22 January 2018

Why getting the flu is so scary for Bennett

Since returning home from the hospital two weeks ago, Bennett has been doing really well.  He feels great and is showing no more GI symptoms.  He's on a capful of Miralax a day, which seems to be just perfect for him.  So, now, we are turning our attention on trying to keep him healthy during the flu season.

The flu is always scary when you have a child.  But, considering this is potentially the worst flu season in history and considering the fact that we already deal with an underlying chronic disease like cystic fibrosis, I literally wake up every morning thankful that we have escaped it one more day.

I know I can't do much to prevent getting the flu.  The flu is practically everywhere.  But we're certainly trying to be as safe as possible over here.

There are four main reasons why the flu is particularly bad for Bennett (and all those with cystic fibrosis):

1.) The flu risks serious complications in people with cystic fibrosis, including death.  CF already causes the body to be inefficient in providing the body nutrients and working properly.  The added stress of the flu and lack of appropriate fluids can cause the body to struggle even more.  This can affect the liver and the heart in ways that are particularly serious.

2.) The flu risks Bennett losing weight he can't afford to lose.
Bennett has struggled with gaining weight since he was a baby.  He is consistently underweight and too low for the BMI he needs to have to be healthy.  Getting sick only taps his body more and uses up the limited resources he has.

3.) The flu risks a hospitalization and getting sick with something else.
Our recent hospitalization only further motivates us not to want to land in the hospital.  Thankfully we made it out of our last hospitalization with no flu or additional sickness.  But the hospital is full of bugs that can make Bennett very sick.  So, we want nothing to cause us to be forced back in to the hospital again.

4.) The flu risks damaging Bennett's lungs in a way that he may never fully recover.
This is the part of the flu that most healthy people don't ever have to think about.  Most of the time, our bodies repair themselves without any issue.  But, in CF, it's different.  The word "fibrosis" in cystic fibrosis means scarring and thickening, which is what happens to the lungs when they continue to try to repair themselves. Many times it's a cold or the flu that can bring upon an infection that gets stuck inside the CF lungs.  CF lungs can continue to struggle with it for a very long time, causing damage over time.  In addition, CF lungs are susceptible to lots of rare "opportunist" infections that look for opportunities to nestle themselves in the lungs when the person is already fighting another infection.  It becomes a problem on top of a problem on top of a problem.  So, while the flu may be well over, a new issue in the lungs may rear it's ugly head.

What we are doing at our house to prevent the flu:

It turns out that homeschooling the boys has been really beneficial with regard to their exposure to germs this winter.  In fact, realizing Avonlea was still a risk of bringing it home, we decided to pull her out of preschool for a few weeks to minimize our chances of Bennett getting sick.  Based on the reports I'm getting from inside the classroom, it seems like this has been a good decision so far.

We are minimizing getting out in public as much as possible.  But if we have to get out, we get out during the week, particularly in the mornings, when places are less frequented.

We spend a lot of time outside, playing on bikes and playing in the sun (when it's warm).

We've already gotten the flu shot (something we do every year).  And we're poised to get Tamiflu if necessary.

We are asking anyone who comes over to our house or to play to make sure they haven't been around anyone who is sick in the last 48 hours.

We are washing our hands, using hand sanitizer, not getting too close to strangers and regularly talking about how to prevent getting sick.

However, I feel pretty helpless right now.  It's such a fine balance.  While staying away from sick people is beneficial, staying away from people, in general, can begin to feel depressing.  So, it's a balance between not becoming hermits but also staying safely away from those who may pose a risk to Bennett.

Thankfully, our friends and teachers have seemed to understand.  It helps to talk to other CF parents online who articulate they are dealing with the same fears.

It's hard to be afraid of invisible germs you can't see.  You can feel like you're crazy.  And yet, when I talk to people who have had the flu this year, they remind me I'm not.

It always feels good when someone says to me, "you're doing the right thing" or "that's smart."  It makes me feel better about leaning on my own motherly intuition to keep my child safe.

One of my new favorite crowdsourced websites right now is Flu Near You, a website where you can track flu activity near you.  It's not quite as robust as it needs to be but it's a great way to capture what's going on with the flu on the ground.

Reports say the flu season may be peaking right now so I'm hopeful we're headed out of this flu seasons soon.  Of course, reports are we still have another 11-13 weeks.  And even then, we may still get it.  But I'm trying to do whatever I can to use the knowledge I have to keep Bennett's lungs in the best condition they can be for as long as can be.  That's my job.  I'm his mom.

08 January 2018


We were discharged and arrived home at 9:30pm last night.

This morning, four out of the five of us didn't wake up until 10:30am.  It was so evident that each of us had much-needed sleep to recover.  It felt good to wake up feeling rested.

Since Brian had to go to work this afternoon, we spent the day as a family trying to make up what we lost over the last two days.  We unpacked.  We took down our Christmas decorations.  We shared a meal around the dinner table.  We rode bikes.  We played Barbies.  We rested.

Throughout the day, I found myself reflecting on our recent hospitalization - moments would flicker in my mind - no doubt an effort to process it all.

