It's almost the end of January...which means our Great Strides for Cystic Fibrosis Walk is only 4 months away!  I am volunteering to help lead our Great Strides Walk in Waco again this year.  We have a wonderful team this year, which gives me confidence it will be even better than last year.

Here's this year's stats:

This is the time of year when we begin calling out the troops for Bennett's Brigade!   Those near and far who would like to walk with us in May or give to find a cure for Bennett, you can do so through the Great Strides website: http://www.cff.org/Great_Strides/bennettsbrigade


We are doing t-shirts this year, which I am super excited about.  So, I'll post that design up soon.  And Bennett's video for this year is almost done.  What exciting things to come!!

{EDIT: Hanne, thanks for your comment! Good point! We used to be able to Bennett's g-tube in at home without any need for the hospital. However, he has gotten to the point where he tenses his muscles and will not relax enough where we can put the tube in. In addition, when Bennett's tube fell out last time (last week), it had been several hours and already started to close before we found it. I believe the pain from replacing the g-tube comes from dilation of the area, not necessarily putting the tube back in. But it's hard to know with Bennett because he's so frightened of the process it's probably just as fear-inducing as it is painful.  Bridget and Becca, Thanks for both of your comments, as well! :)}


I. Love. Mail.  Brian thinks I'm a nut, as excited as I get about mail.  And, ok, so the reality is that our mailbox is most often filled with junk mail and bills.  But there are those rare few days here and there where I get a real letter or a card!!  This is what happened just the other day and I thought I'd share about it...

About a year ago, I was able to reconnect with a friend I hadn't seen in more than 10 years.  We found each other through Facebook, which was a delight to both of us.  Heather is one of the first people I met when I moved all alone several states away to attend my freshman year of college at the University of Missouri.  She is just a little bit older than me so I saw her as a bit of a mentor.  She helped reassure me I would be ok, even as I had just left home to be one my own for the first time.

 {EDIT: Mary Mac, no the ER doesn't know us by name yet but all of our other doctors and nurses sure do. At this point, I think it's only a matter of time before the we have permanent name badges at the ER. :)}

Well, a middle of the night ER visit is no excuse for sleeping in.  The kids jumped out of bed right on time and my alarm went off early so I could call our doctors.  I had two goals today: take Oliver to the doctor for his residual cold and take Bennett to the doctor for his missing g-tube.

Fortunately, we were able to take care of Oliver first.  We held him back from school today due to cold-like symptoms that weren't improving.  It turns out he tested positive for RSV, an upper respiratory virus.  So, he won't be able to return to school for another few days.


Then, on we went get Bennett taken care of.  This is a picture of the foley that the ER doctor placed in him last night.  The foley is a long soft thin plastic tube that was placed in the spot where the g-tube fell out.  Because the feeding tube stoma spot so quickly fuses itself together, time is of the essence.  So, the ER doctor put in a foley to prevent the spot from healing up.  The foley was taped to his belly to prevent it from coming out.

Previous to our ER visit, I was under the impression that the Children's Hospital ER had the ability to replace feeding tubes when they came out (this is why we traveled 30 minutes to go to that ER).  However, the ER doctor at the Children's Hospital told me that they neither had the access to g-tubes nor could they put them back in at the ER.  Instead, he said, they could give Bennett only a placeholder until we could see the Pediatric Surgeon during clinic hours. 


Last night, the ER Doctor placed the foley catheter in the hole where Bennett's g-tube was and told us we would have to come back tomorrow to get the g-tube replaced when the Pediatric Surgeon was in the office.

I was surprised.  I thought, "aren't there Pedi Surgeons on call?  Isn't this a 24/7 hospital and ER??  Is there not a Pedi Surgeon Med Student on rotation who could help?"  But instead of asking questions, I just assumed it was what it was.  I took his response as protocol since it was in the middle of the night and I hated to have to wake someone up anyway.

But I wish I would have pushed harder.

