Snow Day

Looking outside at the blizzard, for the first time I'm ok with being trapped inside the hospital for over 24 hours straight! I keep trying to get Sylvie to look outside but she's pretty uninterested right now.

Last night was the usual. Sleep for a couple of hours and then, well, madness. The attending physician introduced himself to me right before Sylvie fell asleep; he seemed a little arrogant for being at oldest, 30. Sylvie's respiratory rate (i.e. how hard it is for her to breathe) gets pretty high at night and we agreed if it hovered between 60-85 that we would give Sylvie some morphine. Everything was relatively normal until some time after 2 am when Sylvie's NG tube continued to clog. The nurse unsuccessfully tried to flush the tube. In the past, this has always worked. On the other hand Sylvie had finally fell into a deep sleep. The nurse returned, said she had called the doctor and they would do one of three things:
1). Replace the tube with a new one
2). Remove the tube and deal with a new one in the morning
3). X-Ray her stomach to see if the tube had coiled

And I told her I'd do one thing period: NOTHING. Since she wasn't getting any food through the NG tube anyway, I didn't want to have to wake Sylvie and thus torture her. Somehow I could take it better coming from one of the doctors I already knew and sort-of liked. So the doctor comes in; I have no idea what time it is. He said, "Let's remove it." I said, "Wait until the morning." And that was it. Less dramatic than I had played it out in my mind.

I think the beeps and alarms will drive me insane. There are 4 things attached to Sylvie's IV stand that make noise. On the other side of her bed is the vital's monitor which makes sounds practically non-stop. I think Michael may need to run another marathon when this is said and done. I'll need to go to a silent yoga retreat for a week or at least sleep with earplugs, an eye mask and a very warm blanket.

We woke up around 7 am. Sylvie had a 101 fever again. The blotchiness that we noticed on Sylvie's leg yesterday was now a full blown scary-looking but non-itchy rash covering her legs, arms, scalp and forehead. Can't this kid get a break? So we tried to give her Tylenol which Sylvie spit all over the place. Twice. The resident suggested a suppository and both myself and the nurse said GOOD LUCK. They gave Sylvie some Benadryl which will more or less confirm that it's an allergic reaction to one of the many antibiotics.

To my surprise, she had a few moments of being in a great mood and we played with the Dora 3-D Deluxe Play Set that one of the nurses gave her yesterday as a consolation prize after they cleaned and changed her crusty port.

In addition, Sylvie's hair is shedding like crazy. It's all over the place. Combined with the sticky Tylenol that she spit everywhere, it's adhered to her fingers, face and blanket. Yesterday was Red Devil chemo day and that's the leading culprit in her chemotherapy cocktail that causes hair loss. Note to self: Must wear hazmat purple rubber gloves for 48 hours because of toxic tushy. I can't remember if we gave a few of these or the regular latex gloves to Kitzchy because she was cutting onions :-).

One of the doctors just stopped by and said that Sylvie's blood counts are going up which is good. They increase towards the end of the chemo cycle and then get knocked down again. That means we have 5 days in which Sylvie might be feeling better. In addition, Sylvie's doctors said that she also should be feeling better because the tumors are smaller within 30 days. Something to look forward to.

Sylvie finally fell back asleep thanks to the Benadryl. I'm sure someone will come wake her up any minute because that's how it works in hospitals. I'm so curious how this will affect her sleeping once we finally go home. On one hand she will be in her crib or the guest bedroom queen size bed as opposed to the hospital Craftmatic Adjustable Bed with an LG Flatscreen TV mounted on the wall. Once again, she looks so peaceful.

I think Dr. Harris is back this week. Looking forward to seeing him later.