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.     

Monday, December 30, 2013

In the beginning

As I type this first entry, my 2 year old sits vibrating in my lap.  He is having his nightly airway clearance treatment, while at the same time taking his nebulized medications.  I contemplate where to begin and realize this is a story that needs to start at the beginning, so I will back things up 2 years and 4 months ago.

After trying to get pregnant for a year and a half, and having three IUI treatments in order to finally become pregnant, I got to hold my sweet little boy on August 23, 2011 after 23 hours of labor.  Like all new parents, I looked at this perfect little thing I created and knew it was all worth it. That very first day, as he lifted his head and looked around the room, I called him my little Monkey, and as the nickname has stuck with him and still suits him perfectly, that is what I'll call him here.

A few days after we brought Monkey home from the hospital I received a phone call.  A nurse told me that several things from his newborn screening had come back elevated.  One was about his thyroid, the other, Cystic Fibrosis.  She explained that it was likely nothing, the sample had been sent to a different city for analysis, and with it being such a hot summer, she was sure the heat had altered the results.  She asked if my husband or I had any family members with Cystic Fibrosis.  When I told her we didn't, she was sure everything would be fine after he was re-tested.  So, believing everything was fine, I took my week old baby to the hospital for more blood work, came home, and continued to live the glorious, sleep deprived, life of a first time new mommy.

The second phone call things started to get scary.  I was told that his thyroid was fine, but Cystic Fibrosis was still coming up as a possible problem.  She said another test would have to be done to know for sure.  This would be a sweat chloride test and couldn't be done until he was 4 weeks old.  She then said that his genetic test showed 2 mutations, and this was not a good sign.

My heart sank.

I didn't even really know what Cystic Fibrosis was, but the idea that something could be wrong with my perfect little Monkey made my blood turn to ice.  It felt like some horrible nightmare that I couldn't wake up from. 

The next few weeks were a haze.  I researched Cystic Fibrosis and prayed to anyone out there who might be listening that it was all a horrible mistake, that my perfect baby would prove to be as healthy as he seemed.  After learning that CF made people's skin salty because they didn't reabsorb the salt from their sweat, I began regularly licking his tiny forehead to see if I could taste any traces of salt.  The weeks leading up to his sweat chloride test were filled with worry and fear.

I will never forget one night shortly before he was 4 weeks old, when there was little on my mind other than the fear of what the sweat chloride test would reveal.  I was up in the middle of the night feeding Monkey and watching tv.  I was watching one of those tattoo shows, Miami Ink, or something similar.  Halfway through the show, it began to tell the story of a man who was getting a memorial tattoo for his son.  His son had had Cystic Fibrosis, and had died at the age of 20.  I clutched my sweet, perfect boy tight to my body and sobbed.  I knew in my gut, that the universe was telling me something.  I held Monkey close, rocked back and forth, and cried quietly for the rest of the night.