To start, a PICC line is a "Peripherally Inserted Central Catheter". It is a small flexible tube that gets inserted into a peripheral vein, in Alexis' case it was in the upper area of her left arm, and goes up the arm and to the chest until it terminates into a large vessel near her heart. An ultrasound is used to guide the line through the vein and into the chest. They also do an x-ray of the chest to confirm the placement of the PICC catheter.
Alexis had this done at a hospital. They gave her the option of being put to sleep or staying awake for the procedure. I knew since Lex couldn't even sit still while a regular IV was put it that there was no way she would sit still while the "fished" the PICC line up her arm and into her chest. Alexis had another IV put into her arm. The anesthesiologist needed this one to put Alexis to sleep.
While we waited to go in Alexis was nervous but we tried to keep her mind off of it. Luckily, the doctors let Scottie and I come into the procedure room with her. That made both me and her feel so much better. I couldn't imagine how scared she would have been just going in there alone. As a matter of fact, they let Scottie and I stay with her until she was put to sleep.
The room itself was a little intimidating. Alexis all of a sudden wasn't so scared though. I was shocked. The nurses showed her all the cool things around the room and even let her play with the ultrasound machine. They let her use it to find the veins in Scottie's arm the same way they were going to use it on her arm. This made things so much better for Alexis. I have nothing but good things to say about the way the doctors and nurses worked with Alexis.
Once everything was set up and Alexis was ready, the anesthesiologist started the medicine to put her to sleep. Within seconds Alexis said "It's time, Mommy. 10...9...8" and she was out. No one even told her to count backwards or anything. It was silly but so much calmer than the last time she had to be put to sleep. That time she was screaming and crying so they put her right to sleep in that state - I watched her fall asleep in front of me with the tears still falling from her face. That killed me. Soo, Alexis being so calm made it much easier for me to walk out of that room.
They said the procedure can take anywhere from 20 - 45 minutes. Scottie and I waiting right outside the room. About 25 minutes later the doctor came out and said they were done and just waiting for Alexis to wake up. They let us go back in the room by her while she was still passed out. This made me sooooooo happy. I was standing by her side when she fell asleep and I was there the second she opened her eyes. Kudos to that hospital - once again.
When Alexis woke up she was still a little out of it. She had to be brought back to her hospital room where they would give her the first dose of her antibiotics through the PICC line - in Lex's case it was Rocephin. They wanted to make sure she didn't get any immediate reactions from it. Lex couldn't wait to get home though. At this point she had been at the hospital all day. They gave her the medicine and we waited a little while after to make sure everything went okay. Before we knew it, they were sending us home.
Alexis' arm was sore - they said it would be for the next couple days. We gave her tylenol to help with the pain. The doctors in the hospital also told us to switch back and forth between an ice pack and heating pad. This seemed to help Alexis. Within a few days her arm wasn't sore anymore and she was getting more used to having the PICC line in.
At this point we knew we had to figure out the easiest ways to make this work for the next 28 days. One of the biggest struggles we faced was taking showers. The PICC line can not get wet. There are covers you can buy to protect the PICC line from getting wet while you shower - we never got one of those though. The first couple times Alexis needed to shower her arm was still really sore so she chose to take a bath instead so I could help her and she didn't have to worry about lifting that arm at all. We covered her arm with a plastic bag and she kept her arm on the edge of the bath tub. I washed her hair and helped her bathe herself. After a couple days I told her I would buy her the cover so she could shower but she was still too scared of showering - so we decided to stick with the baths. That seemed to work for us. She is going to be 10 years old soon so I thought she would rather me not be there with her. I felt like it was an invasion of privacy but she seemed okay with it. I always tried to be as quick as possible for her. Throughout the entire 4 weeks Alexis kept saying "The second this thing is taken out I'm getting right in the shower and I'm staying in there for an hour!".
Another obstacle we had to face was what we were going to cover the PICC line with on a daily basis. They put a dressing over it - but that is clear and it also leaves the catheter dangling out. The hospital gave us a netting kind of cover. Although this was light and convenient - it didn't look too "cute" and I felt like the catheter could still get caught on things. I didn't want to risk it pulling even a little bit. I spent the entire week before Alexis got her PICC line put in searching for some kind of "PICC line cover". If you do a google search for PICC line covers it basically only shows you the water-proof ones that are meant for showering. There was only a couple websites that had anything fashionable. All the websites and forums say to just cut up a long sock. That just seemed silly to me though. How could there not be actual PICC line covers out there?
I came up with the idea of using baby leg warmers as a PICC line cover. They could slip right up the arm, be tighter on both ends (something a cut up sock wouldn't do) and the best thing of all - there are hundreds of styles and colors to pick from! I had a pair from our baby that I tried on Alexis' arm and once we decided it did, I let Alexis pick out new ones. I bought them from e-bay. I found that was cheaper than going to the store and buying them. I got one pair off e-bay for just a couple dollars plus shipping. You can also find them on many other websites. The good about buying them off websites - there are hundreds of brands, styles and colors to pick from. The bad - you have to wait for them to get shipped to you.
