Today (6/2/2013) was a long day. We checked into the hospital Thursday for chemo and she has been fevering off and on since. Today they started her on vancomycin because the first set of cultures they drew on Thursday grew a gram positive bacteria. At any rate while the doctors were in talking to me about the possibility that she might be having an interesting reaction to the chemo but that it was really nothing to worry about, the nurse was starting the vanco and Rebekah starts itching her head hard and her head turns red. The doctors say its a common reaction to vanco called "redman's". Some iv benadryl and that got mostly better the nurse told me they would run the vanco over a longer period of time so that she might not react as much. She had to get blood right after the benadryl and before she could start her days chemo. While they give her blood they have to keep checking on her and that also means blood pressure which she hates every 15 mins. Then we got to start chemo. Trying to get her mind off of her being itchy and miserable I let her climb into the rocking chair in the room she was playing and got her ball when it fell near the chair I helped her back into the chair and got yelled at for treating her "like a baby" so the next time she was climbing back in I offered to help and she told me she didn't need any, she slipped and fell pulling her port access out and letting some of her chemo leak into the subcutaneous layer of the skin around her port. The nurse was called in quickly and it was estimated that about 6 ml of chemo actually went into the skin. They removed her port access and let what fluid would, drain out of her skin. Then they called the pharmacist to find out what the protocol is for this type of chemo when it infiltrates. Within minutes we knew what was to be done, starting with hot packs to help the chemo to move into the bloodstream and not damage the tissues near her port. She would not be able to be re accessed until the next morning so she would need an iv placed until that time so they could continue fluids and the antibiotics but her chemo can't be put through the smaller veins in the body because it would damage them, so that had to go on hold. about 15 mins after she fell the IV team was called. It takes a while for them to come up. and while we are waiting we had some visitors, it was so nice to have some thing to break up the eventful day that was happy. (Thank you Stephanie and Rebecca. I know you had no clue before you got there what it was going to be like in that room. it really was a blessing.)
When the IV team comes in to place her IV they are kind of nervous because they have heard what a rough morning she was having. They offered to use the " rocket" on her so she won't feel the poke. I had never heard of this and it was explained to me as blasting the lidocaine in a microfine mist into the layer if skin. (whoa, a hyperspray. is what I thought ) what I said was "really, just like on Star Trek" could I have felt more like a dork, um no. Anyway it is a little like the hypersprays they use in Star Trek but it only penetrates the top layer of the skin so not too useful for most things we would think of not wanting a needle for.
Back to the story she got her IV placed and the IV team was so surprised at how well she did they sent her up 2 prizes. The nurse came in with them and some emla cream to place on her port area so that they could inject her with the 5 shots of stuff they call white-aise ( kept thinking mayonnaise when I would think of the word so if I spelled that wrong I am sorry) right into where the chemo had leaked also to help the chemo to move into the blood vessels and out of the skin. Rebekah had a hard time relaxing ( I can't imagine why) when the nurses came in to do the shots. They offered to have 5 come in and do them all at once but I didn't think Rebekah or I could handle that. Her nurse and the charge nurse ended up doing them 2 at a time then the last one, the stuff was kind of thick so even though it wasn't very much (.12ml) it took a few seconds to inject, but Rebekah held still and I held her arms down while she was on my lap in the bed, I had to get her to lay back on me for the last shot as it was up near her collarbone. She didn't do as well as I had hoped, for her (there was a fair bit of shouting) but she did far better then the nurses had expected her to do. I guess most kids kick and scream and fight and that's just not her, or any of my kids, we just explain what's going to happen and why and they comply (except when it comes to housework.) So the charge nurse asked Rebekah to come by her desk and pick a prize from the treasure box when she was ready (Rebekah was crying some, who wouldn't be) Rebekah was ready to go pick a prize within minutes, but we were still doing the hotpack and she didn't have a shirt or anything on so I had her wait a little longer. She picked out 2 things she wanted and Erika said she could have them both because she did so well :) A tube of lip gloss with sparkles and a Disney princess paddle ball. One of the other nurses on the pod that day (Dave) gave her a set of wings and some soft pom poms to shoot using the slingshot she got on Saturday from Heidi which Rebekah used to shoot the nurses and the doctors who came to see her. lets just say that we left on Tuesday with an extra bag full of stuff she got while we were there in addition to the normal stuff we take from the room like the pillows they would throw away when the room gets cleaned (they are great encase something gets spilled on them or they get puked on I don't feel bad just tossing them) because they could have traces of chemo on them from her sweat or tears or any other of her bodily fluids and if she did have a germ of some type they just can't risk another kid coming in contact. (if your thinking, "Wow, I wonder how much chemo Autumn and Shawn have been exposed to." We think about that too somedays)
Well, that few minutes of acting like she wasn't hooked up to something pumping poison into her wasn't really worth it and she and I have decided that the next time she is actively getting chemo she must remain in the bed. But when she's just on fluids in would be ok to get up and move about.
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| The ink marked the swelling which didn't get any worse. |
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| At home after this round, she got a new dress and so did Evelyn. |
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| What do you do on a Saturday night in the ICS? Go cruising of course. |
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