Late this morning, we met our Pediatric Surgeon at the Pediatric Surgery clinic.  It was good to see her face.  I knew she was going to be able to help.  She is such a very very nice woman - so competent and caring.  But the first thing out of her mouth was, "I can't believe the ER doctor last night didn't call us!!  I have already sent off an email instructing all ER doctors to call Pediatric Surgery when a g-tube issues arise.  They had the ability to help you last night and they didn't.  I am so sorry you had to drive back and forth twice for this!"

I was bummed to hear this.  It would have been so nice to have not had to come back down to Temple for another appointment only hours after I was there.  But I appreciated so much now knowing this information.

This is how these things work when you have a chronically ill child.  As much as I feel like I know a hospital/medical process or system, I find that there is so much I don't know.  When it comes to medical care for my child, it's all about learning through trial and error.  It has been only through trial and error that I've learned which doctors are most helpful, which hospitals are best, ways to save on medical bills, which medical products work and how to get the help I need most efficiently.

It's a bummer that someone didn't do their job last night by not calling the Pediatric Surgeon on call.  Sure, the ER doctor didn't have access to the g-tubes and couldn't put a g-tube in...but he could have called to find someone who could.

Nonetheless, I have learned that, ultimately, it's my job as mom to push the doctors to get what Bennett needs.  And now that I know this information, next time this happens, we will get it taken care of at the ER.  I am just satisfied to know our doctor is going to make sure this kind of thing doesn't happen to other patients in the future.

The top of Bennett's g-tube.

The bottom of Bennett's g-tube, where the water is placed to make a bubble to keep it inside.

Nonetheless, putting in a g-tube in the office meant no pain medication, which was hard.  If we had been in the ER, they could have given him something to make him loopy and relaxed (one more reason I was hopeful the ER could help us).  However, they don't have the ability to monitor his heart rate in the clinic so we had to go without pain medication.  I gave him Tylenol beforehand, which worked well (something I learned through trial and error during our last experience with the g-tube falling out).

This shows the g-tube size: 14 French (the size of the top of the tube) and 1.5cm long (the length of the bottom part of the tube).  Our last one was 14 French, 1.0cm long.  Bennett kept that same size since he was an infant, so it doesn't surprise me that it was time to go up in sizes.

Before the g-tube was placed back in, the doctor and I talked about why it may have fallen out to begin with, especially after we just placed it in a few months ago.  She and I discussed changing the type of g-tube completely but the decision was eventually made to simply put in a longer g-tube.

The doctor theorized that the reason the g-tube fell out in the first place is because he out grew it.  The doctor believes that the current g-tube had not been sitting as far down in his stomach cavity as it should have been.  Instead, it was likely just resting in an insecure place where it was only a matter of time before it came out.

So, I am hopeful this issue is now resolved.  Between ER visits due to g-tubes and rectal prolapse, I'm about done.  My confidence is we have now resolved both issues, which is good because I'm tired of going to the ER (the novelty wore off really quick).

The reality is, though, ER visits for rectal prolapse and g-tubes are stressful and inconvenient.  But it's not the ER visit we really fear.  I am more and more aware of what we face in the future with Bennett: ER visits due to lung issues.  This can be more life threatening and, ultimately, that's what I dread most.

We are monitoring Bennett for RSV.  I didn't even think about having him tested this morning but we think he likely has it too.  RSV is very contagious and there isn't much you can do for it.  Breathing treatments tend to help so we can increase our treatments from twice daily to 3 or 4 per day.  But the reality is, viruses just have to take their course and work themselves out.  I am praying that there are no complications with this for Bennett and for there to be no lung damage because of it.

In the meantime, I'm so proud of my other little guy, Oliver, for getting some medical attention today.  It's about time he gets to be the center of attention at the doctor.  He was so brave today getting his weight, temperature and blood pressure checked. I joked with the Pediatrician that I'm so focused on Bennett's health, I'm afraid I'm going to completely miss something significant with Oliver's health.  But she reassured me I would not. :)

I think both boys will be fine.  G-tube is in.  RSV will be watched.  Oliver should return to school soon.  Bennett is back to normal.

