Backtracking just a bit here. I began this post yesterday but was unable to complete it. So here's a run down of our admit for round 4 of chemotherapy!
We arrived...and in one piece. The weather is starting to get bad here and we were driving just as the rain began to turn to ice. I saw numerous cars off the side of the road, and some stopped in the middle of the highway after hitting the side rails. I'm not known for my particularly skillful driving in snow and ice, so I erred on the side of caution and drove 50 mph most of the way. People were passing me left and right and each time a semi went by my windshield became virtually non transparent. I have a history with mailboxes, I'm not sure if I've mentioned that in the past, but a nice big mailbox on an icy day seems to attract my Explorer and I wasn't going to take any chances.
We've been waiting most of the day. First we waited to be called to the clinic, then we waited in the clinic for the nurse. Finally the nurse came and did her RSV test...which was negative. Then we had to wait on the labs. We had to reach the magic number, 1,000 before they could admit us. I knew for sure she'd make her counts, but actually, it was a close call! Her ANC was only 1,143.
So we waited for a room to open up, and our floor was full, so we began our pre meds in clinic. Premeds are anti-nausea and benedryl to prevent that nasty rash. That knocked her out so she cuddled up on mommy's lap and took a nice nap. They started chemo while she slept, then woke her up so we could take her upstairs to the hemoc floor. Because there were still no open rooms, we once again found ourselves waiting in the infusion room. Chelsea got nice and woken up and was ready to go once we got there, so I changed her diaper and we headed out into the hall. Immediately we were stopped in our tracks. What?!!! Isolation, no hall cruising?!!! That's wrong I told them, she tested negative for RSV this morning. Well not on the oncology floor...for the protection of the other patients, they must be on isolation for another 2 weeks.
Tell me then what does this mean? Are they still concerned she may have RSV? If so, then what about my baby? If there's any doubt that she's truly negative for this virus, she should not have been started on chemotherapy this afternoon; a chemotherapy so powerful it will knock out her entire immune system, all of her white blood cells, her platelets and her red blood cells. Tell me if they're still worried she has RSV, how will she fight it when her body is completely depleted of all it's defenses in 7 days?
Angry, frustrated, tired and hungry, I was relieved to get a room around 6:00 last night. Small room, no bathtub, right by the nurses station, but seriously at this point I was looking for reasons to be pissed. The problem was I didn't know who to be mad at. I couldn't blame the nurses, they were only enforcing this crazy isolation rule. I couldn't be made at Chelsea, none of this is her fault. The only person left to be mad at was Ryan. Just kidding. While I didn't call and blame him, I did call and vent. He asked what he could do, and of course there's nothing he can do, there's nothing any of us can do. I did ask him if he could come up a little early on Friday so I could leave and get my hair cut. He said no. Then I asked him why he asked what he could do. You can probably guess how this story ends. I'm going to get my hair cut on Friday! While it doesn't solve all my problems, I think I'll be ready for a short escape by Friday.
Last night I requested that they leave the big bed in the room so I could sleep with Chelsea. I just love sleeping with her even if it means I don't get much sleep. She decided she wasn't ready for bed until 10:45, and then she was ready to rock and roll at 6:30 this morning. Nothing like her normal 12 hours of sleep! Today after trying a couple of different medicines in her line, the nurses were able to get blood return on the line that was giving them problems last night. This was a relief as I just have too much to deal with right now. I talked to the doctor today and the official rule is that she must stay in isolation for 4 weeks after her last positive RSV test, which was January 21. I'll share more of my thoughts and frustrations with this extended isolation later. My mind is tired and I must rest it.
Hello world!
3 years ago
3 comments:
I am sure it's just as an extra precaution. On the bright side of it... you know they are going to be doing the same to other patients who have had some nasty bug, and it will prevent Chelsea from getting any tiny remnants that may be left.
Good grief! How many more rounds do you have now? I've lost count. I'm guessing two? The hospital doesn't sound too well organized, that can be frustrating! There was a time we had to spend a couple days in the urgent care unit because the oncology floor didn't have any avaliable beds, so we were stuck in our very tiny room for the two days, (didn't want to bring him into the playroom since it had been exposed to childern with who knows what kind of germs! the longest we had to stay on the hemoc floor without leaving was two months...it wasn't too bad since Will seemed to be doing great, that's really All that matters!!! Pretty soon this will all be in the past!!! Try to focus on the good and try to ignore the other stuff. :)
Driving in the snow sounds scarey!!! I've never acually done that, glad you're o.k!!!!
Just be glad she hasn't tested positive for VRE! It means an entire round in isolation, that's right, 6 months of isolation! We are lucky if we get out of the room for 1 hour a day and that's only when everyone else is in bed. She is not allowed any contact with any other children here!
I hope that Chelsea breezes through this set of chemo and will be back home before ya know it.
Take care,
Nicki & Ashlyn
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