Tuesday, December 31, 2013


The day Monkey was officially diagnosed will always be fresh in my memory.  My sister had come from San Fransisco to meet her new nephew and was there the day of his sweat chloride test.  My mom had come from 3 hours away to be with us for the test.  We didn't know for sure if the test would lead to indescribable relief, more testing, or a diagnoses.  I don't think I could have gotten through that day without their comfort and support.

Monkey had 2 tests done at Cincinnati Children's Hospital that day.  For the sweat chloride test, they first stimulated the sweat glands on his tiny arms electronically.  This caused him some discomfort, and of course made him cry, but was not all that terrible.  They then attached a small sweat collecting gadget (that is probably not the scientific term) to each of his arms, wrapped them tightly in plastic, then bundled him up in heavy blankets and sent us into the waiting room.  We then waited about 30 minutes while the gadgets collected the sweat from his arms.  At the end of the waiting time, they unwrapped him, collected the sweat from the gadgets and sent it off to be tested.  The salt content of his sweat is what would be the final determining factor in whether he would lead a "normal" life, or one filled with medication, daily treatments, doctor's visits, hospital stays, worrying about his weight, worrying every time he coughs, etc., etc.

                             This is a picture of the "gadget"  It is collecting sweat in the tiny coiled tube.

While at the hospital, he also had to have another blood test.  However, this time, instead of a heal prick, they actually tapped his tiny little vein and filled several tubes with his blood.  As I held my tiny baby and tried not to watch the blood flowing out of his arm, I remember thinking, "he's so small, how can they take this much of his blood?"

The tests were finally over and we left the hospital to await results.  It was a fairly cold, rainy September day, but we needed to do something to stay occupied and keep our minds off things, so we wandered around a cute little area near my house visiting a few local shops and stopping for a snack.  We finally went back to my house and waited for the phone call.

When the call came, I was terrified to answer the phone.  All I remember is that I was told that Monkey did definitely have CF, no more tests were needed.  The nurse continued to tell me about next steps, but I was not really comprehending anymore.  My eyes filled with tears, I looked at my mom and mouthed, "he has it".

We cried, we hugged each other, we hugged monkey, and then my mom turned to my sister, the librarian, and said "find the best doctors and all the information you can."

We all pulled it together, put our big girl panties on, and began figuring out what needed to be done to keep Monkey as healthy as possible for as long as possible.  We discovered that the CF Clinic at Cincinnati Children's Hospital was the second best in the country.  We discovered the amazing progress that had been made in managing CF over the past couple decades.  We discovered that the average life expectancy of a person with CF had gone from about 6 years old to 36 (still a scary thought when talking about your child).  We discovered the encouraging advances toward a cure (which I truly believe will come in Monkey's lifetime).  Our dispair slowly turned to hope, and we waited to learn more at our first visit to the CF Cinic a few days later.     

No comments:

Post a Comment