06 March 2010

Bennett's Sick Visit to the CF Center

We took Bennett to Fort Worth Thursday to get him checked out at the request of Bennett's Pulmonologist.  She is of the opinion that he is still dealing with RSV (it can last 3 weeks) but said she'd be concerned if he was still having these problems in 2 weeks.  She mentioned that she feels that his wheezing my have something to do with his tracheomalacia.  She said his chest X-ray looked fine and she was in agreement with our pediatrician on it.

When we were at the appointment, the nurse asked us if there was anybody else on the team that we'd like to meet with.  We were excited to have the opportunity to ask other experts questions about Bennett's care.

We met with the Dietician and discussed our concerns over his spitting out his enzymes.  She said about 1/2 of all CF babies go through something like this.  We talked about a way Breck had found on the internet to put the enzymes through his g-button.  Both the Dietician and the Pulmonologist had never done this before but were open to it at the urging of Breck and the new information she had found.  We agreed that we would put the enzymes through the button a third of the time but would continue to try to encourage Bennett to continue taking the enzymes by mouth (this is necessary as he will have to do this for the rest of his life - so he might as well get used to it!).

We also met with the Respiratory Therapist (RT).  The RT helped us decide on a nebulizer mask that might better fit him as well as how to go about getting some new percussors (it's always best to have extra in case those things magically disappear along with all the socks we've lost).

We were really happy to get some of the lingering questions answered about fine-tuning our care of Bennett's Cystic Fibrosis.  We greatly appreciate the family atmosphere the clinic provides as well as the wealth of experts available at our fingertips.

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