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Friday, June 23, 2017

Day One - PICC Line

The PICC line is in and we have the first two infusions behind us, thank you, Jesus! The doctor who placed Kiana's line was running late so she didn't get it placed until 3:30 versus 2:00 as was scheduled. The extra wait time did nothing for her nerves, or mine for that matter. The Lyme has affected Kiana in such a way that she is unable to understand things nor can she handle much. I honestly didn't know how she would do. When they called to preregister her, they kindly agreed to make a note on her chart allowing me to be with her during the procedure. 

Downing yet another cup of water. She was supposed to drink 8 oz every hour for 24 hours prior to her line placement. We didn't quite reach that goal!

A sudden case of nerves had Kiana literally shaking. The kind nurse brought her a heated blanket which brought a smile to her sad face.

I had to wear a hair net, face mask, apron and a special top since they were doing x rays. At first they told me that while I can be in the room, I will need to sit on a chair in a corner out of the way. When the doctor came in he motioned me up to the table and said, "Come over here beside Kiana." I was able to hold her hand the whole time, although they placed a chair behind me and a nurse was ready to catch me in case I fainted. Would you believe it, even though I couldn't see anything (my choice) my head started feeling funny and I fought to stay with it. I knew if I fainted Kiana would panic and the whole thing would be over. Thankfully that didn't happen and the procedure went well. 

After the line was placed, we drove to the doctors office where she received her first infusion, and I received brief instructions on how to flush her line. The nurse gave me the supplies and we were free to go home.


Drip, drip, drip....wait, wait,wait!

Our evening was spent calming children who had been imagining the worst and assuring them that everything would be okay. Some couldn't sleep, some cried and some were hyper - big feelings come out in a multitude of ways!

This morning it was back to West Chester nearly an hour away. This time we got to meet people who have been receiving treatment long term. They gave us the inside information that only those going through the actual experience can describe. It was very enlightening to say the least!

Our biggest concerns at the moment are infection and allergic reactions. One boy said he had a reaction three weeks into treatment, and here I was thinking I can breathe easy after the first 24 hours are past! Swimming is not allowed which is hard for Kiana to accept but I am trying to find things she can do while the others cool off in the pool.
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