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| Alexis' PICC line covered by a baby leg warmer. - It worked perfectly! |
Every week Alexis' nurse came to change her PICC line's dressing and take her blood work. Alexis hates getting her blood taken. Luckily, when you have a PICC line they can take the blood right from it. It's much easier than having to stick her with another needle. The dressing changes aren't as easy. Taking off the old one was very painful for Alexis. The first dressing that the hospital put on the PICC line had to be changed 3 days after it was put on. This was the worst experience. The dressing the hospital used was awful. It ripped off Alexis' skin so badly. Her arm is still healing from that and it's been 5 weeks now. Since the first time was so traumatizing, Alexis hated the idea of getting the dressing changed every other time it had to be done. The nurse put a different kind of dressing on Alexis' arm though and it came off much easier. It still hurt when the nurse would pull the tape but nothing like it did that first time. Once the dressing was off the nurse would clean the area around the PICC line's insertion site. Alexis always said this felt so good. Her arm was usually very itchy and irritated from having the same dressing on for a week. When the nurse cleaned the area it felt very soothing to her.
Every time Alexis got her dressing changed she would get very nauseous and light-headed. I think it may have been anxiety. Alexis knew the nurse came every Tuesday morning, so she would start getting worked up about it the second she woke up on Tuesdays. Luckily, she never did pass out but every single time Alexis got pale as a ghost and dizzy. The nurse usually had to go as quickly as she could so Lex could lay down on the couch. I know getting blood taken didn't help either. That would also lead to Alexis becoming light-headed.
The first time Alexis got her dressing changed and blood taken I was standing right there next to her, trying to comfort her. She started to get light-headed until she was completely white. Her lips were starting to blend in with her skin. She kept saying "Mommy, I'm going to pass out". She started sweating and just feeling awful. The nurse was trying to finish as quickly as she could. I held a cold wash cloth on the back of her neck and was wiping her face with another one. A couple minutes later, Alexis was feeling better - but I wasn't. I started sweating and feeling really light-headed. I thought for sure I was going to pass out. I had to step away from Alexis and sit down. I hoped it was just going to go away but it didn't. I started to feel nauseous. I went into the bathroom in case I started getting sick. While all of this was going on the nurse finished up with Alexis. Lex was still feeling a little crumby so she laid down on the couch. Makenzie (our baby) started crying for me but I couldn't even go get her. The nurse helped me with her until I started feeling better too. It was the weirdest thing. I am a mother of three - blood and things like that don't ever make me sick. I don't know what happened that day. I felt like God took all the sickness away from Alexis and gave it to me - which is perfectly fine with me. I know it sounds a little crazy but this really happened. Every Tuesday after this first time, the same thing happened. I would be fine until Alexis started getting dizzy and nauseous - then within minutes I was dizzy and nauseous too. It happened up to the day Alexis got the PICC line taken out. I think I have finally found my biggest weakness - seeing one of my daughter's in any kind of pain.
The last time Alexis got her dressing changed was 3 weeks into having her PICC line. We finally reached the single digits in our countdown to when the PICC line would be taken out. The dressing change happened on Tuesday morning. Everything seemed the same. By Tuesday night I noticed Alexis was getting bumps on her arm. They were small and really just looked like heat rash. I had Alexis sleep with a mesh-like cover on her arm to let her arm get some air. The next morning Alexis' arm was much worse. It was red, itchy and the bumps were a lot bigger. I called my mom and ask her to come to our house on her way to work so she could look at it. When she got there she looked at it and realized there were bumps forming underneath the dressing itself. My mom thought it was either heat rash or just a rash from being covered for so long. We waited another day.
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| The PICC line with the mesh cover on it. |
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| Alexis' arm with the blisters caused by the allergic reaction to her dressing. |
I couldn't believe in the last week of having the PICC line in, Alexis got an allergic reaction to the dressing. I'm glad it didn't happen in the beginning though. That would have been so much worse. Alexis only had to keep it covered for two more days with the rash.
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| This is the different dressing that the nurse put on Alexis' arm for the last couple days. |
The next night I gave Alexis her very last treatment of Rocephin through her PICC line. When the IV beeped, telling us it was done, Alexis was sooo excited. Until she remembered she was going to get the PICC line taken out the next morning. She was not looking forward to that. She knew the dressing was going to have to be ripped off again. Plus the whole idea of the PICC line coming out really freaked her out. Alexis wouldn't let the nurse near her arm. My mom had to hold her down and the nurse just quickly pulled it out. Alexis didn't even know it was out. That proved to me she wasn't in any pain, she was just scared.
Now Alexis' rash was going to be able to start healing. Within a week it was so much better and before we knew it the whole rash was gone. It's now been two months since the PICC line was taken out. Alexis has a couple scars on her arm but they are small.
All in all I would say we had an okay experience with the PICC line. I don't think I would say the same about the medicine, but the PICC line itself was okay. I am so proud of Alexis for being so strong through all of this. She proved her strength over and over again within those 28 days.
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| "You never know how strong you are until being strong is the only option you have." |
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