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Questions from the Balcony

Tuesday, December 1, 2009

Lately we have had numerous questions from friends and family that we thought we could address most simply in one fell swoop! Hope these answers are helpful!

Is Bennett's pediatrician qualified to treat children with Cystic Fibrosis?

Yes and no. We chose Bennett's pediatrician based on our insurance, her experience with CF and her willingness to take on a CF patient (some doctors don't feel comfortable caring for patients with chronic illness' with which they are unfamiliar). While Dr. Kemper is a general pediatrician and not a CF specialist, she currently cares for another CF child in Waco and does know a great bit about CF. This is only important as Dr. Kemper's role in Bennett's care is to help weigh Bennett regularly (several times a month), monitor his overall health (neurological, physical, emotional, etc) and treat common childhood illness. Dr. Kemper will closely monitor Bennett and if she sees any hint of respiratory illness, she will refer Bennett straight to Cook Children's Hospital under the care of the CF team.

Is Breck still nursing Bennett?
No, shortly after Bennett began on Pregestimil, the doctor and Breck spoke about this issue to evaluate what is best for Bennett. At that time, the doctor felt that Bennett needed his mother's antibodies (found in breastmilk) but that Bennett also needed food he could gain the best nutrition from (since his body struggles to absorb nutrition without assistance). For a while, Bennett received both breastmilk and formula. However, as it became apparent that Bennett's care would be around the clock and that Bennett might not come home from the NICU for months - in addition to the fact that stress was causing Breck's milk supply to lessen - the decision was made to have Bennett be solely on formula. It was a very difficult decision for Breck but nothing about this pregnancy has been ideal - and the issue of whether or not to continue to breastfeed was a simple one given the situation.

Do you think you would have done anything differently had you have found out you had a one in four chance of conceiving a baby with CF? Would you have prepared differently for Bennett's birth?
At the beginning of both of our pregnancies, we were offered a Cystic Fibrosis screening test.  Having no history of this disease, we did not feel it was worth paying the out of pocket costs to have this test (since insurance does not cover it and it's expensive).  So, we had no idea we were even carriers until Bennett's birth.  However, had we known before Bennett was born that he had CF, we may have more closely monitored him in the womb. We may have been considered a "high risk" pregnancy and had the opportunity to be better prepared for his arrival - both physically and emotionally.  We may have begun the journey of understanding what the disease would mean for our lives a bit earlier than we did otherwise.  However, no matter what we might have done to better prepare for Bennett, we would have never terminated the pregnancy. He was a gift from the very beginning - CF or not.


When will Bennett get his "Humpty Dumpty" (aka reanastomosis) surgery?
At this time, we are schedule for a follow up with the surgeon in 3 weeks and it will be determined when Bennett will have his surgery. However, the surgeon has said he wants to see Bennett with at least another pound on him before he goes forward. The only thing keeping Bennett from having his bowels put back together is Bennett's weight. Once he gets stronger, he will be a better candidate for surgery as he will have a greater ability to fight infection after surgery should that be a problem.

Are there any parents you have connected with who have stories similar to Bennett's?
We have spoken with several great CF families recently. Most families have different stories than ours. No one we have spoken with has had a child who had Meconium Peritinitus (perforated colon in the womb)/Meconium Ileus or any of the gastrointestinal issues that Bennett has faced so early in life. In addition, most of the families we have spoken with have children who are 3 years and older. But while some of the details of our experiences are different, many of our CF experiences are similar: the pain of finding out our child's diagnosis, learning how to navigate our child's medical care needs and adjusting to the huge life change that comes with having a child with Cystic Fibrosis.

How do you get clean laundry when you were at Cook Children's hospital? Are there things with an extended hospital stay in a town you don't live in that are challenging?
Yes. We certainly wish we lived in the same town as Bennett's CF Clinic and primary hospital. When we were at the hospital, we were fortunate that there was a free washing machine and dryer on the floor below us. However, it was not in good condition so we washed only what was necessary (we didn't want to ruin any of our best clothes). It was challenging to have to eat out after every meal (as there is no oven or freezer available). However, we did have access to a microwave, ice and vending machines. The nurses would also let us keep food in their refrigerator for 24 hours per item. We had no where to hang up our clothes, but there were drawers underneath the couch/bed. Many times it felt like we were living in a hotel room with limited amenities. What we have learned for next time is to wear clothes that do not need to be ironed or hung, prepare to eat out every meal and plan frequent trips home, if possible. The Ronald McDonald House is not available to us at Cook since we had a private hospital room available to us. The Ronald McDonald House is usually reserved for families who have children in the NICU and PICU (Pediatric Intensive Care Unit).

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