You served us well dear CVL,
But alas she had to grow
So now you hang out in a vein
That is too shallow.
Cheesy yes. But as I was writing the title it made my think of rhyming. And I have not had anything to drink today, but if Chris keeps pretending to be Bob or Taylor Swift I might have to.
Sidetrack to explain Bob. I think it is the take off on the Disney Channel “Good Luck Charlie” show. I caught her and Jesse getting married earlier today. Then she keeps walking around the house asking me my name and introducing herself as Bob. To which Jesse asks: “Bob the Builder?”
Mike asked her what she does as Bob. Chris told him that she goes to work and comes home to sleep. (Mike has been working a lot of hours this week) He asked her what Bob’s wife does: her reply “She babysits.” The wife is Jesse who is walking around holding a Minnie mouse and naked doll.
Then Mike asked her what Bob would like to drink. He was trying to trick her into saying beer. But she replied with Sprite.
Back to Jesse’s CVL.
Since last PICU stay we have been having trouble on and off with getting blood return. The line is in a horizontal vein (sorry it’s the best way I know to describe it) versus the super vena cava which is vertical. Because of this when we try to get returns of blood the vein wall blocks the blood. It will allow heprin and saline to flow in.
On Thursday at clinic, we opted to stick Jesse in the arm for labs. I know this is a very stressful process for everyone involved, but we needed the labs while we waited for the TPA to work. We tried the lines after an hour of the TPA sitting there. Red line worked. White line nothing. We decided that I would try that line again when I got home.
Our doctor also decided that we needed to replace the line. Right now it looks like the line will be in her through December. As tired as I am of that line and worrying over it, it will save us from pokes in the arm. She will need labs done at least once a week while we are on the Accutane to watch her levels. Plus when she is getting the GMSCF shot they want to watch her ANC levels.
On September 21, we will meet with the surgeon who put the CVL in. And on September 30, she will undergo surgery to put the line back in her super vena cava. I am not sure at this point how her line will affect whether or not she gets the 96-hour infusion of IL-2 (T-cell booster) which was supposed to start September 26 and end September 30.
I am sure I will find out next week 🙂
Other than her CVL, her labs where great. Her ANC was over 10,000. We did have a question about the shots. For the last 5 shots, I have noticed a large welt on Jesse’s leg at the injection site. When I asked the doctor her said this was possibly a level 1 capillary leak (aka third spacing). The antibody can cause this. If Jesse reaches a level 3, then the antibody will be stopped and not continued. Hopefully we can make it through the last two rounds. (There is currently in 2011 no study saying 3 rounds is better than 5 and vice versa. As a parent you just want you kid to get everything that will help them live).
I tried the white line when I got home nothing. And as of yesterday, the red line had stopped working too.