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Tuesday PM (3/8/05)

9:00 PM: We're finally back from clinic. It was an incredibly long day. Susan and Sophie left the house at 6:00 AM, arrived at clinic at 7:30, left clinic at 6:00 PM, stopped for a quick dinner, and arrived home at 8:00 PM. Because we didn't have to wait for blood counts this morning, Sophie was first in surgery, and that gave us a head start on getting her hydrated for the Cytoxan (chemotherapy). It took a couple of hours, but she finally reached the proper hydration level, only to test positive for blood in her urine. We had to recheck that several times, because the chemo can cause blood in the urine, and they wanted to make sure they had a good baseline (and also wanted to figure out what was causing it). They ultimately decided she probably has a urinary tract infection (official results will take two days) and gave her some additional medicine to protect her bladder before and after taking the chemo. They finally started the chemo at 1:30. That took a half-hour, and then we waited for 4 hours of fluids. There was no nap until the last 15 minutes of the drive home, so she was a total crab when we got home and she had to take medicine (or go to bed, or anything else she didn't want to do). Other than that last fussy period, she has been an absolute doll today.

Our biggest frustration of the day was dealing with the home health care company. The way we understood their role is that they would supply us with training and medical equipment. Up to now, they have pretty much stuck to the supply part of their responsibility. Since we will need to administer chemotherapy ourselves starting tomorrow, we are anxious to make sure we know what we're doing, and today, the home health care people called to confirm a shipment for tomorrow (but no training). I mentioned our concerns about not knowing how to inject this drug to the nurse practitioner at the clinic, and after several phone calls, she got it straightened out and said that the nurse would be coming tomorrow. A nurse also sat down with me and talked me through the procedure, and I'm certain I can handle it, but we're finding it quite frustrating that the home health care people are being so un-helpful.


I am sorry that home health is being such a pain. I know from dealing with these agencies over the years for infants, that some services will do all that they can to be helpful and others just don't seem to care very much. I am certain that both you and Randall are capable of administering Sophie's medication at home. The proceedure really isn't much different than when you flush her broviac. I realize that is can be intimidating when it is your own child to whom you are doing this proceedure! I have faith that you will do well, that Sophie will respond well, and that all is going to be well in the end. I am sure that the UTI will resolve quickly also. Be blessed and encouraged because the Lord is on your side. Love, Eileen