27 August 2015

Signs of love

A while back, I wrote about Bennett's sinus surgery nurse and how she had surprised us by having already known about us because my friend Kayla had shared our story weeks before.  Kayla is a champion for Bennett so I wanted to share more about how her efforts this year impacted us.

If you like HGTV's Fixer Upper show, then you'll love the artwork that Kayla creates.  She is a wife/mom of two, a talented crafter and owner of Linen and Lumber.  Last year, Kayla auctioned off two beautiful items in order to raise money for a cure for Bennett.  This year, she raffled off two more:

These pieces are *beautiful* and we knew they could be best appreciated in person.  So, we asked Emily, owner of Waco's hottest vintage and antique store Junque in the Trunk, if she would be willing to allow us to place the signs in her store for a few days.

Emily, who has such a big heart for others, did not hesitate at all.  She was more than willing to help us do anything to raise money for a cure for Bennett. The signs stayed in the store for several weeks.

However, tragically, during the time period when Kayla's signs were being displayed at Junque in the Trunk, there was a sudden death of one of Emily's wholesalers.

A local man who had been hand-making some of the store's most popular light fixtures had suddenly died.  Emily was heartbroken, both to lose Randy but also for his wife who was now a widow.

In an effort to help this Randy's widow, whom she cared about (I told you Emily has a big heart), Emily decided to raffle off the man's last light fixture left in the store and give that money to the widow.  The light fixture raised several hundred dollars.

But when Emily offered the money to the woman who had lost her husband, the woman, who had, at this point, heard Bennett's story, asked Emily if she would turn around and donate it to Bennett's Brigade.

I was a puddle of tears when I heard this...this sweet woman having just loss of the love her life had turned around and given that money to help give our little guy be able to live. 

It wasn't until I reached out on social media to thank this woman, whose name is Tammy, and asked if I could share her story on the blog that I realized I knew her.  Tammy was once a nurse at Bennett's pediatrician's office.  

When Bennett was a baby, we were in the Pediatrician's office ALL THE TIME.  Tammy was one of the sweet nurses who would regularly say hello and smile in the hallways, offer to get the kids stickers and suckers after their appointments and just make the experience of taking my special needs child to the doctor a little less painful.  

But realizing I knew her made Randy's death even more difficult.  Tammy is so kind and caring.  Losing your husband is so unfair.

At a loss for words, I told Tammy I wished very much that I could take away her pain.  Tammy's reply to me was, "I wish you could bring him back also, but I do know that God had bigger and better plans for him and I."  

Tammy explained why she donated to the CF Foundation in memory of Randy, "[Bennett's] story touched my heart and I know it would have my husband's also."

I want to thank Tammy again for her donation and for honoring her husband in this way.  We recognize what a gift this is and will forever remember Randy.

Kayla's raffle ended up bringing in about $1000.  The winner of this sign is Haley Fuller.

The winner of the easel is Christi Cane.   We are thankful to EVERYONE who participated in this raffle for their donation to the Cystic Fibrosis Foundation in honor of Bennett.  

Kayla explained to me personally several times this year how she much she just wants to use her talents to bless others and how her greatest hope is that God would work through them.  Looking back over the last few months, I cannot deny that God has done just that, Kayla.  Thank you for making us the beneficiary of your hard work and care.

Although we have not yet found a cure for Bennett, we certainly are not short on blessings.

With greatest sincerity, THANK YOU!!

17 August 2015

Post-Op Appt Bennett

Bennett has recovered very nicely from the sinus surgery he had a few weeks ago.  Last week, I took him back to the ENT for a post-op follow-up.

Even after the surgery, Bennett continued to have less-painful but still persistent headaches.  The ENT decided to prevent any further infection by prescribing him an antibiotic. He hasn't complained of headaches since.  It feels SO good to know his sinuses are clear for now.  We have noticed his appetite has increased and he's actually been more interested in food.  We imagine it's because he can smell and taste again.

What is really wonderful is the other night, while playing in a friend's pool, I asked Bennett to put his head underwater when he swam to me.  He tried it but complained he was getting water up his nose. I showed him how to blow water out of his nose.  He struggled to feel confident he could do it.  I reassured him he could.  We took some deep practice breaths in and out of his nose - and then he tried blowing water out of his nose while swimming.  He was thrilled when he realized he actually could do it - his nose wasn't stopped up anymore!  It was a pretty neat moment to watch his face while knowing what he had experience before surgery versus afterward.  Sweet little guy was so proud of himself for being able to do something so big and important - being brave with putting his head underwater and pushing air out of his nose! :)

However, one sad moment for us with regard to surgery is the addition to yet another therapy to Bennett's already overwhelming treatment schedule.  We have now had to start sinus rinses.

