24 February 2014

Thankfully, no bowel obstruction after all

Thankfully, we are not going to end up having to spend a night in Hotel "Children's Hospital" after all! "Whew!!" is an understatement!!

After several hours at the pediatrician's office this morning and our local radiologist's confirmation that he/she suspected a bowel obstruction, Bennett and I were sent to be evaluated by the Scott and White Children's Hospital pediatric surgeons 30 minutes away to decide a treatment plan.

We were fortunate to meet with Dr. Perger, the same doctor who did Bennett's last rectal surgery several years ago and a doctor I really like.  She was able to look at the X-ray with her trained eye and determine it was not an obstruction after all.   It turns out that while he is very constipated, he is not obstructed.

Dr. Perger believes, based on our timeline of symptoms, most likely, Bennett recently came down with gastroenteritis (the stomach virus) which, instead of causing him to vomit, caused his GI system to shut down for a few days (resulting in constipation).  He also may have stopped drinking as much which exasperated his situation.

Bennett has never been constipated before (his poops are always incredibly lose).  Bennett rarely vomits.  And he has never cried out as a child in such constant and overwhelming abdominal pain.  The three of these things together, lasting for more than 4 days, eventually led all of us (including several on-call pediatric doctors, Brian and myself) to worry about an obstruction.

Bennett, lying on the floor in pain, at the airport.
Brian and I very much wanted to believe it wasn't an obstruction.  In fact, we gave Bennett Miralax as soon as the plane landed in Dallas yesterday, in hopes we could resolve any constipation.

Bennett struggled to drink the amount of Miralax mixed in Gatorade he needed to drink and instead kept crying in pain.  So, I got smart and we used his g-tube to bolus him the medicine.  We hoped this would help move things through his colon and give him relief faster.

But, hours later, he still screamed in pain.  

Last night, we tried an enema.  But he couldn't tolerate this and cried more in pain.  

We called the pediatric GI doctor on call who suggested we get X-ray first thing in the morning.  His biggest concern was that Bennett might soon become septic due to poop in his small intestine.  Those with CF are at a high risk of DIOS (distal intestinal obstruction syndrome).  A diagnosis of DIOS often has the very same symptoms as those who are severely constipated.  But DIOS is much more serious.

We almost took him to the ER while we were out of town.  But, we knew it would be best for us to take him to our doctors in Texas who know his history.

We almost took him to the ER last night when he kept waking us up crying in labor-like pains.  But we held off because we prefer to bring him to the doctor on a week day, rather than having a weekend skeleton hospital crew assess his condition.

Bennett, this morning, finally at rest...sleeping.

I am glad we finally got answers today but it's hard to know he had to wait so long to get relief.   It turns out, though, relief was not going to come until today no matter what.

As soon as we started to go to our appointment with the Surgeon early this afternoon, Bennett looked at me and said, "I just pooped in my pants."  I excitedly said, "oh good!!"  I knew it was the beginning of our ending.

This was only confirmed by the Surgeon when she stated she did not believe he had an obstruction and felt Bennett's GI system would restart itself in a few days.  Her biggest concern was and still is dehydration.  But we got the green light to put him on Pedialyte and trust his body would recover soon.

By the time we made it back home an hour or so later, I could already see a HUGE difference in Bennett's demeanor.  He has almost completely stopped complaining of pain and has started acting like his old self (singing random songs and playing with his toys).

I am tempted to feel like this day was a waste of my time...Maybe I could have waited it out longer? Maybe I could have known this wasn't an obstruction after all?  I was not able to do anything I had planned to do today (which, let's be honest, wasn't all that exciting as I needed to unpack from our trip). But it's hard to spend the day waiting in doctor's offices and doing X-rays to find it may have been nothing more than a virus.

But, as a CF mom, I have to remind myself to look at situations like this as hands-on teaching.  I learned today: how to better spot the signs of DIOS, how to look for symptoms of dehydration, how the body works when it's sick with a virus, how to get a good X-ray to determine an obstruction (patients must stand up for the X-ray, not lie down due to air in the bowel), who to call first about this issue in the future (bowel obstructions are a surgeon issue, not a GI doctor issue) and how to better read an abdominal X-ray when looking for obstructions.

Before I had a child with CF, I believed it was the doctor's job to know these things, not mine as a mother.  But now that I have a special needs child, I realize that it's my job to be able to spot these things faster, understand what I'm talking about and be able to speak as clearly as possible about my child's symptoms.

DIOS is a lifetime risk for those with CF so I doubt this will be our only brush with it.  But, I now know better what to look for when I am considering whether or not Bennett has it.  Every doctor appointment is an opportunity to learn how to be a better CF mom.

Just glad I didn't have to learn hands-on with a hospitalization this time!!

Suspected bowel obstruction

For the last four days, Bennett has complained of abdominal pain.  He stopped pooping about 72 hours ago (a big deal for a child who poops regularly throughout the day) and now has a low-grade fever.

He vomited once randomly during the middle of the night on Tuesday night and then again on Saturday night several times.  Of course, as luck would have it, we were out of state traveling when most of this was going on.

From almost the beginning of this episode, something inside told me it might be a bowel obstruction - something blocking his intestines.  But, I kept hoping things would turn out and show me otherwise.

We returned to Texas late last night so I took him first thing this morning to our Pediatricians office for an X-ray.  This is what it showed:

Bennett's pain is a lot like labor pains.  It comes and goes, at times, if he is still, he can feel good.  But when it comes, he will scream out in pain.  This has been going on, increasing in intensity for days and through the night.  It's been hard to watch.  I think right now, he's most at peace when he's sleeping.

