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New CF Clinic

Friday, July 8, 2011

Well, we've decided to make the plunge. We're changing CF Clinics in August.

We are incredibly fortunate to live in Central Texas and have access to four CF clinics within a 2 hour radius of our home. Most people have access to only one.  We have access to Scott and White in Temple, Dell Children's in Austin, Cook Children's in Fort Worth and Children's Medical Center in Dallas.

Since Bennett was born, we have been followed by the CF Clinic at "Cooks" (the nickname for Cook Children's Hospital). However, at this point, we are ready to make a change.

We have loved our CF Doctor at Cook Children's. She is a phenomenal doctor who has given us only the best of care. However, early on in our fight with CF, we considered we might make a switch from the Fort Worth children's hospital to the Dallas children's hospital since we have family.

One of the things that had us starting out at Cooks was the doctor we were assigned to there regularly drives to Waco to see patients. What a fabulous opportunity for us to have our doctor come to town on a monthly basis!

But as Bennett got sick during his first year, we found ourselves visiting Cooks in Fort Worth more often. And when we were hospitalized for CF related things, we were sent to Cooks. And when we need to have our 3-month big CF follow up appointment, we must drive to Cooks.  So, while it is beneficial that our doctor comes to Waco, the reality is most of our CF care has been (and will be) at Cooks.

We think now is a good time to make the switch to Children's and here's why:
1.) We have family in Dallas.  No family is available in Fort Worth (about an hour away from Dallas considering traffic).
2.) We now know the Dallas area much better now since we lived at the Feeding Clinic in downtown Dallas for a month this summer.
3.) If we are ever hospitalized at Children's Medical (which there is no doubt at some point, we will be), we would stay at the same Ronald McDonald House (which we loved) that Oliver and Brian stayed at during our time at Our Children's House at Baylor.
4.) The CF doctor is the only doctor we still see there anymore.  We used to see a Gastroenterologist at Cooks but we made that change back in January after the GI doctor there seemed unavailable and/or unable to help us kick Bennett's continued issues with C.Diff.
5.) The CF Clinic team at Children's offers a few things the Cooks' CF Clinic team does not.  At Children's, there is a Gastroenterologist on staff at the CF Clinic.  There is also a child psychologist (BIG plus to me as I appreciate the guidance a psychologist can give us on raising a child whose whole life is filled with treatments and medicines).

6.) Brian and I were incredibly impressed by the CF Education Day held at Children's several months ago. 
7.) Children's approach seems closer to what we want:

Yesterday, I took Bennett in to an appointment at Children's Medical Center to see if we might like to make the change.   The doctor I met with, Dr. Copenhaver, spent almost an hour speaking to me.  He was very helpful to me in understanding some minor differences between the clinics and some things Brian and I might should consider if we change.

During this conversation, I gained even more confidence that Children's philosophy of caring for CF is more what we want with Bennett: aggressive and willing to try new things if warranted.  (Our doctor at Cooks is more conservative and wants to prevent being too presumptuous about medications unless studies prove they work.)

I appreciate the academic-focused approach that the Children's team seems to want to take.  I was encouraged by the doctor to bring studies or things I have learned about and would consider using with Bennett.  (I found this more difficult to do with our current doctor.)


Children's and Cooks are both wonderful programs.  Both are CF Foundation accredited and both do an equally good job of caring for children.  But, all things equal, we still feel like having family nearby is enough for us to go forward with this change.  

And, we feel now might be the best time (and easiest time) to make the switch since Bennett is doing relatively well health-wise.


I am so sad we won't have our original CF doctor and team anymore (there are several team members that we just LOVE there).  But I also feel it's for the better when we consider all of the benefits of moving our care to Dallas and to Children's Medical Center.  

A last mention to make about yesterday's appointment is merely that there are some changes that Dr. Copenhaver did suggest that he and his team might make with Bennett's current medication regimen:  

1.) The first one is giving extra salt (he seemed to feel this is not necessary and is more "old school" but said it won't hurt us to give to Bennett).  

2./3.) The second and third changes is the use of Albuterol and Pulmonzyme.  The doctor offered these changes as options if we want to make them.  But he also reassured us that not doing so would not make a huge difference in Bennett's care.  The addition of Albuterol and Pulmonzyme is hoped to make small changes that might affect lung hygiene but since this has not been studied thoroughly, it's more a theory and best guess based on what the medicines are supposed to do.  

Brian and I have not had a chance to really sit down and talk about what we are going to do with regard to adding these meds, but we do have to consider what many CF families must consider on a daily basis: quality of life versus quantity.  Obviously, we want to extend Bennett's life as long as possible.  But, we must also consider that since these medications are not crucial to his health right now, they may inhibit Bennett's ability (as well as our family's ability) to enjoy life.  At less than two, Bennett already spends almost 3 hours sitting at home due to feedings and vest treatments.  We just have to decide whether adding these meds is worth sacrificing more time he could be playing and exploring the world.  We will decide by the time we go for our first official follow up appointment in August.


6 Responses to “New CF Clinic”

  1. reason #7 - you have a friend Ashley in Dallas who is willing and ready to help in ANY WAY! Praying for you sweet friend during a trying time of hard decision making.

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  2. Wow, those are GREAT reasons to change. Pulmoxyme is the best drug! Madeline has been on it since she was 3 months! It seems that your new doctors may be more "open" to trying things- this is why we LOVE Hopkins. They are willing to try new things and stay ahead of the learning curve. I am so excited to hear about the new changes at your clinic. You always do the best for Bennett! Thanks for sharing!

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  3. HI
    My name is Jenna and I came across your site. Bennett is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ, inspirational hero. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com

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  4. hey breck -- just wanted to say that "anonymous" has a point. please don't waste your time explaining why you are doing behavioral therapy. i know it's the predominant method in the united states, and the alternatives are not widely practiced here, despite the research and success in europe (and in places like seattle).
    i did get too emotionally tied up in your story, maybe because of your honest and beautiful writing, maybe because i am also mom to two kids, one a blue-eyed boy with chronic lung disease (now resolved to some degree). but no one likes a busybody, or heaven forbid, the "i know what's best for you" people. it was not my intent to say i know what's best for you, and i don't believe i did. i do know about weans, and that the weans done in seattle are very different and not traumatic for anyone. maybe i crossed the line into nosy annoyance, and for that i apologize.
    i won't be back to your blog, so again, please accept just my best thoughts.
    what anonymous fails to realize perhaps is what you already know -- new docs, new perspectives. one says salt, the other says that's old school. experts experts, with opinions from A to Z. we all find the ones we need, as long we keep looking. we did, and it sounds like you did, too.
    cheers!

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  5. p.s. and your story does touch me very deeply. i admire you and your family, and your willingness to *dialogue* with a non-anonymous :-) person from seattle. i will contact baylor directly, since i'm interested in their success rates and what they define as success (for example, how many kids are tube-free a certain time after finishing the program?), and how much they cost. i will ask the same of kennedy krieger and other behavioral clinics. i'll ask the people i know here and in europe (all ph.d psychologists and ph.d./md) what they consider the theoretical underpinnings of such therapy to be.
    i know, i said i wouldn't be back. but i SO so so appreciate your kindness towards my posts. you have my email, just in case you ever want to continue the conversation.
    all the very best.

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  6. Good Luck with the new hospital!

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