One Tough Day
Written by Janna
Friday, 10 September 2010 02:17
Yesterday was very difficult for Julia…even more difficult than her first day. We had a great morning! Julia’s little friend and his mom and dad came to see Julia and bring her something special. It really helps for Julia to see familiar faces here in the hospital. It really brightens her day!
The afternoon wasn’t so exciting for little Julia. Julia’s levels of medication are being tested, so that means blood draws. Being that this is Julia’s first clean-out, I was naive and assumed that once the PICC line was in, all blood draws could be taken from that. Wrong. Since the medication is being administered through the PICC, if the blood drawn from that same line was tested, the medication levels would read abnormally high. As a result, the blood must be drawn from a different part of the body. This all translates into more pokes for Julia.
She has been such a trooper with all of her pokes thus far, but yesterday she experienced a nightmare blood draw. She was getting poked in the fold of her tiny arm and things went really bad. The phlebotomist wasn’t getting it and had to dig around in her arm for a while. I had to hold Julia down while she was tortured. Julia was screaming, sweating, hysterical…all of the above. It was very heartbreaking to watch.
The rest of the the day, Julia was afraid of anyone who walked in her room. She was hiding from the nurse and when it came time for her evening treatment, she threw a huge fit, kicking, screaming, crying. It was awful to watch her loose control. She has been such a brave girl, but as events have become more unpredictable for her, her confidence is fleeting, and she is fighting to gain control of her environment. This is very difficult for me.
Much to our dismay, the medication levels aren’t right just yet, so that means two more blood draws for Julia today. We hope for more positive experiences for her.
We hope to be coming home after this weekend, probably Monday. That means that we’ll be administering IV antibiotics and carrying out four treatments each day. We feel that Julia will be more comfortable in her home environment. We feel our other children will be more relaxed with everyone under the same roof. We have had such wonderful support from our friends, family, and neighbors and couldn’t have pulled off these past few days without them. Our hearts are very touched. We are so blessed to have you all surround us at this time.
The Child Life Specialist visits Julia to attempt to repair emotional damage caused by her nightmare poke. Julia draws blood from her doll Darla.
Julia's PICC line site was cleaned yesterday, which was also hard for her. A PICC line site is typically cleaned 24 hours after the PICC has been placed to prevent infection.
This is Julia's famous first PICC. The hardest part about cleaning it is getting all the tape off. I think it kinda freaked her out to see exactly where the tube went into her arm. Such a brave little girl.
My heart is breaking for you both. Having a PICC sucks, and getting it cleaned is very painful for an adult, never mind a 3yr old. Julia continues to inspire me everyday. I wish that I knew her in person, rather than through this blog. Janna, thank you for writing this. I am continuing to pray for you and your family. If there is anything we can do from Atlanta, please let me know. All my love for you all, Steph.
Oh Janna, I just want to cry right along with sweet little Julia. I am SO SORRY! What a nightmare! I think what they did with the doll is such a good idea! I hope the Dr’s can get the right medication right soon. We had one Dr. that was a big disappointment for several reason’s, I think her name was *******. I hope Julia can go home on Monday! I know my little Hannah isn’t a familiar face, but I was thinking maybe since they’re so close in age that Hannah and I could come visit tomorrow afternoon. Do you think Julia would like that? I know you’ll probably get a lot of visitors on Saturday so if we’ll overwhelm you we understand and won’t come. But if you think Julia would like to meet Hannah let us know if tomorrow around 3pm would be o.k to come visit.
I’m so sorry about all the pokes, we are praying for you all!
I’m so sorry for Julia and you as well! There’s nothing comparable to watching your child suffer and not be able to do anything about it!
It does help so much to have your family and friends calling, dropping by and bringing gifts. You and Joey are always great when my kids are at PCMC. Now its your turn for the support!
I have to say that your photo history and blog is an amazing way to put a face to CF. Julia’s face.
Hang in there! This too shall pass though it feels like it is going on forever. Hopefully you have no more bad blood draws. Its amazing the difference between a good phlebotomist and a bad one isn’t it?
Say hi to Julia for us, the poor thing. She’s allowed a few fits and tears through it all!
We hope to visit Sunday.
we pray for you all.
love
Shauna