The highlight of my day today was having our beloved babysitter Margaret take the kids for a few hours later this afternoon so I could take a nap (three hours of sleep last night didn't cut it).  It was really wonderful.

And to cap it off, Oliver (with a little help from Margaret) brought home some flowers from the grocery story for me.  It was very sweet and a great cap to a day that that didn't start out quite so rosy but ended well.

I was just falling asleep a few hours ago reflecting Bennett's Cystic Fibrosis. Little did I know that I would get only about an hour of sleep before Cystic Fibrosis would force me out of bed, in the car and back to the ER to care for Bennett. 

Apparently Bennett's G-tube fell out again during the night. 

If it feels like we were *just* dealing with g-tube issues, it's because we were.  Just last October we had the same thing happen. 

So, needless to say, at this point, we may have to simply change the type of gastric tube that we're using, which will be not only inconvenient but will bring on new problems.  But that's to figure out with the doctor tomorrow.



I didn't realize but the Children's Hospital ER do not have G-tubes on hand and do not necessarily place them back in.  Instead, they put in a folly (a very soft tube) in the space where the G-tube came out and instructed us to return tomorrow during Pediatric Surgeon Clinic hours to have it put back in. 

At the clinic, the doctor will have to dilate the hole and replace the tube.  It was horrible last time and I dread doing it again.  They don't give him pain medicine so it's not fun for anybody. 

Nonetheless, I am going to try to drift off to sleep for a few hours before getting up and returning to the doctor.  At least this ER visit wasn't a hospital admission.  I can be thankful for that!

* Use a notebook.You may meet nurses, doctors or therapists in the hallway, or have them come to your room at random times of the day.  Carry around a small notebook so when you speak with one of your hospital specialists about important information, you will not forget what you spoke to them about.  This will also allow you to keep track of questions you may have or important information you will want to remember.

* Decorate your room.  Your child’s room at the hospital is their home away from home.  Consider purchasing children’s removable wall decals, flameless candles, an inexpensive lamp and/or a small vase of flowers to make your room feel less “hospital” and more “home.” Children love bright colors and seeing their name printed.  As an activity for your child, decorate a poster with your child’s name on it and place it on the wall. 

* Consider pleasing all of your senses.  Other ways to make your hospital room more “homey” include playing classical music or putting out good smelling potpourri.

* Communicate your needs through a sign.  Your nurse is there to help you and your child.  However, nurses typically take care of more than one patient.  And, nurses change every shift.  So, if there is something very important you want to communicate to all the medical staff, place a note on your child’s door for the staff to read such as, “Sleeping.  Be quiet” or “Patient Napping.”  This will help all visitors be considerate of use your child’s space and schedule.

* Use a sound machine in your child’s room to drown out typical hospital noises or other voices.

* Set a schedule.  Hospitals are a bit like casinos.  They run on a 24-hour schedule and often fail to provide patients a very clear idea of "day time" and "night time".  Create for your child a morning, mid-day, afternoon, evening and night schedule.  Turn the lights on in the morning and turn lights off in the evening to simulate day and night.  And, if possible, plan in-room activities (craft morning or afternoon game-time) so the child more naturally knows what time of day it is.  

* Keep family in touch.  A great way to share your hospital experience with family is through a blog.  The benefit of communicating through a website or blog is that you can update the blog/website at times which are convenient for you and friends and family can stop constantly asking “how is he/she doing?” as they have access to your information at their convenience.

* Don’t forget meal times.  Purchasing inexpensive microwavable plates, silverware and cups can help when friends or family join you for a meal.  Even if a meal has been provided by a fast food restaurant, it always feels nice to eat on a real plate.  Consider bringing plastic tupperware containers to keep leftover food.  Some families find purchasing salt, pepper, ketchup and other condiments make meal times easier.  You may also appreciate having dish soap on hand to clean any kitchen utensils you keep in the hospital.

* Make bath time more enjoyable.  Hospitals provide towels and sheets.  But there is nothing like having a nice fluffy towel when getting out of the hospital shower.  Consider bringing your own towels and bathmat from home.  You will also want to bring your own soap and shampoo.  Children often appreciate having their own toiletries as well.