The pediatrician and Radiologist suspect it's a bowel obstruction.  We are to be sent to Temple, TX for a CT scan where we are closer to the surgeons who will probably take over his care.

Getting an x-ray

I will know more later about what all of this means for us in the coming hours but wanted to go ahead and update for now.

18 February 2014

TEDx Talk: 14 year old with Cystic Fibrosis

I happened upon this today randomly.

I watched this at first because I wanted to gain insight on how I can help Bennett have the type of hope and insight this young woman has with regards to her Cystic Fibrosis.  But then, I was struck.

This message isn't for my son.  It's for me as well.

Such wisdom in this girl's words and such strength in her ability to say them while wearing an oxygen tank and knowing her life may be cut short by Cystic Fibrosis.

Absolutely worth watching:

This is what Claire has done with her desire to live in the present: Claire's Place Foundation.  CF Families, it's worth checking out.

04 February 2014

Discovered: Why Potty-Training Has Been So Hard

Two weeks ago, we finally got some real answers for why Bennett has really struggled with potty training.

During our quarterly Cystic Fibrosis clinic visit at Children's Medical Center in Dallas, we had a chance to meet with a GI doctor who has a special interest in working with CF patients.

CF Clinic Kisses from Sister

For the very first time, I learned of some real solutions to this problem should Bennett continue to struggle with being able to potty train.  We are pretty confident he will not have issues potty training his urine but since Cystic Fibrosis directly affects the digestive system, we wondered if his disease was behind his inability to control his bowels.

First off, Dr. Sathe wanted to give Bennett a rectal exam to find out what kind of feeling he has in that area.  It was hard to see my four year old have to get a rectal exam but he was incredible.  I asked him how badly he wanted to wear big boy underwear.  With a large grin he said, "a lot!"  I then told him Dr. Sathe was going to help him to do that so it would be important for him to come up on the table and let her look at his bottom.  Because he is so motivated to be "like a big boy," he happily got on the table and let her examine him.

She used her finger to find feeling near his rectum.  And what we discovered: he does not have a lot of feeling there.

I was VERY surprised.  She kept asking him, "can you feel my finger here?"  He often answered, "no."

What we realized was some of the nerves in his rectum were likely severed during the two rectum surgeries Bennett had over the last few years due to his rectal prolapse issues, complications of his Cystic Fibrosis.

No wonder that poor child has been unable to control his bowels.  He cannot feel it when it's coming.

Of course, my mommy heart immediately felt sad for him and so sorry for all the times Brian and I inadvertently made him feel badly for going in his pull-up.  Although we eventually came to believe his struggle with potty training was something more than just a "will" issue, we really had no idea just how physiological it was.

Dr. Sathe explained to me that because Bennett does not have adequate feeling in his rectum, he will have to be taught how to use other bodily signals to tell him he needs to go to the bathroom.  She explained he cannot rely on just the "feeling" of having to "go."

This is likely why we did see big improvement a few weeks ago once I explained to Bennett that "passing gas" is a sign he needs to use the bathroom.

Well, somehow, something happened right after that appointment but our boy must have figured something out because the very day after that appointment, he began to show INCREDIBLE improvement with his potty training.

It was as if Bennett figured it out, that he couldn't feel.  And it is as if Bennett recognized he was going to have to pay attention to other internal signs he was having a bowel movement.  We don't know what exactly happened but he went for almost 5 days straight without even an accident!  (Of course, the one day we sent him to school with no pull-up on, he had a huge accident in his pants on the playground... :))

Nonetheless, although we now know of some resources we have at our fingertips (such as using a laxative to create "stomach cramps" to teach him one of the physical feelings of going to the bathroom, an enema that would create regular bowel movements or surgery to investigate further), so far it is looking like Bennett might just potty train himself in the next few weeks.

Of course, we have also implemented the potty chart and purchased the biggest bag of Jelly Belly jellybeans I could find.  But those things were useless without having first discovered what was causing his inability to control his bowels.

It makes me sad to think just how CF affects so many things in his life.  Poor kid confronted with GI issues at birth which then caused eating issues later.  And these GI issues at birth lead to rectal surgeries that have now complicated his ability to go to the potty.  But, this child is resilient and has (and will continue to) learned ways to overcome each challenge.

As I have said before, GI complications of Cystic Fibrosis are annoying.  But they are not our biggest concerns.  The lungs are always our biggest concerns.  Issues with his lungs are the ones that most affect his life expectancy.

So, it is with a grateful heart I write that we learned from the clinic yesterday that he once again had a clean throat culture!  Each time we get a "clean and clear" throat culture results, I mentally tick off in my head one more mark as though I'm keeping track of years on a prison wall.

We have made it to 4 years and 4 months with no signs of pseudomonas, no signs nasty infections in his lungs just yet.  Truly, in the world of Cystic Fibrosis, every single day of clean lungs is a day to celebrate!

Bennett gets a "throat culture" at the CF Clinic.  This involves getting two cotton swabs at the back of his throat.
Bennett spent time at Thanksgiving around his great grandmother who had pseudomonas so we were very concerned he might get it.  But, so far, so good.  It may rear it's ugly head in the future.  Well, we know statistically that it will at some point, one way or the other, but for now, we get to celebrate that pseudomonas is not our biggest concern.

For now, our greatest concern is getting that boy out of pull-ups and in to Superman underwear!  And, for the very first time, I actually expect that it will be really soon!