This round has been a bit rough for Jonathan. Whereas the first round went with relative ease, there are more side effects that are taking a little toll on Jonathan. I guess it all started last week when Jonathan had to get interleukin-2 (IL-2). During the week Jonathan had one or two bouts of vomiting and this was unusual. Even when we went by our cousins for the New Year - Jonathan had another two to three bouts of vomiting with multiple occasions of feeling nauseous. It wasn't until we checked back into the hospital this week that I confirmed that one of the side effects of IL-2 is nausea. So now, Jonathan is on round the clock Zofran and Benedryl to help with the nausea.
To complicate things, his treatment this week included getting IL-2 AND ch14.18. So now Jonathan has to deal with the pain that comes with getting ch14.18. At least this time the medical team has decided that they wouldn't ramp up to the highest dosage - 20 ml per hour - but instead stay at 15 ml per hour. Everytime they ramp up to 20 ml per hour - the pain becomes to much for Jonathan (even though he is on morphine) and they have to end up dropping back to 15 ml per hour. There is no real disadvantage to using the slightly lower dose - other than the delivering of the medicine takes longer. I think the real risk with ramping with ramping up to 20 ml per hour is that the amount of morphine he needs causes his blood pressure to drop / plummet so besides having better pain management, the medical team also don't want to deal with the blood pressure issues as well. Unlike the previous cycle - in this cycle he has also been having round the clock fevers - another side effect of his treatment. To make matters worse - his NG tube came out over the weekend and with Jonathan's reluctance to take any medicine orally - it's been a real challenge to get him to take his Tylenol.
I know I've also been reluctant to have him on his NG tube and though I was delaying putting it in on Monday - by Tuesday night I wanted it back in - because we needed to get his fever under control (at least from a pain management perspective). The problem was that on Tuesday night Jonathan had some nose bleeds so by the time we tried to put the NG tube back in we ran into problems. The first problem was that we had difficulty getting the NG tube in, and when it finally went in, Jonathan got into a coughing fit and was coughing up 'a lot' of blood. In the end we ended up pulling back out the NG tube. We suspected that there might have been a blood clot in his nose - hence the difficultly / resistance experienced with putting it in and the subsequent bleeding that followed.
Since then I've been reluctant in putting it back in but I have asked Jonathan on two occasions whether he wants the NG tube put back in and he has said no - both times. I am a bit surprised to get the no response but I suspect it is due to the last experience and also because he is weak from the fevers. Plus not getting any nourishment surely doesn't help either. The only consolation I have is that we just have today (Thursday) and tomorrow and then the worse will be over - at least for this round.
The last bit of excitement for this week is that Arielle got sick on Monday as well so we've had to drop her off by one of Gabby's friends. Fortunately, Arielle has been recovering nicely and I'm just looking for this week to done.
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