11 September 2012

Perhaps if we give it a fancy name...

... "hiatus from home" maybe... it'll make this admission a bit easier to swallow.

In my last update, we were still looking at returning to Windsor by the end of the week.

The end of last week, that is.

We are still here.

Brigid did manage to get a new PICC line on Thursday.  According to the radiologist who placed it, the largest vein in her arm (the best for placement of a PICC line) is "gone", so he had to use one of the 2 remaining smaller veins.  One of the biggest challenges with any sort of central access is that it damages the vessels.  When a line has been in place for an extended period of time, the vessel it is in becomes damaged and is rendered unusable for future placements.  Because of this, the number of placements is finite.  In plain English - we can't play this game forever.  It is not impossible that Brigid could run out of places to put central IVs before she is beyond the need for them, and that could be disastrous.

Friday morning, the Senior Resident called Windsor and told the doc on rotation there that they were going to gear up to send one of their patients back so she could complete her treatment closer to home.

The response that she got, after the doc in Windsor asked who it was and was told it was Brigid was "not today".  No question of her condition, no inquiry about how she was doing or what they had found... just "not today".

A little disheartening, to say the least.  I had checked out of RMH, had everything packed up and ready to go.  I wanted to take my princess back to her kingdom, closer to her castle.  Instead, I had to go back to RMH, beg another room, and settle in.

HOWEVER... it might have been for the best.

Shortly after this conversation occurred, they FINALLY got the ID on the bug(s) that had been making Brigid so sick.  When the big gun antibiotics were used to knock out the bacteria in her bloodstream that took Brigid to the hospital in Windsor, they knocked out all the bacteria in her little body, which allowed some pretty vicious opportunistic fungi to take hold.  Brigid's blood was not positive for one, but 3 different yeast species.  One is pretty common, the second rare, but she has had it before, and the third... well, it is NASTY.

Not only is it nasty, but it is naturally resistant to (and actually made stronger by) the most gentle anti-fungal medicine.  The second bug meant that the next less toxic medicine could also not be used as they don't interact well at all.  3rd one was out too, as it would not cover all of the bugs.

That left us with Amphotericin B.  A drug so nasty that it has a big, ugly black box warning and has earned the nickname "Amphoterrible".

It is living up to its reputation in Brigid.  Her heart rate is routinely dropping into the 40s, her blood pressure 70s/30s.  Her liver enzymes are rising by the day, it is suppressing her bone marrow and it makes her feel awful.  It was so bad on the first night that the medical team held the second dose so it could be administered during the day with the medical team handy to supervise.  It has necessitated several "middle of the night" ECGs, many calls at 3 am to the docs, and what seems like a global rise in the "oh, crap" factor.

With that said, this awful drug has also led to her first negative blood culture (remember, negative is good).

It also means that we cannot go home.  Not until the end of the course of meds - 6 weeks.  It had been bandied around, but this morning it was made official.  Because they cannot rule out endocarditis (an infection in the interior of the heart) and Brigid cannot be without her central line (pumping the exact stuff that fungus considers quick and easy food into her bloodstream 24 hours a day) she has to be treated with a long course of all the meds she is on - she must be on them for 6 weeks from the day first clean culture was drawn, which means that barring an act of God, Brigid will be inpatient here in London until October 19th.

We can't take her back to Windsor because of the rotation of docs there.  Some of the doctors who cover a weekly rotation are not comfortable with the degree of complexity that Brigid presents.  I respect that - I would rather have a doc say "this child's needs are beyond my scope of practice" than take her on and try to muddle through.  If the doc this week says "sure, send her home" and the next doc says "this child is not adequately supported here and needs to go back to London" it would be exceptionally disruptive for Brigid. At least this way, she can have her new line placed before she comes home (which we would have had to come back for anyhow) and we have a predictable length of stay, we're not just going day to day.

However, essentially maintaining two households for 2 months is going to be difficult.  By the time Brigid finally gets home again, we will have been away for 54 days.

I have been asked by many friends on Facebook if there was anything that they could do.  First and foremost, Brigid LOVES getting mail.  The hospital has a free e-card program - if you would like to, you can follow this link and send her an e-card.  Her room number is B6-118 at Children's - name, of course, is Brigid Kidd.

As well, as much as I hate to say this, maintaining 2 households for 2 months is not cheap.  Paying for Ronald McDonald house, groceries, gas so Daddy can come to visit, incidentals here and there... it all adds up, and quickly.  If you are moved to help out a bit, there is a PayPal donation link on the top right hand side of this page.  Prayers and well wishes are always appreciated, too.  Please keep Dale and Reggie in your thoughts - this is quite possibly harder on them right now than it is on me... I can't imagine being hours away from this all going on.  Life goes on - Reggie started high school,  Dale is busy at work, and here we are - a house divided.

If you would like to contact me personally, you can email me here... If I don't get back to you right away, please be patient.  B has to come first.


1 comment:

  1. Always amazed at how much you know about the medicine. I hope your little girl feels better soon and you both can go home again.