Kay has just been turned on her back for an ultrasound investigation of her organs. The concern is that an asparagillis infection can spread itself throughout the body and form 'lumps' of infection in the organs, eyes and brain. An investigation of her eyes/brain is not possible at the moment, eyes because her eyelids are too swollen to open, her brain because she's not stable enough to move for a CT scan.
The doctor has told us that asparagillis is pretty tough to fight and that the fight will take a while. I said that we had no intention of beating the record set by the boy we saw last Monday, which was five weeks in IC. The doctor's response was that we had no choice, that we could expect Kay to remain in IC for at least five weeks. She literally said that we had to hope that Kay's stay in IC was at least as long, shorter wouldn't be good.
I'm still trying to get my head around this idea. One week here already feels like a lifetime. And then there's everything else that needs attention, Lauren's schooling, work, home, bills, etc, etc. We need to start getting ourselves organized for another long stay.
Good news is that Kay's kidney's are starting to do more work and that generally she's a little bit stronger. But these are all IC relative terms.
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Hang in there everyone.
ReplyDeleteSending love and hugs over the ether.
Linda x
Lieve Marion en Rob,
ReplyDeleteHet wordt nog een lange zware periode voor jullie. We kunnen helaas niet jullie "taak" voor even overnemen, hoe graag we dat ook zouden willen doen. Weet in ieder geval dat we ieder uur, iedere minuut en iedere seconde aan jullie denken. Aan Kay maar ook aan Lauren en Nattie. We hebben enorm veel respect voor jullie. Dikke kus voor jullie allemaal.
Joost en Miranda
Dear Rob and Marion,
ReplyDeleteThank you for the update. We are very sorry to hear about a potential Aspergillus infection, that is bad news. It sounds like your waiting game is going to go on for some time and you will have to find a way of living parallel universes once again.
We don't know how you do it and don't know what to say except that we are thinking of you and try and take care of yourselves.
With love
Sam, Martin and family xxx
Dear all
ReplyDeleteA whole week on and you are still in no mans land but we can all see that your brave little Kay is fighting to get back to you so keep holding hands and staying strong. You continue to amaze and inspire us all.
Love and hugs
Lynne,John,James and Emily
I only had to be in IC with Liam for a few days and that was long enough. I must admit I was more afraid when he went into high dependency because the level of care wasn't as high and the one to one nursing had been like a security blanket.
ReplyDeleteYou could do with a pause button to slow down everything else like bills, school etc. but I suppose that gives a little taste of reality in this surreal world you're in at the moment.
Lesley x