CF Scare

 

I was lying in bed the other night trying to fall asleep, and for some reason, Tenley's CF scare popped into my mind.  I was instantly very grateful that things turned out the way they did.  I also realized that I had never journaled (blogged) about it.  So here we go...

Tenley has had stomach/digestive problems since the day she was born.  The poor thing has really had a hard time.... especially when she was a baby.  Back in March/April, we couldn't keep anything in her.  She would eat but it would go all the way through.  It really was like she would eat something and an hour later it was out the other end.  She was having 8-10 dirty diapers a day and it was so so runny.  So that's when THIS happened. (refer to April 1 post about RSV)  So I'll pick up from there.

We started all the other testing for what was going on before the RSV hit.  Tenley was tested for Syliac Disease, Chrohns Disease, Cystic Fibrosis, Rotavirus, Kidney Reflux, and a few others I can't remember.  She came back negative for Syliac, Chrohns, and Rotavirus.  We had to go to St. Johns to do the other testing.

I took Tenley to St. Johns for the Kidney Reflux testing, an ultrasound of her kidneys and the Cystic Fibrosis testing.  For the Kidney Relflux they had to cath her, fill her bladder, put some kind of dye in her, and then take x-rays to see if the urine was going back into her kidneys after it had already left them.  Sure enough, it was.  Tenley did NOT like this test!  We had to hold her down and keep her really still during the x-rays.  She does not like to be held down!  We were later told that Tenley had grade 3 kidney reflux and would have to be on antibiotics for 6 months to a year and have to go see a urologist.  The antibiotics were to prevent future infections.  We were told most kids grow out of it but surgery was a possiblity later on down the road.  We were unable to make it to her urologist appointment because we moved out West but hopefully we will be able to find out more soon!

 

After the Reflux testing, it was off for the ultrasound.  Everything looked good there!  Thank goodness!!

 

Then it was time for the test I was most afraid of.....Cystic Fibrosis.  Dave's mom had Cystic Fibrosis and passed away when Dave was in high school.  Dave also has a cousin that suffers from it.  Usually, in order for it to be passed, both sets of parents have to be carriers.  I had been tested when I was pregnant with Tenley and the results were negative....I was not a carrier.  So, we should be safe right?!  Dave had told me that with all Tenley's problems, and because she was so little, it had always been in the back of his mind that she could have it.  This is what scared me the most.

 

To test for Cystic Fibrosis, they do what is called a sweat test.  The sweat test measures the amount of chloride in the sweat.  They start by putting a chemical on the arm that will make the arm sweat. An electrode is then put over that spot. This lets the technician apply a weak electrical current to the area to cause sweating.  The hard part was making Tenley hold still for the next 30 minutes while we waited for her arm to sweat. Then they cleaned the area and collected the sweat.  It was hard waiting for the results to come in.

 

While we were loading our plane from SLC to Elko, NV, Dave had a message from Dr. Calvert herself...not her nurse.  I knew that meant bad news.  The whole flight I worried about what the results were going to be.

 

We landed in Elko, met Dave's PT director there who then took us to the hotel with lunch waiting for us.  As soon as the director left, I called Dr. Calverts office.  They didn't even send me to the nurse, they sent me straight to Dr. Calvert.  I knew for sure this was not good.  Dr. Calvert then dropped the bomb.  She said she was really sorry but the results were not good.  She told me that she scored a 50 on the test.  She explained that everything below 39 was negative, 40-59 CF was possible, and 60+ was positive.  She said that with her test results and our family history, she was pretty sure Tenley had Cystic Fibrosis.  Of course all I could do was cry.  Dr. Calvert told me that the nurse would be getting a hold of me to set up genetic testing in St. Louis or Columbia.  I couldn't believe it.  I tried to tell Dave all that she had said but all I could do was cry.  Dave had 30 minutes before he had leave to meet with the director at the hospital.  He felt really bad that he had to leave me but really all I wanted to do was hug Tenley so it was ok.  A million things were going through my mind.  I was thinking about how we needed to find a job close to a children's hospital, how much Tenley was going to be in and out of the hospital, all the treatments at home, and the worst was that I was probably going to out live her.  It wasn't a good day.

 

Dr. Calvert's nurse was able to get us into the hospital in Columbia.  They have a CF clinic there and they wanted to do the CF sweat test again.  We were told if it was high again, they would do it a third time before they moved onto the genetic testing.  It was a long drive up there with the kids but the news we got was SO worth it!  Tenley did a 2nd sweat test, they gave us passes for free lunch in the cafeteria, and then we were on our way back to Bolivar.  On the way, Dr. Calvert called me and I thought, "Oh no, here we go again".  But this time it was GOOD news!  Tenley scored 13 this time which meant NEGATIVE!  Dr. Calvert wanted to be the one to give me the good news this time.  I just cried and cried again!  This time from relief and gratitude.  Tenley was going to be ok!  I had to say a prayer of gratitude for taking that away from Tenley.  I later learned that my Dad had emailed everyone he knew to fast for Tenley and to put her name in the temple.  Her name was in every temple in Utah, Idaho Falls, Cardston, and Nauvoo.  What a blessing and I know it is because of all the fasting and praying that everything turned out ok.  We are so so blessed and grateful!