Ah CVL I thought you’d be coming out the normal way. We’d come in to Day Surgery and have it removed. But Jesse had other ideas, I guess her skin decided that was the boring way. I’d have taken it.
Friday began as any normal Friday. Ferfer came in the evening and helped me change Jesse’s tape. When I finished the change I noticed Jesse scratched a couple of times, but I thought she was adjusting to the new tape.
Last Friday she spilled water on herself within 1 hour of tape change, and we had to change her tape again. Jess learned a valuable lesson that night, “get my line wet, and I have to go through tape change again.”
Saturday started normally too. I went ice skating for a bit while the girls helped Mike hanging a ceiling fan for our neighbor. That evening I flushed and heprenized Jesse’s line per our usually daily routine.
After I finished she went to the table to eat dinner. Halfway through she suddenly exclaimed, “Mommy, I spilled watermelon on my tape.”
I checked her tape, it looked dry. But then I noticed it was red under the tape. Immediate red flag. Her skin has never been red under there the day after tape change. Then I noticed the foam bio patch over the entry spot was soaked. Big red flag. My immediate thought was crap the CVL has a pinhole again!
I carried her to her bed room, grabbed my tape change bags ( I have everything divided into daily line care and tape change items), and began using detach all to remove the tape.
As I got the first layer of tape off, I noticed the dressing was wet underneath. Not the pinkish wet caused by the detach all, but a clear wet.
We called the oncology emergency line. The funny thing was her doctor was the one on call. He suggested changing the dressing, watching it for 2 hours, and if bio patch became wet again to call him.
I had cleaned her area with cloroprep right before he called, and noticed that right at her CVL entry site it wasn’t drying. I have to admit at that moment I was thinking a bad word.
We covered her site, and on doctor’s orders brought her to the CHKD emergency room. Mike stayed with Christine because she began to cry when I was changing Jesse’s tape. Ferfer was kind enough to ride down with me to CHKD at 7:30pm.
We arrived at the emergency department around 8:30pm. They placed Jesse in the quiet room to protect her since we have no immunizations. Then we were taken to the casting room to meet with the doctors.
When I explained what happened to our nurse and the resident, they had a look of “oh crap what do we do?” at first they talked about sending us home, then thankfully the VAT team person came.
While she was gathering supplies, Jesse was laughing and playing with Ferfer. Ferfer asked her where the little girl who was asleep when we arrived went. Jesse replied, “I’ll go look for her!”
We removed Jesse’s tape for the third time that night. She flushed the line, and saw no hole. But then we noticed her skin where the tape had been was weeping.
The VAT team nurse immediately said we need to get that line out because her skin is over the tape. She spoke with the head doctor, who had talked to our doctor, and they called the OR to see if she could be scheduled to remove the CVL on Sunday.
The resident surgeon came to see us. He told us that they had an out of state case coming in tomorrow, but they would fit her in. I am fine with that because this is a special case, and I am thankful to get that line out.
Around 11pm, we were moved upstairs to 8b. Jesse was really excited to see her friends. She sang a song, ate some Cheerios, and colored.
At 12am, she had to stop eating to prepare for whenever they can take her to the OR.
The nurses also tried to place a line in her hand so they we could have fluids going to maybe take an edge off the hunger. But Jesse’s body wouldn’t cooperate with the needle insertion. After three tries, we decided that we’d let them place the IV in the OR.
Jesse fell asleep about 1am. I layer awake for awhile. It’s hard to sleep after you’ve gotten a rush of adrenaline.
Around 7:30am, the surgeon came to see us. She mentioned that they didn’t know when Jesse would have the CVL removed, but it would happen today.
At 8:30am, our primary oncologist stopped by. We talked about her having the CVL removed, and that he still wanted to see her Tuesday to go over her scans. He did tell me that her left kidney is still swollen. And they plan to keep a very close eye on that kidney. I really hope in time that kidney will fully recover.
I talked with Mike around 9 telling him that I didn’t think her surgery would be until 2 or 4 pm. Jesse awoke around 10am asking for food, but quietly accepted she couldn’t have any until after the CVL was removed.
At 11:30am our nurse asked if she was ready to go for her surgery. I was shocked. Mike hadn’t reached the hospital yet, so I called to let him know.
They took us down to the Pre-Op waiting area to get her paper work in order and meet the anesthesiologist, who was one we actually had not met. Around 12:30pm, they took Jesse back. By 1:15pm, the surgeon was in the waiting room telling us that everything went really well. She also told us that we were going back up to 8B.
A few minutes later the PACU nurse called us back to see her. Jesse was screaming with her eyes closed and thrashing around the bed. I thought she was in pain, but the nurse said she woke up from the anesthesia too soon. We gave her some morphine, and she went back to sleep. At 2:30pm, they took us back up to 807. Jesse slept until 3:30pm.
Our nurse called the resident to see what they wanted to do about discharge. I am over residents. I know they need to learn, but half of them come look that the papers, then leave. She didn’t come look at Jesse at all. Only when we started pushing about when can we go home, did the resident come see her. And the nurse had to page her to get her to come back. I just wish they would use some common sense.
At 5pm, they brought Jesse dinner. She was so hungry she even ate their rubbery corn. Finally at 6pm we headed home.
Jesse fell asleep on the trip home and slept all night. I slept with her because I was concerned that the rash on her chest looks like it spread to her neck. And this morning we are seeing it on her arm. It looks like poison ivy, but I can’t think of anywhere she go into poison ivy. We have called her nurse to see if they want to she her today or wait until tomorrow.
Mike and Jesse in 807. Jesse had just asked Mike is she still has cancer.