10 out of 10 on the pain scale is how he described it later).

After that,

he stopped crying completely.

He seemed peaceful in a way I had yet to see have seen him feel since before his surgery.  He sat there on the potty trying to go pee more, even though it was clear his bladder was empty.  I couldn't believe how much calmer he felt.

Burning while peeing, feeling an urge to pee even when the bladder is empty...those both sounded like UTI symptoms to me.  Add to it the fact that he had a low grade fever and we knew blood had been detected in his urine, as well as white blood cells.

I asked to speak with the doctor about the fact that I believed Bennett had a UTI.

She was hesitant at first but I began explaining to her my reasons for while I thought Bennett had a UTI.  She said, "I know they were waiting for the culture results first."  I said, "yes, but those might take days and he needs to be treated now."

She pulled up the urine analysis report and agreed the test results, while not a conclusive culture, seemed consistent with a UTI.  I showed her a video I had taken of Bennett in agony only 2.5 hours before and then showed her how different he looked now that he had peed and been given a muscle relaxer.  At this point, he was walking, talking, standing up straight, smiling, even playing.  She agreed that there was no benefit to waiting and that the evidence looked like a UTI was the culprit.  She ordered him to be given antibiotics asap.

By this point, Brian had already gone with the children to my sister's house for the night.  So, I sent a video to Brian of Bennett in his current form.  Brian was shocked.

Brian responded via text to my video of Bennett feeling so good: "Are you telling me I listened to him writhe in pain all day and it was just a muscle relaxer?"

I explained that the combination of muscle relaxers and his emptying his bladder is what seemed to give him relief.  The reason he didn't pee for over 9 hours is likely due to his fear of pain when he peed.  But that was likely only exacerbating the problem.

And the reason for the ileus/slow bowel?  An untreated UTI.  Many times, if the body is fighting an infection, it will slow the gut.

So, while the three enemas and cupful of miralax we gave him was helpful, they were likely just treating the symptoms of an untreated UTI.  And the UTI is likely due to the bladder catheter Bennett was given in surgery and had to keep for days.

Last night before bed, Bennett was given his first antibiotic to treat his UTI.  At this point, he is staying on muscle relaxers and continues to feel tremendously better.  He had a very peaceful night and has slept all morning.

They started him again on solid food this morning.  We will see how he feels throughout the day.

Day 7 - We've been Discharged!

Wednesday, February 15, 2017

We received the sweetest Valentine's surprise yesterday: 

We were discharged!

Yesterday morning, we woke up at 5:45am with several visits from the Pulmonology and Surgical teams (we usually have 3-5 different people rolling in the mornings - the resident, the fellow, the attending, etc).  Then, around 6am, Bennett was given bloodwork.  Sweet guy was very brave. 

Unfortunately, they didn't get what they needed so they had to come back again a few hours later and redo his bloodwork.  I started to refuse a second around of blood work (since Bennett had had such a rough time with 2 ostomy changes the day before and an early morning blood work attempt that didn't work).  But, the doctor convinced me that if it looked good, they would discharge us.  So, we complied, found he had good results and we were released!

I wanted to share a picture of some of the sweet cards and balloons Bennett received while he was in the hospital. Most of the cards were from his class at school.  There's nothing better than sweet words from tiny people.

Avonlea and Oliver were very excited for us to come home.  It feels good to be together as a family again.  We are very thankful for my parents who came in to town to be with them for the last week.

At one point last night, while I was unpacking from the hospital, Avonlea found this little doll and infant-sized ostomy bag that the Child Life sent home with Bennett.  When she found it, I sat down on the floor and talked to her about the doll.  

I explained that the "little boy" doll had had to go to surgery and the doctor had to fix his body.  But to fix his body, the doctor made his poop come out of his tummy (totally not true but the best way to explain to a 3 year old).  I showed her how to take the sticker off of the ostomy bag, how to place the ostomy bag on the "little boy" doll and how the poop gets in the bag.  Then I showed her how to open the ostomy bag to get the poop out.  

Avonlea really loved playing with it. It was a bit like pretend-playing "put a diaper on the baby doll," except this was with an ostomy bag.  I wanted to help her feel as comfortable as possible with the concept so that when she sees Bennett's ostomy bag, she won't be scared.  She played with the doll by herself for a while, repeating the steps I had taught her.  Then, she explained to my dad what she was doing. Considering how naturally nurturing she is, I will not be surprised if she doesn't turn out to be a nurse one day.

Last night, the first night in my bed in a week, I slept 13 hours straight.  Did I dream about fairies and sugar plums while all snug in my bed?

No, I dreamt about snakes.

Snakes everywhere.  And I was very freaked out about them.  I had my children with me in my dream. I was worried about my children getting across without being bit by a snake.  At one point, I tried to tell others in my dream about the snakes, who seemed moderately concerned.  But I remember having to tell myself to calm down.  I knew the snakes had never bitten anyone and would likely wouldn't lash out and hurt me.  But I was very freaked out.

Eventually in my dream, I noticed that, however the snakes had arrived, they had each come with nice tiny paper box full of snake food.  In my dream, I knew that if I could get rid of the snake food boxes, I might have some chance of the snakes moving on to somewhere else.  But I didn't know how to do that, since they were each showing up with their own food.

This morning when I woke up, I thought more about my dream.  They say dreaming is how we process the previous day's events.  While I'm no dream interpreter, I think those snakes represent my worries.  My worries feel like they are everywhere - threats everywhere.  I know in the back of my head that things are going to be ok.  Each worry may not necessarily be dangerous itself.  But my worries are scaring me.  And I feel like, if I could just get rid of the "food source" of my worries, then maybe my worries will go away.

It's tempting to think that now we are out of the hospital, things are better.  They are, on some level - home is certainly more comfortable and we are SO glad to be home.  But coming home from the hospital with a new medical condition is also the beginning of something new.  Now we must focus on establishing a new colostomy routine, ordering new colostomy medical supplies, deciding how and when to do g-tube feedings with a colostomy, what kind of cover Bennett's bed needs at night in case his colostomy bag breaks/leaks, figuring out how to do chest percussion therapy with colostomy, whether or not Bennett is going to school with his colostomy, if he doesn't go to school how am I going to get anything done, what clothes are going to fit around his colostomy bag, whether or not having a babysitter to watch the kids is an option, what traveling looks like, etc.

In addition, the time after a hospitalization is typically a time for recovery - recovery for catching up on sleep, recovery of reconnecting to the children, recovery of working through the emotional baggage that came from this surgery and an unexpected colostomy.  It may take us another week, or two or three to adjust to a new normal and to get back to where we were.  But we will do it.  (Ironically just in time to prepare for another surgery.  At least this one will be to hopefully take down the colostomy and put our boy's body back together.)

Thank you again to all of the many many people who have contacted us, who have been praying for us and who continue to follow Bennett's story.  I cannot communicate just how much we appreciate all of the support, in big ways and in small ways.

Thank you for loving us,