Sunday, July 17, 2005

Trip Number two- Toronto July 15/2005

A second trip to Sick Kids is finally completed. We went caravan style. Two car loads of people who love and adore Annika.
David's twin, Dennis and his fiancee Angie were going to be tested for carrier status, along with David's mom Ann. We should get the results for them in less than a month.
Parker and Annika both had a sweat test done, and Annika had to have her blood done again to check for levels.
I hate seeing her having to be poked and prodded like cattle. I tried telling the blood technician that you can't get blood from her veins in her elbow joint, but she wouldn't listen. She blew the vein in her right arm. Stupid woman. So after several threats from me, a new nurse came in, took the blood from where I told her, and first try, voila!
I have no patience for medical staff that chose not to listen to me.
We met with the dietician, and she wanted Annika put back on the sodium mixture. This should be fun , since she pukes it up. Her sodium, chloride and potassium levels were low,(but her albumin is normal ) so we have to do a repeat blood test in a week to see if they climb.
Also the dietician stated that they normally do not put babies on the beaded enzymes, because they don't gain weight.
Our doctor here in Windsor changed her over to them. The dietician was surprised to see that Annika gained 14 ozs in 2 weeks and grew 1 cm. I asked her how much more weight gain does she want????lol. So she agreed to keep her on the beads. No more sore nipples for me, or diaper rash for her!
The doctors said they were concerned about the low levels of sodium, chloride and potassium, but as long as it stays the same, or climbs, they are fine. Dr. Sweezey said it is normal to loose those elements in the summer.
So we got to come home.
They didn't have the sweat results yet, or our genetic coding done . It was a stressful ride home.
This last appointment was long and emotionally draining. Everytime we go to Sick Kids , we wonder if we are coming home. The expenses are adding up, and the stress level is high.
We got home about 11:00 PM. and I put Parker to bed , Dave was listening to the phone messages.
Dr. April Price had called saying Parkers sodium level on the sweat test was below 10, a definite negative for CF, but Annika's levels had climbed to 82, a definite positive. I stood outside Parkers bedroom door, sobbing like a child.
I cried for the relief I felt , knowing now that Parker was negative ( a result I already knew in my heart ) , I cried for Annika finally being confirmed positive , and I cried for our future and the unknown. I feel so defeated, and so exhausted.
And the dance goes on..............