A "sinus rinse" is the use of a specially-designed squeeze bottle to push salt water up one nostril causing it to naturally run out the other to loosen up mucus and wash out bacteria.   If it sounds freaky, believe me, it is.  But, what I found from doing it myself is that it's fairly natural once you get used to it.

Try telling that to a 5 year old.

I begged Brian to do it with me first.  I felt like that, in order to better understand the feelings Bennett would have, we, as his parents, needed to bravely try it first.  (This took Brian a bit to get on board.) It felt weird and a little uncomfortable but ended up feeling like the feeling after you've had a good cry and blown your nose or after you've done flips in the swimming pool all day - where your nose just feels cleaned out.  It kinda feels cleansing.

But again, try telling that to a 5 year old.

We told Bennett what we had done and what we needed him to try too.  Bennett knew he couldn't resist for too long.  So, he hesitantly allowed Brian to give him a sinus rinse on one nostril.  Despite that it is fairly harmless, his reaction was that of distraught.  So, we knew we weren't going to get him to do the other nostril on the first night.

Thankfully, his bravery came out after a night's rest.  Tonight, he agreed to do it in both nostrils.  We are working up to both nostrils in the morning and the night.  (That's a lot of gummy candy being given out in our house - often his reward for things he hates.)

Nonetheless, through his tears, right before he had to try the sinus rinses for the first time, Bennett said in resignation: "This is why I don't like having Cystic Fibrosis."

We get it.  Not only is it mentally taxing to have to add one more thing to your list of things you have to beg your child to do every morning and every evening, sinus rises adds to our daily work, as well, as his caregivers.

The sinus rinse bottle has to be washed after every use and the distilled water has to be mixed with saline packets to prepare for every use.

...add that to the daily washing and sterilizing of his nebulizer treatments and the twice daily making of his feeding bag and the multiple times daily giving out of pills and the twice daily placing of Bennett on the Vest for 20 minute increments and monthly reordering of meds and it's easy to see why one.more.therapy can be overwhelming.

Raising Bennett doesn't just include giving out rewards for chores like brush your teeth, pick up your toys, make your bed but also do your Vest, take your meds and do your sinus rinses.  It's wearying just to do the first three, much less the second three on top of that.

We are working to accept this new treatment regimen change.  As hard as it is now, we know it only gets worse - more treatments are to come, more meds to be given, more time on the Vest to be spent. But Brian and I often quietly look at each other in these moments and share with each other Bennett's sentiment:

This is why we don't like Cystic Fibrosis.

14 August 2015

First Day of School 2015

Today is the day!  School is back in session for our family!

First Year in 2nd Grade

This year, Bennett and Avonlea are continuing at their school but Oliver has moved to a school that focuses on the Montessori method of education (hence the missing uniform).   We think he will do better in a slower-paced, more flexible classroom that allows for more self-directed learning. Oliver is sad to leave his school and friends but is looking forward to a new way of learning. Apparently, they are going to be studying about galaxies this year so, naturally, Oliver is stoked!

First Day in Kindergarten

It was a little hard for Bennett to have to go to his school without Oliver this year but it helped that most of his best friends from last year are back this year.  It's hard to believe our baby Bennett is in kindergarten.  He has his first loose tooth and is on the cusp of reading.  I feel like in some many ways life with Bennett was very slow those first few years when we had so many speedbumps to get through but now life with Bennett is going  at a super fast speed.  

First Day in the 2 Year Old Class

This one got me.  I cried when I dropped her off at school today.  She was so excited about school.  She requested to walk herself in while holding her own lunch box (which she referred to as he "backpack").  It was so very sweet.  She was upset when I left her, which made it hard.  But her teacher has sent me pictures throughout the morning, which has been great. I know she will enjoy playing and learning new things at school a few days a week.

Here's to a great school year,

04 August 2015

Coming Home and an Update on Bennett

It's hard to believe it's taken me until Tuesday to post about our Thursday's homecoming from the hospital and subsequent recovery!  The first day or two was just catching up on sleep and connecting with the little people who had missed me when I was gone.  But the other few days have been trying to slow down enough to get a chance to post. Alas, here is an update on the rest of our hospitalization and how things have been since we got home.