Today, I reflected on our super fun ER nurse who was with us the 10+ hours while we were there.  He was so on top of everything and made our time there as comfortable as possible.  He asked for things on our behalf even before I did.  (Really, all of our nurses were wonderful this hospitalization.)

I thought back to the Radiologist who made a really bad gastrografin enema just a tiny bit better by her attentiveness to details and compassion.

I laughed to myself today when I remembered how random it was that Bennett and I accidentally ran into our GI doc in the hallway after Bennett's first X-ray early Friday morning.  Although typically I will contact our GI doc to let her know when we go to the hospital, I hadn't yet had a chance to do so since we had come overnight.  From that point on, even though she wasn't on call at the hospital, she stayed in contact with all the doctors involved in our case and helped decide what should be done for Bennett.  In my disappointment of being admitted, she called and helped me better understand his situation.  I rested in the trust I had in her, that she knew Bennett's case well, that she knew we didn't want to be there and that she would advise the docs on whatever she felt was best for him.

I have continually been touched by the many friends and family who have reached out to us via text and social media letting us know that we're not alone, that they are praying for us and that they are cheering us on. 

This afternoon, I received a sweet email from Bennett's CF pulmonologist who had heard from her colleague that we were in the hospital and just wanted to check in.  She even included an email to Bennett to let him know she cared.

I really hate CF.  But these little moments of support and love are a bit like a mother's kiss - Nothing can take away the situation.  But connection of people who care does make it feel just a little bit better.

For everyone who continues to ride this journey with us, thank you.

06 January 2018

This is what crazy is made of - 3:45pm post

(Bennett's face captures his excitement of eating for the first time in two days.
I put his spaghetti in a styrofoam cup, which is weird unless you consider so is the smell of hospital dishes.)

Last night, upon leaving the hospital, Brian and I called our parents to let them know Bennett might need surgery.  Both of our mothers actively discussed plans to possibly come to Waco to help us.

And yet, 24 hours later, we're being told we will be discharged tonight.

As quickly as things went south, things have gone north again.  Don't get me wrong.  I'm happy.  In fact, I'm thrilled.  But this is what crazy is made of.

Normal life...serious condition...hospitalization...possibly more a serious condition...then back normal life.

As quickly as we can accommodate to one thing, we end up having to accommodate to another.  Sweet Oliver cried over dinner tonight because we'd not be staying the night after all.  It was just last night that he was begging not to have to leave our house and to go the hospital in Dallas.  These schizophrenic changes have an affect on each of us.

Nonetheless, being discharged tonight is excellent news.  This afternoon, Bennett's IV blew (aka started swelling his hand) so they took it out.  He begged that we not put it back in.  They said they wouldn't replace it as long as his bowel clean out was done.  About that time, Bennett's colon showed signs it was fully cleaned out.

The docs asked for one more X-ray to confirm.  If it looked good, they told him, he could eat.  So, Bennett has started eating.  If he can tolerate his food, which everyone expects he can, we'll pack up and go back home tonight.

We're really glad this is over.  But, part of me is asking, "Am I crazy? Did it really just happen!?"

Moving along well - 12:47pm post

Bennett started responding to yesterday's enema around midnight so the team started him on GoLightly, which is used to clean out the colon.

At 6am this morning, Bennett was given a belly X-ray.  The X-ray showed marked improvement so Bennett's 8am enema was cancelled.  Surgery has also been taken off the table.

About an hour ago, three Gastroenterology med students, 2 residents, 2 fellows and an attending came into our room to give us an update.  The attending explained that his X-ray looks so well they believe we are on the downhill slide.

Yesterday's x-ray (left) vs today's x-ray (right); black insight the belly is trapped air between the stool

Bennett has been given the green light to start clear liquids.  Once he has nothing in his bowels, they will let him start eating again.  They have started enzymes (without food).  Since Bennett's bowels being cleaned out is what we are waiting on, there is a good chance that we may be discharged tomorrow.

The attending said part of the complication with Bennett's situation is that he didn't present as a classic DIOS case.  DIOS cases usually show symptoms happen quickly (within a few days).  But, for Bennett, he was presenting symptoms several weeks ago.  So, the team felt very confused on whether or not his issues were a stricture, constipation or DIOS.

Bennett is feeling better now that his belly isn't full.  Thankfully, Bennett has felt good most of the time here.

Bennett did share his thoughts this morning when Brian took Oliver and Avonlea downstairs.  He told me, "I was telling Daddy last night about how I'm scared about the future.  I'm scared because I don't know what's going to happen with CF."

I just listened but I wanted to grab him close and reveal to him: that's the *exact* feeling I'm feeling right now, Bennett.

He went on, "It's like you're at home and then you go to the hospital they say you can't eat and you have an enema.  The hardest part of the future is not knowing.  I feel like, it's a God can see it on the top.  But we can only see down at the bottom."

We prayed last night, all five of before Oliver, Avonlea and I left to sleep at my sister's house.  We prayed that God would give Bennett peace, that the treatments would work...and that Bennett wouldn't have surgery or an enema the next morning.  Part of me cringed because I didn't want him to be heartbroken if God didn't answer his prayer.