* Toddler playtime is more fun with scooters.  If your child feels well enough, bring a toddler scooter to keep your active toddler happy.

* Create a play area for your child.  Children who are stuck in a small hospital room a lot of the day will appreciate having a carpet in the room to sit on or a small table and chairs to play at.  This is even more important for those children in isolation who cannot join the other children in the hospital play room.

* Sleep tight with your own blanket.  The best way to make the hospital feel like home is at night.  You might want to bring your child’s own pillow and blanket.  The more consistent the hospital room is to home, the more at peace your child will be.  For the hospital bed, you may want to bring your own soft sheets.  Hospital beds are longer than normal so when shopping, grab “extra long” twin sheets.  These can usually be found during “back to school” season at Wal-mart or Target.  Or, they can be ordered online.

{EDIT: Heather, here is the theme song.  I guarantee you've heard it before: http://www.youtube.com/watch?v=e9vrfEoc8_g :)}

I thought I'd show proof how much Brian loves Superman...and why our children are destined to love it too:

This is Brian, in 1983, at age 6 dressed in his homemade Superman outfit, which included his "Clark Kent" shirt and belt.  (When we were first dating, I cut this picture out to make Brian a scrapbook to tell him I loved him as much as he loves Superman, hence the weird photograph size.)

Since Brian was very small, his favorite childhood hero has always been Superman. I knew this pretty early on in our relationship.  And I knew what that was going to mean for our boys: they would also likely have a mutual love for this superhero:

They run, jump, save people in distress...and sing the theme song by heart.


Oh, and Daddy often helps them fly.


They watch Superman twice a day, every day during Bennett's treatments.  (Too young for the 1970's movie version, both boys are thrilled to watch 1940's black and white version.)


Oliver received a handmade cape from our friend Bethany for his birthday.  But poor little Bennett was so sad he didn't have one too.  So, in my own homemade fashion, I found one of Brian's undershirts shirts, pinned it and voila!


I know that one day I will have to explain that, in addition to Santa and the Tooth Fairy, Superman is not real.  But, thankfully, I won't have to do that any time soon.  It is obvious that he is very real to their little Superman-loving hearts.

Today, Bennett and I attended his Gastroenterology checkup with his GI doctor.  I can't say enough good things about this doctor.  I went to Bennett's appointment today very fearful that Bennett's weight was not where it needed to be and that we were losing control of being on top of it.  But the GI doctor, in his very usual manner, reassured me Bennett was doing just fine. 

It felt good to have this doctor reassure me, because every time he has done so, I have found he was right. 

I feel so lucky to have found a doctor that we can not only be confident in but who communicates regularly that should something go awry with regards to Bennett's care, he will be there to help us figure it out.  I appreciate this aspect of Bennett's doctor tremendously because...

It hasn't always been this way.

We've been navigating caring for a child with special needs for over two years now (which, let's be honest, feels a bit like 10 years but that's for another blog post...).  The team of doctors we have now are completely different from the ones we started out with originally.  This is because over time and along the way, it has become clear which doctors were not a good fit for the way we ultimately desired to facilitate Bennett's care. 

At one point, alot of my time was just spent fighting our doctors to hear our concerns, to call us back, to come up with effective ways to help Bennett. 

Now, we no longer have to do that.  The doctors we have are advocates of us, as parents, and view us as important to the process as they are.  The doctors we have now are open to our suggestions and offer us an array of new and thoughtful ideas to address Bennett's issues.

I am so very very thankful for the difference a doctor makes.

In as much trouble as Bennett has had over the last two years, it looks like we are starting to emerge from these years with fewer complications than before.  I lay responsibility with our new doctors who have not only helped us put out fires but keep them out.

It occurred to me today how thankful I am, not only for the doctors we have on our team but for the ability to choose doctors.  Being in Central Texas, we live within a two hour driving radius of four excellent children's hospitals!  How amazing is that?!  So, should we come to the conclusion we need to add (or refuse) a member of Bennett's Cystic Fibrosis medical team at any time, its fairly easy to do so because we have access to so many health systems within the area.

