Scott has cried pretty much all morning. The pain is very bad in his back and starting to take hold in his jaw too. The tylenol w/codeine works for only an hour or two and I must give at least 4 to 5 hours between doses. It is unbelievably distressing to not be able to take his pain away, to see him clock-watching, waiting for the next dose of short blissful relief.
I am kind of mad today too. I just learned (from a leukemia forum) that the reason for his tummy issues could very well be due to the pentamadine he takes monthly to prevent infection in his lungs. I am mad that I didnt figure it out myself but pissed too that no one at hospital, after me raising it several times, made the link. It may well be something Scott simply has to deal with since he needs this treatment, but I have been worrying myself silly as to what the cause of his problems could be. I will mention it next week and possibly ask about reverting to Bactrim. Dapsone is out of the question as he developed methaemoglobinemia, a very dangerous condition.
I am also angry that whilst this is the supposed "easier" phase of treatment, it has not turned out that way for Scott. I can look back at photos from last year and see a very sickly looking child with a white face and bald head, he looked pitiful. Yet he never had the pain then that he does now, nor the constant diarrhea. The reason for my anger is not self pity but that he is expected to go to school or at least be staying on track as any normal healthy homeschooled child. Basically as soon as homebound was withdrawn it was a case of "off you go now, get on with it". There is no way in hell Scott is capable of going to school so this was dumped on us. We are NOT educators yet we have no choice and it scares the hell out of me as we are probably making a complete arse out of teaching him. On good days we get some work done but on the days like today (which is 1/3 of the time) he can barely string a coherent sentence together let alone write an essay on the Industrial Revolution. A little help would have been appreciated.
Dont get me wrong, I do love our hospital. The doctors and nurses are incredible, all adding different talents into the collective pool. One of the doctors in particular is a genius and has my utmost respect. I think I just need a lifeline right now. I am sinking.