Sunday, October 27, 2013

(posted by Greg)

In the last.week Monica's condition has taken another turn for the worse. Last Sunday, she had a seizure and as a result (or as a result of the medicine), she was asleep and difficult to arouse (pretty much like a coma). The Homecare nurses put some "ports" in her arms so that I can continue her steroids and so that I can give her medicine for pain or to relax her if she has another seizure.  Because of the way that she was sleeping and the sound of her breathin,  I was quite worried that she would pass very soon. So far Monica has not had any further seizures and does not seem to be in any pain so we have not had to administer any of these other medications.

On Monday evening Monica opened her eyes and seemed to be aware. On Tuesday and Wednesday she was quite awake although not really responsive. Thursday and yesterday she was asleep much of the day again. So, there is considerable variation day to day.

I have had quite a bit of help and support through this last week.  Monica's mother and brother have been visiting throughout  (Oma came in by bus and skytrain on Thursday to be with Monica and to help as much as she can) and on Monday they brought along her Aunt. Marley took time from school on Monday and has been at home as much as possible. Jesse's girlfriend spent Monday evening with us as well . The Homecare nurses have increased the frequency of the their visits (coming twice a day when we were most worried).and have been very helpful. The Homecare workers continue to come in twice a day and, although I have cut back my time in the office to next to nothing, I still have homecare workers from Nurse Next Door come in for the afternoons on weekdays to help me as required.

The big changes which, I think, don't bode well are Monica's breathing and her ability to swallow. She is having real difficulty swallowing. So, because of the risk of causing her to choke, we are limited in the types and quantities of foods and fluids which we can give her. As difficult as this is to think about or to say, I am acutely aware that her time with us is limited. (Mind you, she continues to surprise me with her strength and will to live.)