Posts Tagged ‘Julia’
Mom and Julia-age two
It was about a year ago that I decided that I wanted to enter the blogging world. I was a bit apprehensive about it because it seems like the internet is just flooded with blogging moms who want to tell you all about the difficulties of motherhood. I solicited the help of my wonderful husband because in our relationship, he’s the one with the technical savvy that I needed to get this all started. I knew that I wanted a .com site and that’s what he gave me and the rest is now blogging bliss.
I want to thank you all for reading! Thank you, thank you, thank you. It means so much to me. My main goal is to bring awareness to cystic fibrosis and I hope that I have done that and I hope to continue doing just that. I wanted to give CF a name and a face and I hope Julia has done that. Please keep reading because it encourages me to keep up the blog…to keep up the fight. The support I have gotten has been simply wonderful. I look forward to battling it out for many more years to come…
So, here is a video of Julia demonstrating an at home clean out. It was filmed by my seven-year-old, Austin. Hope you enjoy catching a glimpse of what living with cystic fibrosis is like.
It’s Sunday…day five of Julia’s first hospital stay. It is certainly wearing on all of us. Julia has a difficult time when Joey or I leave with the older kids to head home for the night. She wants to come too. Last night was my night at home with Olivia and Austin. Julia had a breakdown when we left and it was heartbreaking for me, but it does help me when I get to go home, sleep in my own bed, and take a shower before heading back to be by her side.
Julia has endured three days of medicine level adjustments. Three days of blood draws…over six pokes (probably closer to 10 or 12 if you count the nightmare draw, her initial IV, and PICC). She is very tired of being poked. We hope today the levels are perfect, so we can start being trained on her home health care. It will be tons of work for Joey and I, but we both feel it will be very worth it to just be home.
Julia’s friends have been so wonderful to visit her in the hospital and bring her things to occupy her time. She has been busy watching her favorite shows on TV, coloring, gluing, sticking stickers, stringing beads, reading books, playing with play-doh, putting puzzles together, stamping, and other fun activities. For being in the hospital, the majority of her time has been very positive.
Julia has been well cared for. Her nurses just love her! She is the perfect patient…swallowing all her pills, doing all her treatments, getting hooked up to her IV, all without complaint. Julia calls her IV pole a dog and her IV line is its leash. So, sometimes Julia will take her dog on a walk with her leash throughout the hospital.
We have been so well loved and well fed by our friends and neighbors. I hope I can get the right dishes to the right person when we get home. We are so thankful for you all!
Here is a quick video of Julia getting her PICC line cleaned. It is kinda sad because the nurse made Joey stand back so he didn’t breathe on anything. It has to be very sterile to prevent infection.
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.
Culture results are now in…not shocking by any means…just disappointing. Julia has tested positive for pseudomonas and Wednesday is her big day. We will be heading into Primary Children’s Medical Center on Wednesday at 1:00 to be admitted for a “clean-out.” We have been preparing mentally for this for quite a while now as the trend with Julia’s cultures seems to be pseudomonas positive. I have already described what a clean-out is to my loyal readers, but for any newbies out there, a clean-out consists of a PICC line placement and a very strong dosage of various antibiotics. Julia’s treatments will be bumped up to four times daily, instead of her standard two. The duration of a clean-out is typically two weeks…yes a two week stay in the “hole” as many CFers call it.
My hope is that Julia will only be kept in the hole for three to four days. Why so short? I’m hoping Julia’s CF team feels we’re are competent enough to administer IV antibiotics at home. So, we hope that after a few days, Julia will be sent home with PICC line in place and a rigorous daily schedule of treatments to be accomplished. If not, we’re looking at a two week stay at PCMC. That’s a long time!
I am very numb at this point. Many experienced CF parents are probably rolling their eyes and saying, “Buck up sister!” This is all so new to me, to our family, so it’s a big deal right now. I’m sure years down the road, no one will even know when Julia even goes in because it will just be a part of life, a part of what we do to keep her healthy.
I never imagined in my life that any of my children would have to endure something like CF. I would have never signed up for this voluntarily. We have been born into this CF family, a family that you don’t choose to be a part of, a family that I would adopt out of if I could, but a family that is simply wonderful.
However, CF is gonna wish it didn’t choose our family, because this family has a momma that will give anyone and anything a good arse kickin’ if s/he messes with one of her kids. Look out, because I’m commin’ for you CF, so you’d better hide and take your little buddy, pseudomonas, with you!
Our neighborhood is simply fantastic! They have our backs and I know that we’ll get through this one and many more to follow.
FUCF
Determined,
Julia’s Momma
Julia...she's simply amazing...what can I say?