Day + 5 -- fever

Our clinic visit on Day + 5 was uneventful. Doug was getting a slight sore throat along with the mouth sores but nothing that alarmed anyone. His blood counts had fallen more, WBC 0.2, platelets 95, but again nothing that was not expected. He now is getting daily Neupogen shots to help kick-start new cell production.

However at 8:30 in the evening he spiked a fever of 100.6. We had strict instructions to call the clinic if he had a temp over 100.5, so I called right away. Got the answering service, blah, blah, finally the doctor on call called back. He said to go ahead and call Coram, the home health service and they would send a nurse out to start the IV antibiotics. OK -- except we did not have that phhone number. We had been given a "list of important numbers" but it did not include Coram. They had sent out to the hotel, back in the beginning, a "fever kit" which consisted of two large cardboard boxes, one containing a IV pole, and one a box of meds. We had not opened the boxes, thinking that there was nothing we needed until when and if the nurse came out. Finally it dawned on me that inside the box must be a number for Coram. So there I am, holding the phone and talking to the doctor with one hand and fumbling with a sharp knife trying to open the sealed box. Yes, there was a number inside!

So I got Coram's answering service and finally a nurse called me back. I knew that the fever meds needed to be started within two hours of the fever spike, so was getting a bit anxious. The nurse did make it to the hotel with 15 minutes to spare. He drew blood, which we are to take to the clinic this morning. Then he showed me how to mix the meds and hook up the line to Doug's central venous catheter. I had already learned how to care for and flush the lines so that part was really not too difficult. It was after 10:00 pm by this time, and the meds need to be given every 8 hours. So we were up early this morning to get the IV meds going by 6:00 am.

Guess I am venting to you all - not being able to find a phone number in an already stressful situation just adds to that stress. I will be giving feedback to the clinic today. Personally I think the doctor should call the home health service, not the caregiver. We have great respect for all the medical personnel but nothing is perfect.

Doug is feeling awful, as you would expect. Hope this is a better day.