Today, as Bennett and I stood under the florescent lights, enclosed by the baby blue walls and sterile medical equipment in the Pediatric doctors office, my heart beamed with thankfulness.  Yes, Bennett received a clean bill of health today.  And yes, his weight ended up being alright.  But my joy came from the fact that, overall, we are just incredibly blessed.

It's not every day that a mom has a conversation in which she learns her child no longer has a rectum.

I kept wondering what the heck the Pediatric Surgeon was talking about during our Post-Op follow up appointment today. She kept saying things like, "he doesn't have a rectum now" and "a missing rectum."   I mean, he has all the correct plumbing down there, hole and all.  How could he be missing his rectum?

So, obviously, I turned to the most reliable source at my fingertips: http://en.wikipedia.org/wiki/Rectum

How in the world did I get through life without realizing the rectum is actually the name of the lowest part of one's intestines??

If Cystic Fibrosis does nothing else, it is giving me a crash course on the human bowel system.

Apparently, Bennett's pre-Christmas surgery took out his rectum, the bottom end of his intestines.  Thankfully, however, his sphincter muscle and continence are in tact...meaning he can and will always be able to go to the bathroom normally.

The only disadvantage of his missing his rectum (the lower part of his bowel) is that it may make his stools more loose and more frequent for the rest of his life.  The rectum is a sort of reservoir for our poop which usually absorbs water from our stools.  Without that, stools tend to be more loose.

This is most important to me right now because potty training is on the horizon.  Potty training is already hard, how much harder will it be with a child who has loose frequent stools?

The Pediatric Surgeon explained that Bennett will have to learn that when his body tells him he needs to "go", he will probably need to go sooner than most of us.  And, she said, we will probably have to be more patient for the potty training process with him.

I asked her if I need to delay potty training with him but she said no.  She seemed to feel very good about my personal philosophy regarding potty training: let the child do it on their own over time. 

I am so glad we have just finished potty training with Oliver.  It was a fairly easy (although lengthy) process that gives me the confidence that it does happen, even with boys, if we're patient enough.  So, we will work towards that with Bennett as well.  He may be the last out of diapers but he will get out of them at some point. 

It's hard to believe the holidays are over. They came and went so quickly!  Here's what we did...

...enjoyed a Christmas party at Oliver's school.


...recovered from surgery.


...spent time with family.


...watched Tornadoes on IMAX!

...discovered what Santa brought!


...ate everything with ketchup ("cuh-cuh") including, but not limited to, Lomein noodles!


...fell in love with jet turbines on the airplane ride home (sweet Oliver is now obsessed!).

It's really nice to be home again, snug in our own beds.  But we really enjoyed our Christmas holidays, with family, all together.

Several friends recently shared words of comfort and peace with me.   These words came shortly after Bennett's pre-Christmas emergency surgery, to which I found them to be very relevant to the rhythm of my own heart.   I thought I would share them here.  Sometimes, sharing words with others is really just sharing it again with myself (which is why I bolded the parts that most stuck out to me):

From Matt, our friend who is also a hospital chaplain: 
"As best as you can, be fully present in each moment and task before moving on to the next or most pressing one. Keep taking everything one piece at a time. I hope strongly alongside of you that God will be revealing a broader understanding of Christmas for you and your families. From the midst of struggles with pain, or the consistency of frustration, we can easily and understandably lose our perspective Breck.  I pray that you continue to fight to see the greater reality of a God who has not abandoned us in the midst of our broken world's realities, but rather a God who actually hurts with us in the midst of their occurring. I'm well aware that words can feel like weak symbols of how you truly feel or of what we want to express to you at times like these. With that said, I want you all to know that you are loved, and that you are not alone in your grief spiritually or communally, even though it can be isolating. I want to prayerfully leave you with one of my favorite blessings, and words that seem especially fitting for where you find yourselves right now:

Amen (which I need to be reminded sometimes means 'may it be so' or 'so be it').  So, remembering that at this moment and in this season: Amen to all of you Breck. Amen.