Although Bennett was able to comfortably sleep at the hospital Wednesday night, I was able to get only 3 hours of sleep that night.  

It's SO hard sleeping in the hospital.  The hallway lights beam brightly through the door window at all hours of the night.  The machines make beeping noises and regularly call out for attention.  Vital signs have to be checked.  Nurses enter and exit the room as they please, inevitably making noises when they do.  And that plastic lined couch that makes down in to a smaller-than-twin-sized bed could be no less comfortable.  On top of that, I struggled to sleep because I was anxious that Bennett would wake up suddenly afraid of where he was...and because I knew that almost as early as the sunset, the nurses would be changing shifts and doctors and residents would be making their rounds.

Sure enough, around 6am, we had people in our room saying good morning and checking on Bennett's condition.  Thankfully, Bennett slept well at the hospital and woke up the next morning in a great mood.  I was actually quietly whispering to the ENT resident at the edge of his bed when Bennett popped up awake from his sleep, smiled and said, "hello!"  It was at that point that I knew he was going to be just fine.

Recovery in the hospital went well.  The thing that bothered Bennett the most was having an IV in his foot and an oximeter on his toe.  However, he did a great job tolerating it.

Of course, we still had to do treatments while in the hospital.  He never gets a break from breathing treatments.

We got word that we were going to get discharged later that morning but it took a while to get our papers. This is because the entire Baylor-Scott and White hospital systemwide EPIC electronic charting server went out in the middle of the night and couldn't seem to come back online.  Not only was our hospital affected but so were all of Baylor-Scott and White hospitals in all of Dallas and the surrounding areas.

It was like being in the 1980's again. Nobody had access to the electronic medical records and no ability to chart electronically.  It was all about that paper and pen at this point.  Since this had never happened to the hospital before, it was funny to see how much clinicians rely on technology in the health care system these days.  Everyone was very professional and calm about it.  But it was obvious that knocked everybody for a loop.

Unable to use the electronic system, our discharge papers had to be handwritten by our doctor.  But then, unable to be sent electronically to another part of the hospital, the handwritten discharge papers actually got stuck in the tube on their way back down.  So, that took some time to get them out.

Thankfully, Bennett was very patient while we waited to be discharged.  He just played with his Star War toys.

Bennett fell asleep on the way home from the hospital.  I was super sleepy on the way home, as well.  So, as soon as I came home, I headed for a few hour-long nap.  Thanks to Brian and our sweet babysitter Peyton, who donated her time to me, for taking care of the kids once we were home.

So, how is Bennett doing now?  He is doing really well.  Recovery from sinus surgery has been great.

The first 24-48 hours brought some bloody noses.  In fact, a bloody nose is our biggest risk for the next two weeks.  But, for the most part, it hasn't been a problem.  Bennett has complained of very little pain since we left the hospital.  

Bennett said he still has headaches but says they are milder than the ones before.  I will ask the doctor about this if they have not resolved in the next two weeks.  Bennett doesn't report breathing better but I'm not sure if it's because he still has dried blood and inflammation in his nose or if he just can't tell a difference.

The cultures from Bennett's sinus surgery have come back.  Fortunately, Bennett's cultures found he had antibiotic-sensitive staphylococcus aureus (MSSA) in his sinuses, the same thing he has in his lungs - a bacteria that has likely colonized in his system at this point.  Bennett's ENT doc and CF doc have both agreed not to treat this infection at this time.  "Staph" as it is often called is common in CF lungs and sinus cavities.  Although the bacteria could be treated, the doctors want to very careful not to overuse antibiotics that Bennett will likely need later.  Antibiotics are critical to keeping Bennett well so overuse, even if necessary, will cause the bacteria to eventually become antibiotic-resistant.  Antibiotic-resistant infections, such as MRSA, can be very harmful.  So, for now, we are thankful for this milder bacteria and pray it is the only one he colonizes any time soon.

We will go for a post-op appointment in a few weeks but, overall, we had the best outcome we could hope for - a necessary surgery completed successfully and test results that show he has no serious infections yet.

CF is a time bomb.  It's only a matter of time before we are dealing with more serious things.  But every moment that we are dealing with less-serious things is a gift!  

Brian and I are so thankful that Bennett has now had the surgery, is no longer in pain and no longer has thick mucus clogging his sinus cavities.  We are ever aware that our blessings are plentiful and we are thanking God for every one!