Last update - we had just found out Brigid had a fungus in her bloodstream. The last time she had a fungal infection (specifically, yeast) we advocated rather vocally to keep her in Windsor, as we felt it was well under control and that her care could be managed close to home. Fortunately, after a bit of "gentle persuasion", the team agreed, and she stayed at home.
She recovered quickly from that infection - kicked the fever within a day or so of starting on an appropriate antifungal medication, had her line changed, and was home before Christmas. I guess that was a gentle introduction to the "fun" that is a fungal infection... but the reality is that an infection like this is a beast.
This time, we were approached with the opinion that Brigid would be best cared for in London - and they got no argument from us. After 48 hours on antifungals, not only were we seeing no improvement, she was deteriorating. Her blood pressure was uncomfortably low, her temperature, breathing and heart rates uncomfortably high. So, on Sunday, without a lot of notice but for darn good reason, she was transferred to London and took up residence in the Pediatric Critical Care Unit.
I, on the other hand, took up residence at Ronald McDonald House... thank goodness it exists.
In the big picture, she is improving. She hasn't had a fever since Monday and graduated out of "The Unit", is receiving 2 fairly strong and targeted antibiotics and a broad spectrum antifungal, and her bloodwork is normalizing.
However, in order for us to get this far, we HAD to try and put our trust in the hands of strangers and believe that they were as interested in this ordeal being gentle on our daughter as we were. More importantly, we HAD to allow them to remove her lifeline... knowing full well that doing it brought risks of its own. Her PICC line, the IV line through which she has been receiving her TPN for the last 8 months (the most recent in a LONG series of central venous access devices) was the most likely reason that she was not improving and HAD to come out. Not only did it have to come out, but to reduce the risk of her becoming reinfected, she had to remain without ANY sort of central line until there was at least one negative blood culture.
Even more tricky - something we just learned today - was that she was not fighting just one yeast strain in her blood, but two. One is C. parapsilosis, most commonly seen in patients on TPN or those with compromised immune systems, and the second... well, they don't know what it is. We are still waiting for an ID.
So... we allowed the line to be removed. In order to try and keep her blood sugar high enough to keep her safe, she requires 2 peripheral IVs with dextrose solution running though them... and keeping them intact has proven to be our biggest challenge. On Sunday, under sedation, it took multiple attempts to get those 2 lines in. She ended up with one in her foot and the second in her hand. Once they were in and running, the next step was to pull the PICC line. Her fever was reduced within 2 hours and was gone entirely a little more than 12 hours later... clearly, trusting the docs, while exceedingly difficult, was the right thing to do.
HOWEVER... those IVs, critical as they are, are NOT behaving. Brigid has exceptionally fragile veins, and for as long as we have had to subject her to IVs, this has been a problem. Since Sunday (3 days, if you are counting), Brigid has endured 33 IV placement attempts, resulting in 7 IVs that were actually usable and 26 blown sites. The first line she lost was Monday afternoon in her right hand. Within minutes of losing it, her blood sugar was in the "moderately hypoglycemic" zone and dropping (with one IV still running). The one that replaced it blew within 2 hours and was replaced after a few tries. Next round of excitement had her lose BOTH IVs.
Now, imagine this.
Brigid has the spirit of a warrior, and the fight to match. She has been known to require 4 adults to hold her down when she has decided that the procedure in question was not something she wanted to cooperate with. I held her as the venous access nurse, then a NICU nurse turned doc, then 2 nurses from the PCCU and so on tried and tried to get an IV into this little girl. I heard her pleading for "no more slivers" become more and more slurred. I felt her weaken as her blood sugar dropped and her fight slipped away. I watched as attempt after attempt ended in looks of frustration and despair on the faces of the professionals working on our precious princess. I saw her eyes roll back in her head as she gave up.
For over an hour they worked, and finally, after what seemed more like a year than an hour, they had 2 IVs in again.
For over an hour, for the first time in almost 5 years, Brigid had no IV access. The IVs that I have cursed time and time again - those which I secretly wished would disappear were gone. But not how I wanted them to.
And I got a swift kick square in the "perspective".
Do I dislike that Brigid needs IV access? More than there are stars in the sky. Do I yearn for the normal life that Brigid might have had? Of course. Will I ever wish it away again? Not as long as I draw breath.
They say "be careful what you wish for". This has been a very graphic lesson indeed.
The plan from here forward is not linear. First, and foremost, we need to pray for a continued clean culture (clean at 24 hours, so far). We need to hope that the Interventional Radiology does not need to bump Brigid's scheduled PICC placement tomorrow at 2. Brigid needs to be seen by cardiology and ophthalmology to determine the spread of the fungus throughout her system, since it has a nasty habit of setting up shop elsewhere and causing havoc. We need to determine what the other bug is, how to treat it, and what to do to reduce the chance of this happening again. We need to get her back to Windsor, continue treatment, and return to London in a month for the placement of a more permanent tunneled central line.
That just about covers the physical recovery from this experience... the emotional is going to take a whole lot longer...