But Bennett reminded me this morning that God had heard his prayer.

Brian told me that he shared that when Bennett told him how he felt scared about the future with CF that Brian responded to him, "even though we don't know what's going to happen in future, we know that God sees the future and is already there preparing good things for us."  He said he told him, "That's why we can wake up each day and look forward to it because each day is a gift that God gives us, it's a present we can unwrap."

I'll be honest, I haven't enjoyed unwrapping the days where CF is involved.  And hearing Bennett say that he is scared of the future is hard to hear because I know he doesn't even know what statistics say the future holds with CF.  He only knows his short life experience with it.

But it's good to hear him talk about his fears.  And it's good to hear my husband remind me God is there.  And it's good to remember that yesterday is over.  Tomorrow has not come.  Today is what we have.  And today is looking pretty good.

Hoping this is all over soon,

Admission for DIOS - 6:55am post

We have been unexpectedly admitted again.  For GI issues again.  I feel like I'm in shock.

It all started several months ago, Bennett started showing returning signs of a bowel blockage.  Bowel blockage is a common complication in CF.  I feared another stricture but knew compaction of stool is more commonly the issue.

Since there were only slight changes in the frequency of his poops,  his doctor and I decided get Bennett an X-ray about 6 weeks ago.  Everything seemed to look fine on the X-ray so we decided to see if symptoms improved.  If they didn't we were going to do the barium enema in February to see if possibly his returning GI symptoms were due to another stricture forming.

While traveling over the Christmas holiday, Bennett had two episodes where he couldn't make it to the bathroom in time.  His GI symptoms were quickly becoming disruptive.  So, his doctor and I agreed to move the barium enema test up to next week - to Tuesday, in fact.

On Monday or Tuesday of this week, Bennett started complaining of abdominal pain.  Abdominal pain in CF is not that uncommon so I worried a little but figured it would subside. Besides, he's 8 years old so his complaints about ailments aren't always very clear to me.  I couldn't really tell whether or not to worry.  By Thursday's complaints, I decided a bowel blockage might be emerging so i began the at home regimen for such a thing: large doses of Miralax.  I just kept hoping to make it to Tuesday.

But, late Thursday night, upon returning home from of hanging out with some close girl friends, I found Brian with Bennett who was on the potty doubled over in what Bennett described as "9 out of 10" pain.  At that point, I realized we wouldn't make it until Tuesday.

I feared a complete or nearly complete blockage, likely due to a stricture (meaning scar tissue in the bowel may have completely closed up). I got in the car at 1am and drove to the ER.  Brian stayed home with the kids that night.

After a 10+ hour day in the ER yesterday, we are now fully admitted to the GI floor at Children's Medical Center.  The good news is the doctors were able to confirm that there is not a stricture forming from our last surgery.  The bad news is Bennett was diagnosed with Distal Intestinal Obstruction Syndrome (DIOS) - a blockage in his ileum where the small intestine and large intestine meet.

DIOS is relatively common in people with CF, particularly those who were born with meconium ileus, which includes Bennett.  Food gets stuck in the bowel and can't move through.  It's like constipation in that it's stuck poop in the bowel.  DIOS is different because it happens quickly, rather than gradually as constipation does.  Unfortunately, the bowels of many CF people just doesn't have the hydration it needs to move the food through easily.  People with CF are always concerned about bowel issues such as this.  There are not a lot of good medicines for improving the CF bowel yet.  So, there's not a lot you can do to prevent it.

Right now, we've been told Bennett will likely be in all weekend.  They will keep doing gastrografin enemas every day until they can break up the blockage...or until surgery becomes the only option.

Bennett had to undergo two enemas yesterday.  I can't even describe how awful that was...two in one day was literally traumatic for him.  I told the docs that when we do another this morning, they have to give him medicine to relax him and to give him pain medicine.  I refuse to allow that to happen to him again.

I feel like I'm in total shock that we're going through this again.  I feel like...that feeling you might have if you've accidentally driven your car into a telephone I'm still just trying to stand up and shake it off.  But questions inside my head keep arising: "what am I doing here?" "is this really happening right now??"

Bennett had been doing so well.  And then boom, almost without any warning, we're in the hospital looking down the barrel at surgery again.

We knew, since Bennett was born with meconium ileus, he was at risk for DIOS.  But like most of these things, we hadn't really been prepared for what we would deal with.  This is a whole new learning curve and one I didn't want to learn right now.  We just returned from traveling, and Christmas holidays - we're still getting over two surgeries and a colostomy from exactly one year ago.  Besides, we had things planned for this weekend.  But CF doesn't care.

I will not be surprised if Bennett doesn't walk away from this situation with PTSD.  It's' hard to believe that one day you're fine and the next day you're absolutely not.  ....and this is your life.  This was supposed to be the easy part of CF, the early years.  And yet, we're being hammered with these things over and over and over again.

Today, we face another day of addressing this DIOS.  Bennett is showing some small improvements so we are cautiously optimistic.  But we've been told we'll be in the hospital through the weekend, maybe in to next week.  We'll see how today goes.