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JOURNAL ENTRY: Day 38 through 46: June 25 – July 3 , 2011

July 3, 2011

Post Cytoxan Day 10 through 18

Waiting & seeing is not one of family’s strong suits – we tend to get twitchy with lack of direction. Yet here we here, still waiting to see how things are going to work out with Queenie. Things are frustrating & stressful here to say the least.

Queenie is still in the hospital. We think she may be having yet another exacerbation (although this could be the continuation of the big huge one that started in April, we can’t be sure) – right now it’s the best place for her to be if that’s the case. At the very least there they can get tests done, administer steroids if needed and monitor her breathing (they FINALLY got her a CPAP – too bad she’s too nauseous to use it). What they can’t do, though, is the intensive therapy she was getting in rehab. As I said in an email I sent to her Case Manager “Every day she is without therapy is another day she is moving backwards”. We can tell the difference in her speech, her lack of movements, her fatigue…everything.  Her sight is awful again & combined with dizziness, is nauseating her, which in turn is making any kind of therapy difficult. Also, the room she’s in is teeny tiny and it’s tough to really do anything.

I’ve tried this entire week to get things moving along, to get her back into rehab. That’s been tough since I can’t be there in person to persuade them (those who know me IRL know that my particular brand of charm works best face to face) so instead I’ve phoned & emailed with little positive response. The straw broke the camel’s back late on Friday when both the acute rehab where she WAS staying  AND the sub acute rehab that we were trying to move her to BOTH declined admission. Since it’s a holiday weekend, we are now yet again in a holding pattern until Tuesday when the Director of Admissions will be back in her office – I plan to be her first phone call of the day and don’t plan to stop calling until I get the answers I need.

Treatment-wise, we’re not sure of our next steps. Her neuro is out of town until Tuesday (that little bit of information took me 3 phone calls to find out) but the neuro on call has ordered an MRI for Tuesday morning to see if there’s been any further lesion growth – this will tell us if the Cytoxan has worked or not. Right now, Queenie is refusing further doses of it but she is open to steroids or IVIG infusions as both of those have worked for her in the past. We’ll see what happens come Tuesday.

This past week has really put our family under the gun. We’re starting to realize that hard decisions are looming – will Queenie, even with loads of therapy, even be able to come home? We simply don’t know but we’re making some long range plans that, while they’re tough to face, have got to be made. I don’t like thinking about our home without Queenie in it but the cold hard truth is that this will probably be the case sooner rather than later. We miss her.

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