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Our First Visit to CF Clinic

Saturday, November 28, 2009

So, whatever happened during our visit to the CF Clinic a while back?  We were able to experience CF Clinic for the first time two and a half weeks ago.  However, we haven't had an opportunity to blog about it until now:

Our first CF Clinic appointment started with "new patient" paperwork (as do all first doctor appointments).  Once we were called back for our appointment, we were given a clinic room.  This room is like having a table at a restaurant.  You sit there while everyone comes to you.  One of the greatest benefits of visiting a CF Clinic is the "team" mentality that exists.  Each person in the team has a specific role and facilitates support of one aspect of the CF child's overall health.

First up was the CF Clinic nurse who works with our Pulmonologist, Dr. Dambro.  Denise was our sort of "guide" for the appointment.  She explained how the appointment would go and what to expect.  Typically, the CF Clinic nurse's role is to answers sick patient calls, call in prescription refills and to answer questions about medications.

After that, we met with Carrie, one of two CF Clinic Coordinators.  The CF Clinic Coordinators typically arrange everything we need during a CF Clinic visit.  If we need to meet with any additional doctors while meeting with the CF team, (surgeons, GI docs, etc.), the CF Clinic Coordinators arrange this.  The CF Clinic Coordinators also arrange any medical tests that need to be done while we are at "Clinic". 

Shortly after meeting with Carrie, we met with Staci, the CF Clinic Dietician.  Staci asked us lots of questions about what Bennett typically eats, how much and how often.  Staci has a really important role in the CF Clinic.  She will monitor Bennett's weight gain and growth, advise us on Bennett's diet and help us with overall nutritional issues.  In a few months, as we begin introducing other foods, Staci will evaluate how Bennett's body is adjusting to these foods - whether or not they have the needed calories and whether they are being absorbed.

After the Dietician, we met with Lauren, the CF Clinic Social Worker.  Lauren's role is to provide us information and referrals to community services and to offer advice on patient assistance programs that cover medication costs, medicaid, insurance, etc.  Because the cost of caring for a chronically ill child is very expensive, we imagine we'll be communicating with Lauren quite frequently.

Last but not least, we met with the Pulmonologist and attending physican Dr. Dambro.  She is the one who assesses our situation and considers any medical or diet changes that need to be made.  During this visit, she talked with other members of the team about any concerns and gave us her recommendations.  This is how we ended up in the hospital.  Dr. Dambro believed it was best for Bennett.

We didn't meet with the Respiratory Therapist since Bennett's lungs are very young and very clear.  However, when Bennett is of preschool age, the Respiratory Therapists will administer Bennett's pulmonary function tests.  The Respiratory Therapists also provide educational materials for respiratory therapies and work with us on aquiring necessary medical equipment such as nebulizers, air compressors, CPT vests, oxygen, etc.

We have worked with a few Child Life Specialists in the hospital but we did not meet them at the clinic.  At this time, Child Life Specialists are not necessarily needed.  However, they will be vitally important as Bennett (and even Oliver) grow older.  CF Clinic Child Life Specialists provide developmentally appropriate education about illness, treatment and recovery tools (such as dolls, medical equipment, books, etc.).  They will offer both of the boys therapeutic play opportunities (medical play) to gain insito into Bennett and Oliver's perspectives of Bennett's diagnosis.  The CF Clinic Child Life Specialist will also come in handy when Bennett is of school age as she will provide visits to Bennett's school to explain his illness and treatment to his classmates and easing any transitions he may have from the hospital to the classroom.

Of course, Bennett was admitted to the hospital after his first CF Clinic appointment.  But in the future, we will hopefully have a good appointment and be sent off on our way.

If Bennett stays fairly healthy, we will be asked to return anywhere between 3-6 months.  However, should he get sick, he will be monitored by the CF Clinic team more regularly.

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