Posts Tagged ‘PICC’
I thought I’d share a little story with you. It is, in my opinion, really quite amazing. It all began at dance… Julia not wanting to go into her dance class alone, and me not wanting to go in with her. She is a big girl now and should be going in all by herself, just like all the other girls do. Well, to add an interesting twist, she just happened to be in the middle of her clean-out. Her PICC line was still in, but she was feeling just fine and wasn’t restricted on her physical activities much. I told Julia that she could either A) Go into dance by herself like a big girl, or B) Stay out in the waiting area with me and be bored. Julia didn’t want to go in and I didn’t want to go in either. This may seem very cruel, but everything I’ve read and have been told is to treat your CF child like you would your non-CF children.
As this dialogue was going on, some of my “dance” mommy friends came over to see what the commotion was all about. When they saw Julia’s PICC, they all naturally wanted to know what that was and what was going on. I explained things and they all said, “Janna, you go in there with her right now! She has a PICC for crying out loud!” So, whether they were right or not, I felt bad and went into dance with Julia. Julia was happy, and I sat in the corner, wishing I was out in the waiting area with the other mommies.
Half way through the dance class, Julia let me step out to help Austin with some homework. It happens that I never went back into Julia’s class because all the dance mommies wanted a more detailed scoop on Julia’s condition and her PICC. I gave them the information they wanted and explained CF and why we were treating Julia.
It just so happens that one of the “dance” mommies has a one-year-old girl with a pretty severe skin condition. I believe it’s called Mastocytosis. She filled me in on some of the details and it sounded pretty awful. The body produces all of these mass cells and these cells can start being deposited on vital organs and cause all kinds of problems. Her little girl had a few of the spots on her skin and I asked to see them and she showed them to me. What was hard for this mom was that there was no parent-to-parent support system like they have for us CF parents at PCMC. This mom wanted to talked to another “Mastocytosis” parent and ask questions, but she had no one. She was simply told that because of HIPPA, they couldn’t get her in contact with another experienced parent.
Fast forward one week later. Julia, Olivia, and I were at McDonald’s Play Place. In walks a mom with her son. They had come to have lunch and play. Well, this boy just happened to be covered in spots…his face, his arms, legs, pretty much everywhere. The spots on this child were very similar in color to the one on my friend’s baby, so naturally I was wondering if this boy had the same condition. My dilemma…do I ask this mom about her boy’s spots and if so, how should I go about it?
I sat there for a while, debating if I should even bother this woman. My internal dialog went back and forth for quite a while…yes…no…maybe…yes…no. Something inside me kept pushing me to ask her about her son and his spots. So, I did.
How?
“Excuse me, but would you mind telling me about your son’s spots?” Yup, that what I said and she was more than happy to tell me all about his spots. I learned all about her son’s condition, even though I can’t remember it’s very long name. I also scored her name and phone number just in case my friend wanted to contact her.
I was so excited to go to dance that afternoon. I told my friend all about the spotted boy at McDonald’s and it turns out that his condition is in the same “family” as her daughter’s. She was so excited to hear about it and even more excited when I produced the name and phone number of his mother.
The miracle in all of this is that this skin condition is very, very rare. For me to run into someone at McDonald’s with a similar condition was quite miraculous. I feel very satisfied to have been the connecting link for these two women. There is nothing better to have another parent to talk to who knows what it’s like to walk in your shoes. CF parents are so privileged to have our parent-to-parent connections so we can share each other’s burdens. The support of the CF community is a true life saver for me.
Speaking of small miracles…Julia’s small miracle for today was “the call.” I hate the anticipation of a culture results phone call…it really kills me. Well today the call came…drum roll please…
Negative! What a blessing this is for us. One small victory in a life-time war we are waging. This doesn’t mean that we won’t fight this particular battle ever again. It just means that today, we won!
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.
