Category: PICC line
Yesterday morning, the home health nurse came over and pulled Julia’s PICC line. The first thing Julia wanted to do was go swimming! I think we’ll try and get out to the pool today since the kids don’t have school. Julia’s first clean-out is finally finished! All I can say is…Julia is amazing! I think she actually grew a little attached to her PICC. It was like an old friend after being with her for two weeks straight. Julia is very happy to be back to her regular treatment schedule…only two times each day.
This is Julia's actual PICC.
So glad to have it finally out!
I’d like to reflect a bit on this first time experience if I could. What an amazing two weeks this has been. We discovered that our family is planted in a truly amazing neighborhood. Not only that, but we are a part of a fantastic CF community. Julia has been given the best possible care. Our family has received support from dozens and dozens of people in the form of phone calls, messages, cards, gifts, treats, meals, childcare, etc. One dear friend came over twice to hook up Julia’s IV meds when Joey and I were away…quite the bonus to have a friend that is also a nurse. Words cannot express how thankful we are to have received such fantastic support. It really made these past two weeks more manageable.
I learned that it is very hard to have a child in the hospital, no matter how sick they are. It’s just plain hard. Being able to finish Julia’s clean-out at home, as challenging as it was, was a true blessing. Julia was happier, Olivia and Austin were happier, we all were much more content. I felt that Julia got more exercise, which was very good for her lungs. We all got more sleep. Julia slept better in her own bed. We were able to live our lives…with several interruptions a day…but we could do all the things we always do. Julia could go to playgroup, preschool, dance, the store, the park. How great is that! She only missed one day of preschool. Having Julia home was a benefit for the entire family.
I learned that you can do an IV med anytime, any place, no matter how many weird looks you get.
Julia having her IV med at back-to-school night.
I also learned that Julia can't be without her dance clothes. She has worn them everyday since she got out of the hospital.
I learned that two flushes along with one IV med will make Julia pee her bed at night. Next time, I’ll buy some pull-ups for the occasion.
I learned that IV antibiotics won’t give Julia c. diff. How cool it that? Julia was blasted with some pretty hefty antibiotics and no c. diff. It didn’t even touch her stomach, unlike our experience with the oral type.
I learned that coban is pretty cool stuff. It’s like a stretchy wrap that is also adhesive. The home health nurse also told us to cut the toe out of a sock, slip it over Julia’s PICC and then wrap it with coban. This really helped the irritation on Julia’s arm caused by the coban. Coban comes in all kinds of colors and designs and made Julia’s PICC more fun!
Coban wrap...pretty cool stuff!
I learned that you really need to watch and pay attention. Sometimes a mistake can happen and you need to speak up if you catch it. I don’t know how health care workers do it. It’s a profession where mistakes aren’t allowed, but as humans, we all make mistakes. Always be paying attention, ask questions, and speak up.
I also learned patience. I guess this is something that I’m always learning.
So, Julia will be tested in two weeks for pseudomonas. Our hope is that this clean-out eradicated it. There is no guarantee that comes with this. Regardless of the outcome, we felt that it was worth the shot. We’ll keep fighting, come what may.
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.
This post comes a few day late, but we are home now! Things haven’t slowed down since coming home, so I am finding that I have time to do very little and my blog has taken a back seat to more pressing things. We came home late Monday afternoon and things seemed to be going quite smoothly…the IV medication and supplies, more treatment equipment, and a nurse had arrived to give Julia her 5:00 PM Timenten via her PICC. As I was getting out the grenade looking IV med that was supposed to be Timenten, the nurse and I discovered that the label did not say Timenten, but actually said Zosyn. I called the pharmacy right away, and after some checking, I was told that I had the wrong medicine. Timenten and Zosyn are not the same medicine, somewhat similar, but the wrong medicine none the less.
I was very stressed as her Timenten was due at 5:00 and we wouldn’t be able to get our hands on the right stuff until about 7:00. The nurse had to wait around at our house for it to finally arrive. So, Julia did finally get her Timenten, but it was around 7:30 PM when she did…two and a half hours after the scheduled time. I was very stressed about this. Hopefully we didn’t ruin any of the hard work we did for five days prior. But, now we have our Timenten and Tobramycin to put into Julia’s PICC and Joey and I do it all. We can do it on the go, anywhere, anytime, which is very nice. We can live our lives!
Julia went to preschool yesterday with her PICC and when it was time for her 12:00 Tobramycin, we just stepped out into the hall, hooked her up, and she came back to the classroom to enjoy closing circle. How cool is that? One little girl did say, “She’s very sick?” Yea…she kinda is. You can’t tell just by looking at her though…she looks perfect.
This week is very crazy! I have two presentations in both of my classes this Tuesday and papers to write, power point presentations to create…I will be very happy when it’s all over. I am lovin’ my classes, however! Love this stuff and am so glad to be getting back into it. My professors have been so great, very understanding.
Heading home!
Julia's wagon of love! Thank you all so much for your gifts...Julia used everything to occupy her time. It's hard being trapped in a hospital room.
Can't wait to get home!
Playing at the park...PICC and dance clothes. Life doesn't get any better!
Words simply cannot express our gratitude for our family and friends who have been so supportive during all of this. Our meals have been first class, so wonderful. The many visitors during Julia’s hospital stay just brightened her day…the gifts lifted her spirits. The phone calls, messages, acts of service are so appreciated and cherished. We couldn’t have a better team standing behind us waiting to cheer us on and pick us up when we need it most.
Julia is blessed with such a great team of people heading up her care. She has great doctors and medical staff that are doing all they can to keep her as healthy as possible. For this, we are very blessed.
When I get around to it, I’ll post some video of what we do to hook Julia up to her at-home IV medication. I think it’s pretty cool!
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.