T+41: Eureka Moment?

Wednesday evening was terrible. Poor Kay was so sick, the whole evening. Starting around 6pm she was sick a couple of times through to 9pm. From 9pm through to 11pm she was constantly retching, having more nothing in her stomach to bring up. The only thing that she did bring up was any medicine that Marion tried to give her. This is a big problem since it is essential to keep a stable concentration in her blood of two of the drugs that she needs.

I sat with her constantly from 9-11pm and I felt terrible and increasingly worried at what her body had to cope with. She was shaking from tip to toe, in pain from her stomach and practically begging to go to sleep. Everytime she tried to sleep she was hit by another bout of nausea and retching within minutes. Heartbreaking.

We tried various tactics to try to calm her system, including giving her an anti-sickness drug. But her tummy could not even hold this down. She did however find a posture that allowed her to retch without throwing up the NG tube. This meant that very fortunately it was not necessary to add to her suffering by making her swallow the NG tube again.

At 11pm I decided that enough was enough and I phoned the hospital. Within a few minutes I was called back by the duty oncologist, who also happened to be the head of the transplant group. I explained Kay's situation to her. She felt that the situation was not serious enough to require admitting Kay. She told us to stop her NG feed, water it down by 50% and then run it during the night at a rate that would merely ensure that Kay remained hydrated. Since we had an appointment with her the next day, Thursday, she said that she would review the situation with us then.

Once we change Kay's feed & hydration she rapidly fell asleep, though whether that was just coincidence I can't say. However watering down her feed gave Marion and I an idea: when we considered it, is seemed to us that Kay's nausea began around the time that she became dependent on being fed by tube. We had previously commented on how much the particular feed that Kay had been given stinks - worse than baby food even. We started to wonder whether the problem might, to some extent, be related to the type of feed that she was getting.

Next day Kay was checked thoroughly by the oncologist. Disappointingly she'd lost 0.5kg weight in four days, which essentially means more lost muscle tone. The super news was that her white cell count was up to 2.6, roughly half way back to a normal level. Her red cell count was still slowly dropping, but posed no problem. Her platelet count was 13 and very border line. The oncologist thinks that her system is starting to produce platelets and was initially reluctant to give Kay a transfusion. But when she considered the matter further she decided that the chance of Kay having to swallow the NG tube again was pretty high and a low platelet count would increase the risk of a consequent hemorrage. So a transfusion was ordered.

I put our idea about the NG feed to her and she thought that we could be right. So she arranged for a dietician to call Marion and discuss the subject. The result was that they agreed to change Kay onto a type of feed that she'd had last year and that had worked just fine. In the meantime we have the idea that Kay's nausea has decreased dramatically, although not gone away. The remaining nausea seems to be directly related to her medication and we feel that it's a bit easier to control.

As a result of all this, Kay brightened up almost immediately. As we left the hospital she suddenly said that she was hungry (!!!) and that she fancied an ice cream. I didn't need to hear this twice and so she chose a "Magnum" from the hospital shop and ate three quarters of it in the back of the car on the way home. When we got home we even bashed a hockey ball around in the garden for a few minutes before tiredness caught up with her.

She really has lost a huge amount of muscle tone and is very weakened from everything she's been through. But we're now hoping that we have found a way to reduce the nausea and that we can start to think about rebuilding her strength.