Wednesday, 25th November

It's a week since Jimmy was discharged from hospital and as he gets stronger everyday I realise just how much he has been through in the last month.

Since Sunday he has not been breathless anymore when he talks.  Up until 2 days ago he was even too weak to open a juice bottle.  He has been very good about going for a walk each day.  We have far too many steep hills in our neighbourhood so he has been doing 10 laps of the driveway twice a day and since yesterday he upped this to 12.  He has also been working from home this week.

We had our follow up appointment with Prof Novitzky this evening and he is extremely happy with Jimmy's progress.  He was originally booked off until the 5th of December but Prof has said if he feels up to it he can go back to work during next week with instructions to listen to his body.  We now, as a matter of routine, take Jimmy's temperature morning and evenings so that nothing like this can spring on us again.  Jimmy had the second half of his Polygam infusion today which took 4 hours.  He will continue to have this on a monthly basis but at double the dose so we looking at about 7 hours a time and he can't drive afterwards so I guess I'll be getting quite far with my new crochet blanket I am making.

Prof has decreased Jimmy's cortisone dose down to 7 a day and stressed again that Jimmy needs to get off cortisone as soon as possible.  His platelet count is 60 at the moment.  Prof says he is not too concerned about the numbers at this stage as this is common with Thrombocytopenia (low platelet count).  His big concern is that Jimmy doesn't get any of the side effects of Thrombocytepenia which is bleeding etc.  He will have to continue to have his bloods done once a week so he can keep an eye on this as Jimmy's platelet count cannot go lower than 30.  We spoke again about the Splenectomy and although Prof says we are assured a 85 to 95 % success rate of an increased platelet count, it worries him that Jimmy will not have a spleen when he comes out of remission.

So today we discussed a medicine called Nplate.   Nplate injections are used on a monthly basis to treat Thrombocytopenia and help prevent bleeding in patients with a blood disorder called chronic immune thrombocytopenia (ITP). This medicine is used when other medicines, such as steroids or immunoglobulins, have not worked well enough. (The Polygam that Jimmy is having monthly is an immunoglobulin).  Nplate works by stimulating the bone marrow to produce more platelets.  Prof is going to do a motivation for the medical aid and try get them to authorise it although he said we shouldn't get too excited as these injections are R60 000.00 a shot. Authorisation takes between 5 and 6 weeks. And speaking of dollars, we got Jimmy's ICU account today...R270 000.00.

There is much excitement at home this evening as Loren wrote her last matric exam today.  Another chapter of my life finished....I can't believe I have another baby spreading her wings.  We have been very busy with applications, references, medical tests etc as Loren is going to take a gap year and go and au pair in the states next year.  Emma writes her last exam tomorrow and then it's count down to the end of the school year.

My other news is that with all this stuff going on Megan finished her 16 day cross over from Europe to the USA and arrived safely in Houston on the 14th.  She does a 7 day cruise every 7 days leaving Houston on a Saturday afternoon and stopping at Cozumel Mexico, Belize City and Roatan and then back to Houston.  It's a bit more difficult to talk to her now as she is always 7 or 8 hours behind us.  I had a lovely telephone call with her a few days ago at 1am and it was good to hear from her and she isn't sounding as tired as she was when we saw her in Europe. Of course Megan is very happy to hear that Jimmy is so much better....it has been really tough on her not being here and worrying about him.  Thank goodness for technology with Skype and Face Time where we can see each other.