From Julie, a long time mentor and sweet friend:
A link to the post http://www.itakejoy.com/de-clutteringth/ which offers these words,
"So, as I begin a new year...a very busy time for our family, I resolve to deal with my soul-clutter, so that I may have strength to face each day in peace. I come to the place where I know I will find the help that I need. I come to my Father and ask Him to help me, His child, to show me how to make get rid of the junk that is unnecessary, and to help me clean out and organize my soul.  He speaks to me gently:"


From Lydia, another CF mom:
My heart aches that you all had to go through this during the holidays, but I know Jesus has been with you every step of the way. I know it goes, how if feels like CF isn't really at your front door, and you get adjusted to it all, and then something 'traumatic" happens at the unexpected times.

The boys received alot of nice toys for Christmas.  Santa brought Oliver a Duke jersey, a large United States map puzzle and Police Uniform.  Bennett enjoyed a pretend vacuum and a pretend fireman water hose backpack. 

But one of their favorites were the frog raincoats and umbrellas they received from their great grandmother.  I knew the kids would *love* playing out in the rain.  However, we literally went almost all without rain this summer in Texas.  So, I was more than happy to let them play outside when it rained Christmas Eve.


Here's our little guy just days after having surgery.  It's amazing how wonderful modern medicine is that he would be up and playing like normal just a few days after losing parts of his colon.


Sweet Oliver enjoyed his umbrella most.  He was playing like it was a tornado and having a very good time in the rain.
 

* A list of medications
It's amazing how many times I'm asked to give this information via memory; a list of medications, their dosages and frequency helps simplify this process during admission. I like the phone app CareZone for this.

* Medications
Sometimes, believe it or not, hospitals don't actually have readily available some of the medications you may need; bring nebulizer/breathing treatment supplies, as well.  The hospital may ask you to turn over all your medications to them.  I recommend keeping a bottle of enzymes with you at all times.

* Vest from home, including compressor with its cord and tubing
For the sake of cross-contamination in the hospital; it’s best to use your own vest

* G-tube supplies 
I have learned this the hard way. If the child has a g-tube, bring all supplies. Again, you'd be surprised by what they don't have.

* Bath Towels
Hospital towels are small and rough

* Dish towels and dish soap (to clean dishes, toys or nebulizers)

* Disinfecting wipes
It’s always best to have the ability to sanitize whatever you see fit in the room; including toys you might borrow from the play room.

* Bath mats or other mats for the room
The floor is very hard and very cold.

* Sound machine
Hospital sounds can be loud making one's ability to rest difficult; a sound machine is very helpful!

* Snacks/Small Meals/Soda
There is no guarantee the cafeteria will be open all day/night; sometimes meal time comes and goes and it's difficult to get away

* Cash (including coins for vending machines)

* Warm Clothes, especially socks and bedroom shoes (for parent and for child)
Hospitals are usually cold; for patient, choose buttoned shirts due to IVs

* Flip-flops for the shower

* Toiletries
This ain't a hotel; don't expect them to have much if you forget something

* Laptop/Cell phone and chargers

* Portable DVD player/DVDs, iPad and/or handheld game system

* Toys, stuffed animals, magazines, books, pacifiers

* Blankets and pillows for patient and caregiver
Be prepared to sleep on a side couch; bring your own comfortable bedding

* Sleep mask and ear plugs
Hospital machines have lights and sometimes those lights can be bright, even in a dark room

* Screwdriver

* Command hooks to hang things up

* Tape and Scissors

* Laundry soap 

One of my favorites parts of getting Christmas cards each holiday season is rearranging the pictures on our refrigerator.  A few years back, my mom bought me a giant magnetic collage frame to help organize the pictures on my fridge.

So, every year, I take our Christmas cards and cut down the pictures so that I can fit in the frame as many of our friends as possible.  It makes me so happy taking out the old pictures and replacing them with new photos of our favorite people!

If you've sent us a Christmas card this year, there is a good chance you're sitting on our fridge. :)