Bad start but a great week

On the evening of Sunday, June 5th, Rachana’s temperature reached 101.6 with the ear thermometer, while the mouth thermometer showed 100.6. We are instructed by the doctor to call their 24 hr line if the temperature crosses 100.5.  I called the line and the doctor advised us to go to the Emergency as soon as possible. He said there could be a lot of reasons for the fever and some of those can be life threatening in her situation and has to be managed with urgency. We now have a bag ready to go in which we put a few clothes and  drove to the hospital.

The emergency desk was expecting us and checked us in immediately. A few nurses attended her and started tests including, ECG, Blood test, Urine test and X-rays. At the hospital the temp was 100.9, she was feeling cold and her neck was stiffening up. The neck was hurting and locking and I felt she was a little disoriented. Later Rachana said the she could see that I was afraid and shaken up when her neck stiffened. She’s right, I was shaken up a bit when she was unable to move her head and looking straight through me. They gave her morphine after some time and that calmed her down. Initially they didn’t want to give anything for the pain until they had the blood drawn and done some initial tests. They did a blood test drawing blood from the port she has in her left arm but also wanted to draw directly from the veins in the other hand. We explained that typically the nurses have to take multiple tries as her veins are tiny and anything they can do to avoid pain will be great. They understood and got a machine which was like a ultrasound with which they could see in her arm and guided the needle easily into the vein. That definitely helped. She was settled down in about 1.5 hrs. All initial test came out negative but they started her on antibiotics through the IV and got a room ready on the BMT floor. We went into the room and it was a familiar routine as we had been there a few times. The BMT floor is isolated as most patients are Neutropenic (low White blood cells and low ANC counts) and can catch infections easily. She had a few more drugs later in the night. By next morning she was looking good. The fever was gone, the neck was normal; back and tummy aches were the only concerns. They gave a unit of blood as her counts were low and told us we’ll be there for one more day until they make sure the back and tummy ache were nothing serious. An MRI of the back didn’t find any unusual. The gave her scheduled chemo dose on Tuesday and sent us back home that evening.

Rough Sunday but the week ended well. She started feeling good Thursday onwards. Her numbers and general health have been great in the last 2-3 days. Thursday was the first day she went up the stairs at home. She spent some time in the backyard, played with the kids and cooked a little. The last 2-3 days have been the best days in the last 2.5 months and she continues to feel good. We have no chemo next week so my prediction might come true. I don’t want to jinx it so I’ll leave it at that.

I spoke about medical error before and I’ll repeat it again. This time it was an oversight, but a reminder that when undergoing treatment we should keep track of what is being done, what medications are being administered and their schedule. About a month ago the doctor had told us to stop an antibiotic tablet called Bactrim and as a replacement she started us on a inhalation thing called Pentamidine that was scheduled once a month to be administered in the clinic. The reason was the thinking that Bactrim was perhaps pushing her ANC down. Perhaps an oversight but this was not recorded in the system and when we got out of the hospital they instructed us to take a bunch of meds, which included Bactrim. Obviously we questioned it and also found out that the monthly Pentamidine dose was not scheduled in the system. We spoke with the nurse in the clinic and got it corrected. Perhaps the error would have had no impact, but we have no way of guessing how important a drug is! It’s a prescription drug and not an off-the-counter for a reason! Yes, anyone can make a mistake so watch out and double check. But having said that, I will also say that nursing, by definition, is a job that is defined by compassion and Rachana’s nurses have shown plenty of it. It’s easy to be caring to a stranger for a few minutes, but try that for 8 hrs a day, 5 days a week. You can’t fake it. Her nurses have been careful, caring, considerate, and genuinely concerned.

If you haven’t joined a registry, please do it now and save a life