There is a light at the end of the tunnel

Serenity is doing much better than before. Monday she only had a fever once, at 4:00 a.m. So far today she hasn’t had one since 12:30 a.m.

Sunday she had a CT scan. It was pretty traumatic. She wasn’t sedated & I didn’t think she would be so afraid of the machine. She was hysterical and screaming. Phil & I were both there, holding her hands, rubbing her forehead, reading a book to her, talking & singing to her. She would calm down and then a movement or noise would set her off again. I felt really bad.

There had been some question as to whether or not she ought to be sedated for it, so finally I asked could we just sedate her. It had been 6 hours since she had had anything to eat or drink except the contrast for the test. I had refused to nurse her during that time just in case she did need to be sedated, since the nurse had mentioned it. I was pretty upset when I asked that she be sedated and the technician informed me that there is no anesthesiologist available on the weekends, so we would have to schedule it for the following day. After she had gone hungry all morning and worked so hard to drink all the contrast they wanted her to have! I was pretty sure she wouldn’t agree to drinking it again the following day.

Eventually we did get her settled down enough that they were able to do the scan. All in all it probably only took us a half hour but it seemed like forever, and I felt awful knowing how terrified she was. For one thing the machine made a big noise while it was running. It wouldn’t have bothered an adult but here she is afraid of the sound of the pressurized air, afraid of the sound of trucks driving by outside, afraid of sounds she hears outside the room when the nurses are moving stuff around. To be lying on a narrow elevated table and then hear the noise from the machine surrounding her was terrifying to her.

Serenity has had two platelet transfusions since we’ve been here, so her platelets are currently in the 50s. Her hematocrit is still quite low. Overall her numbers have been dropping slowly. They are not as low as they were when we came in, but there is definitely a downward trend. She is still getting the Neupogen shots every night – horrible, because she begs not to have to get them – and her ANC has come up from 0 to 700 and is holding. I asked the doctor about it because she’s had the shots 6 times now and yet her ANC isn’t going up any further. (It did move to 900 one day, but then dropped back down to 700 the following day.) The doctor said the fact that it is holding at ANC rather than dropping along with her platelets and hematocrit mean that the Neupogen is doing something. A good thing I guess, but I really wish we could stop giving her the shots. I meant to ask the doctor about Neulasta, but forgot.

Serenity has become very temperamental these past few days. I think she is just fed up with being here and being stuck in this room. We’ve only been able to leave the room one day during the 9 days we’ve been here.

Today she threw up and it got all over her port dressing, which then had to be changed. Getting the dressing removed is probably the thing Serenity hates most. She really really really does not like it. I was just sick to my stomach that she had to have it changed all over again. She had it changed this past Thursday and it will have to be changed again this coming Thursday.

Other than that I think we are close to coming home. We will probably come home on IV fluids, the Neupogen shot, and antibiotics.