The pediatrician calls. My heart sinks. I know as soon as I see his name on the caller id what the call is about. He informs me that the state lab got a high reading for cystic fibrosis. He tells us to go back to the hospital for another blood test. He says, "No big deal. This happens all the time", but I know it's real. Philip has been a fussy baby. We had thought it was just a lactose intolerance. We were able to link every fussy night to a day I had ice cream. So, I avoided it. There are so many reasons an IRTcan be high...traumatic delivery, oxytocin during labor, jaundice. Could it possibly be a false positive?
About a week later
The pediatrician calls. I am not home, but he tells my mom. He immediately calls my cell phone to tell me the second test comes back high. He says I need to go to the CF center at MCV for further testing. I am a bundle of emotions (however I always held it together over the phone). I forget to ask so many questions. I get home and call back to see if there is any possibility that he still may have false positives. His nurse tells me no. I call MCV to set up an appt. They can't see us until next week! I am so scared.
July 17, 2009 - The Sweat Test
We get to MCV where they will do a sweat test. They place us in a room where the nurse washes and dries Philip's arm, then two small gauze pads are placed on the skin. One pad is soaked with a medicine that makes the skin sweat, called pilocarpine. The other pad is soaked with salt water. Electrodes are placed over the gauze pads. The electrodes are hooked up to an instrument that produces a mild electric current, which pushes the medicine into the skin. I am told this feels a lot like when your foot falls asleep.After 10 minutes, the gauze pads and electrodes are removed, and the skin is cleaned with water and then dried. A paper collection pad is taped to the red patch of skin. This pad is covered with plastic to prevent fluid loss. The new pad soaks up the sweat for up to 30 minutes, then it is removed and placed in a sealed bottle. It is then weighed to measure how much sweat the skin produced, and it is checked to find out how much salt chemical (sodium and/or chloride) the sweat contains. The same thing is repeated on the other arm. We will now have to wait until Monday for these results.
July 19, 2009 - The migraines return
Well, I have my first migraine since Philip's birthday. This comes on the weekend that we wait for his CF test results. It is now assumed that the migraines were not a result of pregnancy hormones, but the stress I have been under all along.
July 20, 2009
The test has come back positive. The doctors recommend testing the other two boys. Oh my God, I never thought this could be happening. What will I do if they all three have cystic fibrosis?
July 23, 2009 - Sweat tests for Joshua and Matthew
Today we took Joshua and Matthew in for sweat testing. Matthew is such a little trooper. He made grunting noises during the test but never cried. Joshua cried briefly. The nurses are so great. They gave them both suckers and stickers and let them pick a toy from the prize box.
Two days later we get the results. Both of them are negative!