22 September 2012

I try not to count days

but the knowledge of how long we have been here does tend to creep into my head from time to time.

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We took Brigid to the hospital in Windsor on August 26th.  On September 2nd, after trying valiantly to get on top if the infection at our home hospital, the docs felt it was best that she be transferred to London for treatment.

7 days

After arriving in London on Sunday, it took until Friday before the microbiology lab was able to identify the specific bug(s) that were hiding out in Brigid's bloodstream and determine the best way to deal with them.

6 days

Once she started on treatment, the final decision for the length of treatment for Brigid that best balanced the likelihood of clearing the line against the negative effect of the drugs themselves told us basically how long we would be here.

28 days

I spoke to the doc a couple of days ago in a last ditch effort to see if they might consider transferring her to complete treatment closer to home.  I was told that because of how unstable she had been at the beginning of treatment - though she has shown significant improvements, she still has a way to go to return to baseline - and the fact that they want to replace her line as close to the end of treatment as possible (it is being done on Day 27 of therapy)... heck no.  Well, I think I might be paraphrasing that one a bit.

Still 28 days

The team doesn't feel it would be prudent to discontinue the meds and show Brigid the door right away, so she will be here for an additional 24-48 hours after the therapy is complete before they are comfortable allowing her to return home.

2 more days

So, if you are doing the math... that makes 43 days.  Just over 6 weeks since Brigid has seen her bedroom, her toys, her "castle".  When she was admitted, we were in 85 degree days and running the AC, when she comes home, it'll be long sleeves and the furnace at night.  We have watched the calendar turn over 2 months "on the inside", missed Daddy's birthday, the first day of school for the 5th year running, the entire first month of school for the second year in a row, the first day of fall.

In 2011, Brigid spent 127 days inpatient, in 2012, we are quickly approaching 100 and are only in September.  These are days right out of her childhood, time that is not given back.  They wear on the whole family, shift the balance in the house completely, and do a number on her.  Not only that, they are costly.  We pay for RMH, food, gas so that Daddy can visit, extra expenses at home because I am not there... not to mention the incidentals that are bound to crop up... this time around, I was expecting a short stay (we were told "a couple of days" when she was shipped out) and brought a backpack... that is it.  One spare set of clothes, Brigid's meds, my computer... and that was all.  Needless to say, you can't go long on that little, so... more expenses.

Some of you have been asking what you can do to help... I did have a donate link at the top right side of this page, but some generous friends who offered to help told me it was not working.  A dear friend of mine took over a ChipIn page I set up for something entirely separate and has made this page for Brigid.  There is a direct link to donate at the top right of this page now, as well.

If you can help, or if you would be willing to share this link with your friends tweet it or post a widget on your own blog, we'd really appreciate it.  Your thoughts, prayers and generosity are what has carried us this far, please keep on keepin' on.

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