Posts Tagged ‘hospital’
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.
Today is a day of firsts for Julia. It was her first day of three-year-old preschool and her first trip to the hospital for a clean-out. Let’s start with preschool…
Julia goes on safari on her first day of preschool!
Oakwood here I come!
Another first…Julia’s first clean-out. Julia is so brave. She has been handling things like a pro! Gotta love this girl…
Heading into PCMC for Julia's first clean-out
Julia waits for IV to be placed. She was so brave. She only cried after it was done...and she did call it, "Stupid!" The nurses could only agree.
Waiting for the PICC to be placed. Julia was starving...asking over and over for chicken strips and chocolate milk.
Julia now has a PICC, IV is now out and this girl got to eat some homemade chicken nuggets and chocolate milk!
I think the hardest times for me were when Julia got the IV placed and when I had to leave the room for the team to place her PICC. I teared up with her when she cried after her IV. She was so brave, but I could tell how scared she really was. The funny part was when Julia got her pre-PICC drugs. She had been complaining for over an hour about how hungry she was and how she wanted to go home, but the second the drugs hit her little body, she started laughing, just cracking up. I couldn’t help but laugh right along with her. I have video of a little bit of her laughing and her “happy” time. Ahhh, what great drugs they have here. Makes getting a PICC quite the happy, laughing experience. She shouldn’t remember any of the PICC line going in as they also gave her a “forgetting” drug along with the happy, relaxing drugs.
Here is a video of Julia getting her pre-PICC sedation.
Please visit if you can. Julia will surely be very happy to see any familiar faces. We are in 3047 and can have visitors ’til 10 PM, but come before 9 as we will need to sleep. We start the treatment schedule tomorrow and it should include four treatments a day along with her intravenous antibiotics.
We truly feel of your love and support at this time as it has picked us up and carried us along. We couldn’t survive this without such loving, generous support. It brings tears to my eyes thinking about all of our family and friends who are truly making this difficult time just a bit more pleasant. We love you all and are so blessed to have you in our lives!
Pseudomonas...or pickles as Julia would say.
I have been struggling with what to tell Julia about her clean-out. I have always told my children when they are going to the doctor…when they should be expecting a shot…what will be happening to them, as I believe that it relieves much of the anxiety that comes with doctors, nurses, and hospitals. If a shot is going to be happening, they know it and expect it. If a “throat tickle” is in store, Julia knows it. So how do you explain to a three-year-old what will be happening to them with a clean-out?
This is kinda how it went:
“Julia, can I tell you something serious?”
“Yeah.”
“Julia, you and mommy have to pack a bag and go up to the hospital to spend a few nights. The doctor will give you some special medicine that will make you fall asleep, and when you wake up, you’ll have a little tube in your arm. The doctor will be putting some special medicine in your arm. The medicine will go up your arm to your lungs to kill the yucky “pickles” that have been growing in your lungs.”
Julia just nodded a lot and then simply said, “I don’t want a poke.”
I reminded her of all of the wonderful things about PCMC, like the cafeteria, stickers, special treats and prizes, and best of all, Nutty Guys jumbo bag of gumballs!
This was the best I could come up with. Tomorrow is the big day! If you would like to come and visit Julia at the hospital…please, please do! She would love to see any and all…I’ll let you know the visiting rules as soon as I learn them. Wish us luck!
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?