I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, March 15, 2015

A Brother's Prayer


I am not the most diligent journal writer but found this page last night that made me cheer.

August 30, 2011
“Frank had today off for kid appointments. We all went to Orson’s ultrasound this morning and they {Maelee and Charles} were excited and did well. The heartbeat of the baby silenced them. This morning when Charles was praying and I was helping him he asked Heavenly Father to help Maelee be brave and courageous at her appointment and for her throat swab.” Pause on the journal entry….

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Explanation of a CF throat swab:

Throat swabs happen at every quarterly CF appointment and they happen more if the CF person is having to go in more often if they are sick or have just finished a certain antibiotic. It’s your basic hold the tongue down with a wooden stick and then reach way back into their mouth with a long q-tip and roll it around to gather a “sample” which is then tested for any bacteria (MRSA, pseudomonas, strep, e coli, etc, etc, etc) and results of what is found is reported to the doctor and the patient and medicine is prescribed as needed on top of what they are already taking. Eventually with age a CF person can learn to get their doctor a sample without the swab, but for kids it’s really the only way.
Maelee quickly learned to be leery of any person coming close to her face at the doctor’s office. She would go into this fearful rage and clamp both hands over her mouth and curl up into a ball and refuse to let these throat swabs happen with any ease.
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JOURNAL ENTRY CONTINUED………………
“After that whenever the throat swab was mentioned throughout the day by her, she was cheerful and optimistic. When the Doctor finished his exam he said like always, “OK one more thing,” and got the swab out. Maelee visibly gathered her courage and said out loud, “I CAN DO THIS” and then growled at the doctor like he taught her and let him do the swab. When it was over she had a big smile and she and all of us were so proud. She instantly got up and ran over to Charles and said, “Your prayer helped me brother we did it!” and gave him a huge hug. We were all so proud of her and her success.”

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