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Annual CF Clinic Appointment

Thursday, August 30, 2012

Like most of those with Cystic Fibrosis, we visit the CF doctor every three months.  However, the big doozy of appointments that we anticipate each year is Bennett's Annual CF appointment.  This appointment includes many of the same things he does at every appointment (seeing the doctor, getting a throat culture, being weighed) but it also includes a chest x-ray and blood work.  I had anticipated this appointment to be a bit more stressful for Bennett due to all that he would have to undergo.  But he handled it beautifully and this may have been the very best CF appointment we've ever had!

There are several reasons why today went so well.  But one of the reasons today went so well was who Bennett had by his side:

Big brother Oliver was such a help today!  On our way to Dallas, Brian and I asked Oliver if he would be willing to assist us with very big and important job at Bennett's appointment.  Oliver's eyes got big and wide as we asked him if thought he could be very brave and demonstrate to Bennett how to do things at the clinic so Bennett would not be scared.  Oliver was pleased as punch to have a role to play today and became Bennett biggest cheerleader.  Not only was it adorable to watch Oliver help his little brother, Oliver was actually VERY helpful.  Oliver confidently showed Bennett how to step up on the scale, stand up straight to have his height measured, to smile and say "cheese" for the x-ray machine and to be patient while the doctor looked in his ears.  Bennett picked up on Oliver's confidence and wasn't afraid most of the time!


Another reason why today's appointment was success was Daddy was there.  Brian came along during this appointment as I knew it would be a long day for all of us.  We are so fortunate to have a Daddy with a flexible school schedule who can come be with us on important days like this one.  Having Brian involved with Bennett's care takes a lot of the burden of his care off my shoulders.  It's nice when Brian can be a part of these appointments so he can talk with the doctor and better understand Bennett's disease.


But the biggest reason today's appointment was a success was Mr. Bennett, himself.  What a champ he was today!  He was SO brave and complied so well with the poking and prodding from doctors and nurses.  I was delighted to see how much easier CF appointments have become now that Bennett is almost three.  Today, Bennett seemed less fearful than ever before and was so excited to show the doctors and nurses how "big" and "strong" he is!


Of course, there were things that really stressed him out.  Bennett did not like the throat culture or blood work we had to take from him (we were forced to hold him down during those times).  But other times, like when Bennett was getting his vitals, I found Bennett could be calmed down and taught to endure.


I learned a trick today by accident.  After I took this picture, I put my camera down and told him to listen ever so carefully for the series of beeps from the machine that would let off to indicate we were done.  I loved seeing his face as he intently tried to listen to the beep of the machine.  He was so excited when he heard the beep and could instruct the nurse to promptly released the blood pressure cuff from his leg.  Today was rewarding - to see that, with enough distraction and encouragement, Bennett can now patiently undergo these tests without much fuss.   After more than two dozen CF clinic appointments and crying at each one, it feels so good to see these tests get easier on him...which makes them tremendously easier on me!


While in the room and waiting for Dr. C to visit, Daddy took some time to explain to the boys about lungs and how Cystic Fibrosis affects Bennett's lungs.  Both boys really loved hearing Daddy's explanations.


At first, I hadn't really noticed how focused the boys were on Brian's explanations.  But they stood looking at that pink poster for a good long time.  I think both little boys are trying to understand why we talk about "lungs", "mucus" and "CF" so much.


I am so glad I caught this moment with my camera as it is probably Bennett's very first moment of learning about his disease.  He kept asking questions like, "why my wungs, Daddy?" and "what happened?"  But it was when Dr. C started listening to Bennett's lungs and Bennett so patiently inhaled and exhaled that I noticed that Bennett had grasped some part of why we were in the doctor's office in the first place: breathing is important, our lungs keep us healthy and the doctor is going to make sure our lungs are working well.


