New Central Venous Line

Thursday morning began with the alarm clocks ringing back to back, and me realizing Mike had fallen asleep on the couch watching the new HD baseball channel his grandad showed him. (that is quite the norm, and when he does fall asleep on the couch I don’t wake him)

He got up and took Chris to his aunt’s around 7:30. We decided to take her separately so that she wouldn’t see all of us drop her off and leave. I am not 100% sure of what Chris thinks the hospital is like, but I worry she views it as being all fun and games for Jesse. Chris is 4 years old, and very worried about being left out.

Mike told me she didn’t even cry when he left.

We left here around 8:20am. Our appointment time was 10:15, but traffic has been horrid lately going into Norfolk so we opted to prepare for that.

Mike decided to go the midtown tunnel route. Have I ever mentioned how much I hate that tunnel. It goes from 3 lanes down to 1. This wouldn’t be so bad if people were polite. But there are drivers who feel they are more important and cut you off. And strangely they do it with personalized plates…

We arrived at 9:30 and began our wait. Jesse did extremely well with not being able to eat or drink. By 12:15 we knew the doctor was running an hour behind. I am totally cool with this. I would much rather the surgeon take his time with a patient that needs it to live and be well.

While we waited child life brought out the sleeping mask for Jesse to play with. She had a blast playing and smelling different scents you can use when going to sleep.

I had requested a special tape be used for Jesse’s new CVL. This and skin protect. Both I brought with me in case they didn’t have it. I gave them to the anesthesiologist.

Here is where 20 rounds of radiation and spending time with these doctors and nurses paid off. Our friend from Child Life suited up in sterile clothing to go with Jesse into the OR. Jesse recognized our anesthesiologist, and her surgeon.  We laughed so hard when the surgeon assumed she was on verset because she was so calm and shook his hand.

When it was Jesse’s turn, our child life friend carried her through the double doors. Jesse went happily along greeting all the characters painted on the wall.

What a difference from almost a year ago when she went screaming, reaching for us. In fact another of our child life friends was with us that day, and ever since she has been pushing for kids to have the option of pre-med so they feel calmer going back for surgery. I am so glad she has done this. So glad. I really would love to keep other parents from having that visual nightmare.

Mike and I went to the waiting area. Within a few moments our child life friend came out. She laughed about Jesse wanting to hold the sleeping mask herself even as she drifted off. Everyone was amazed at how calm she was. I am too. And I am very proud of her. I don’t know if I could be that tough.

When the surgery was complete her surgeon came out to speak with us. He told us that he had run the line down through her juggler vein in her neck into the super vena cava. Then he tunneled the ports of the CVL out of the right side of her chest. He then moved to remove her old CVL. He told us that he some difficulty with it because the line had scarred in. I asked him why the CVL wasn’t placed in the juggler to begin with.

He explained that this is a new procedure in pediatrics. While this has been standard practice with adults, they have just now began using it on kids. And he is one of the few to do this right now.

The reason the juggler is better for the CVL is because if she raises her arms the CVL can return to the right place when she puts them down. In the old location, there was a space the CVL was fed through that was too small. The first time the line was placed this space had to be stretched to fit the line through, and it returned to it’s normal position. Being tight on the CVL meant when Jesse raised her arms, it would pull out of her vein a bit. Instead of returning to previous position as it should have,  the tightness caused it to remain in the new place. Over time plus her growth led to the needing a replacement.

Jesse slept for about an extra hour after the surgery was done. She awoke near the end and began to cry. The anesthesiologist gave her extra medicine to make her go back to sleep. They let us come back around 4:45pm.

As we waited, the anesthesiologist, came to see us. She was really upset that she had hurt Jesse’s eyes. Turns out that when people are put to sleep their eyes can stay open, which can accidentally be scratched if equipment is inadvertently dragged over her eyes. So they use paper tape to close and protect her corneas.   When she removed the tape, it looked like a layer or two of Jesse’s skin came with it. They and I figure it was because of the Accutane drying her skin out so badly.

From the surgery she has a hole in her neck, one in her right shoulder, one where the new CVL exits, and one where the old CVL was. I also learned in the OR they don’t use the tape kits we do because everything there is already sterile. So I told Mike I would need to do a tape change on Friday. Which is actually great because it gets us back on tape change Friday. I have this strange idea that doing her tape and caps change when she is back on her weekend antibotic is a great idea. (know on wood it has worked well so far 🙂 )

The surgeon did use the bandage I brought.

I asked Jesse if she wanted some apple juice and she popped right to. She also asked for crackers. As she ate, we finished paper work and waited on x-ray to check the placement of the line.

Her neck steri-strips accidentally came off.  This is hard place for a bandage because of the movement.  The resident came along and put a larger bandage over the place. I should have asked when to remove it, but I guess we’ll find out Monday.

We asked the nurses for the disposable green surgeon hats. They all had a good laugh that we wanted to take some home. Our nurse found some white ones. The resident went to another area and found the green ones. We really appreciate all the nurses in PACU and surgery. They have been wonderful to us throughout this adventure.

At 5:30pm we headed out. Mike went to get the truck. Jesse and I waited in the lobby where 3 little girls where playing. One little girl was very interested in Jesse and why she was laying in my lap. I explained she had just had surgery.

This little girl and one of her sisters gave Jesse one of their stickers. I was blown away by their generosity. One had to be 7 and the other 5.

Jesse stayed awake for over half the ride home. She even tried to sing some.

Mike and I reached Norge in time to fill Jesse pain prescription. He dropped Jesse and I at home, then went to get Chris and dinner.

Jesse woke around 9pm with some pain. I gave her the medicine. She lay on the couch watching TV. Around 1am, she woke me saying she was hungry. I feed her some dinner and we went back in the play room.

This morning, she got up and didn’t complain of any pain. She has been running around playing. The only time I had to give her medicine was when I changed her tape. She had a great deal of pain. Tape changes are normally stressful, but this was one of the top 5 most stressful tape changes she and I have endured (I do them). Ferfer was very gracious to come help me. I know it was hard for her too. Her nephew, who is 6 weeks younger than Jesse, came along. He had a blast playing with the surgeon disposable hats and mask.