8:30 AM: We had such a stressful day yesterday, we didn't have the energy to do an update last night. Perhaps with a good night's sleep behind me (Randall did the middle-of-the-night IV meds for Sophie last night), I'll discuss our day a little more calmly.
When Sophie came home from the hospital last Friday, the infusion pharmacy we used (Curascript--nearest office located in Greensboro) sent the medicine by courier, and it arrived an hour or so before she was due to have it at 7:00 PM. They said they could only give us four days' worth at that time because it took so long to mix and they had not been given very much notice to prepare it. Yesterday was when we were due to get another shipment. I called at 8:50 yesterday and got the answering service, and then Randall called at 9:30 and spoke to someone who told him a shipment was going out at noon. Randall said we had a few extra supplies it would be nice to have but that they shouldn't hold up the medicines just to get us the supplies; he said he would do his best to include the extra items (and would make sure they didn't send the "default" items--like needles--that we don't need or want).
As we've mentioned, we had "backed up" her dose to get Sophie on a schedule that was convenient for taking her to day care, so she was due at 4:00 yesterday. When we still didn't have the medicine at 3:30, Randall called again and spoke to a pharmacist, who said according to their records, she had enough medicine to take her through her morning (11AM) dose the next day, so they hadn't mixed or shipped anything. Well, even if we hadn't backed up the dose, we would only have had enough medicine to run through 7:00 that day, so their calculations were clearly wrong. He advised us that we should have asked to speak to the pharmacist when Randall called in the morning, because whoever we spoke to didn't know what was going on (obviously!). I'm not sure how we should have known to ask for a pharmacist, since no one had ever told us that before, and it's not in their materials, but I guess we know now. He said he would mix up a batch and have it shipped to arrive by 7:00 (on time according to their notes, but 3 hours overdue based on our schedule). Randall called our doctor, who was irritated by that but said it wouldn't harm her to have the medicine that late.
The pharmacist called me at 5:30 to say the driver had left at 5:15 and would arrive by 7:30. I again expressed my irritation, but there really wasn't anything I could do. Revival (which went well) was from 7-8, so I stayed home with Sophie to wait for the shipment while Randall took Elisabeth to church. When 7:30 came and went and there was no sign of the courier, I called the answering service (who said they would look into it), and then I called the doctor to see if we needed to come up with a contingency plan. He said as long as she got a dose within 24 hours (8:00 AM), he wouldn't worry. The other option would be to take her to the local ER, but that would carry a risk of getting some other kind of infection. He got the number for the pharmacy and said he would see what he could do.
The medicine finally arrived at 8:00 PM, and I hooked her up right away. I called the doctor to let him know he could stop trying to get in touch with the pharmacy--he said he had really let whoever he talked to have it, but it was probably the answering service, so it probably won't matter. Then the head nurse called me at about 9:00, very apologetic. She said she had been out of twon for 5 days and had not been on top of thing like she usually is. She checked the medicines and where Sophie was in the course of treatment and reassured me that Sophie would be fine (which I knew) and said she would look into why there was a problem. I said my primary concern was that we had again received only four days' worth of medicine (the next shipment would be coming on a Saturday of a holiday weekend), and I didn't want to have this happen again. She assured me that I would have Sophe's medicine on Friday, but if I hadn't received it by 6:00 on Friday, to call the answering service--she would be on call that night and would ensure we had the medicine in time. That's great, but I do think we'll be calling the head of the Greensboro office today to register a complaint.
It's frustrating enough to receive supplies we didn't ask for and don't need, to put up with "kits" that don't contain the right pieces, and to ask for supplies and be sent the wrong things. But we just can't tolerate miscommunication that results in significantly delayed medication for our daughter--even if this time the delay won't affect her health. We'll obviously stay with this company long enough to get the rest of her medication through 5/29, but we'll be looking for a pharmacy that fits our needs better, and we'll let our insurance company (who recommended this pharmacy) know about the problems we've had.
Meanwhile, Sophie's rash is back, probably because she was out in the sun yesterday. I put sunscreen on her before she left for school, but maybe it's the heat or UVB instead of UVA rays causing the problem. We put her back on Atarax and will hope that makes a difference. She'll be home today until after her 10:00-11:00 dose (the doctor said we can back up the dose one hour at a time). We ordered cupcakes to take to her class this afternoon, so she can celebrate her birthday with her school friends today.