One of my favorite moments today were the few minutes Dr. C took out of her time to play "Superman" and "Buzz Lightyear" with Bennett.  He was happily playing when she first walked in.  Noticing that he was engaged in play, she came in, sat down and began to play with him.  He loved it.  And I loved that CF doctor is so thoughtful and loving to her patients.


Besides two happy children, one helpful husband and an overall beautiful day, there are more reasons why today's clinic appointment went to well:  Bennett's weight went up, bringing him to the 38th percentile (the highest he's ever been while being followed by the Children's CF staff).  Dr. C was very pleased and had no complaints about his weight.  Everyone is particularly delighted as he has been in school for quite some time now.  This tells us that he is eating well at school where he must eat independently!  (Hard to believe only a year and a half ago we were at a feeding clinic for a child who wouldn't eat!)

   
Our last bit of good news came from Bennett's chest Xray.   The left X-ray is Bennett's chest x-ray from last year.  The right xray is from today.  It turns out that there is a tiny bit of change between the two but not much.  Brian and I are learning, appointment by appointment, how to read chest xrays.  From what Dr. C explained today, she is looking for tiny mucus plugs in his airways and clear/fuzzy lines around his organs near his chest.

Clear lines around the organs demonstrate less lung damage.  Fuzzy lines show some lung damage.  It was hard for Dr. C to find any mucus plugs but she did notice a slight change from a clear line to a fuzzy line around Bennett's heart in the middle of Bennett's right lung.  So, this could indicate some mild airway damage.  Dr. C recommended that we try some hand percussion therapy (aka beating our child's chest) around the middle of his left lobe to see if we can unplug the area filled with mucus.  But, she also wasn't too worried.



Dr. C said that Bennett's lungs, for a child his age with Cystic Fibrosis look "pretty darn good!"  So, while we are going to increase some chest physiotherapy to see if we can help his middle left lobe, we are so happy to know our son's lungs are looking GOOD for now!   It's hard to accept seeing any change in his lungs in the course of only one year.  But we are so thankful it is so little change.

We don't take good news for granted.  In fact, one of the specialists who later stopped by our room to check in on us said, "I know you probably don't need me today....but we don't get good news in this clinic all that often...so when we do, I want to stop by.  So excited Bennett is doing so well!"

SO ARE WE!!  So thankful for thoughtful doctors, clear Xrays, helpful brothers, involved fathers and brave little boys!

10 Responses to “Annual CF Clinic Appointment”

  1. And another reason the visit was a success was a super prepared Mommy. I'm sure you were armed with an arsenal of activities and things to keep the boys occupied. Yeah for a great appointment!

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  2. Breck, incredible post all around! From the way you captured the appointment in photos to your well-written descriptions to your gratitude and perspective to the encouraging news about Bennett's health, I continue to be touched by your journey.

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    1. Mary, those are incredibly thoughtful words that I have appreciated all day. Thank you for sharing you are touched by our journey. That means a lot to me. :)

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  3. Brought tears to my eyes, can't help but admit.

    -Margaret's brother Greg

    (I work with a lot of kids with CF who aren't blessed with as involved and as caring mothers, brothers, and fathers. It's beautiful to hear about so often from Meg.)

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  4. Greg, your comment really moved Brian and me tonight. Thank you for your sweet thoughts (and tears) for our boy.

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  5. Hi Bennett
    My name is Jenna. You are a brave courageous fighter, You are a special miracle from god, a gift from above, earthly angel, a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.

    Oliver you are an amazing big brother and a great big help! U Rock Oliver!

    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior
    http://www.miraclechamp.webs.com

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  6. Thanks for your poem and kind words, Smilen Champ. I will pass them on to Bennett and Oliver. :)

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  7. I think you forgot to mention that YOU were there to keep the entire family organized, occupied, and photographed! You are so blessed to have a strong family who can all rally around Bennett, recognizing their own strengths in the process. Congrats Momma!

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    1. Lol - Thanks sweet Jenny. :) You're so sweet. I agree with you, though, I am very blessed to have such a strong family to rally around Bennett. I count you to be a blessing, as well. :)

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