Well I wrote a 5 page diatribe on the past few weeks and realized it was idiotically long. Here's the Cliffs Notes version:

In November I relapsed, in December I started IVIG and TPN again. Last week my second IVIG infusion caused what we are hoping is Aseptic Meningitis (a very rare side effect - sounds right up my ally) after the "we just want to cover all our bases" Spinal Tap (Holy Hell... "some discomfort" is apparently doctor speak for 'it'll feel like we're cutting you in half with a chain saw - then the real pain will start'). I will never shed the guilt I now have over allowing them to do this to my 13 month old baby without any sedation or pain meds... My heart will always ache when I think of it. Don't allow your child's doctor (or yours) to talk you into an unsedated/unmedicated spinal tap if your child (or you) can tolerate the sedation meds - it takes all of a minute longer and some closer observation for a few hours but it's humane. I HAD sedation and it still cleared my pain scale (this from the girl who watched as her surgeon performed a deep-thigh muscle biopsy!). Barbaric.

But, as it turns out, necessary. The spinal fluid was a nightmare and was full of puss essentially, along with a bunch of other unwanted jumk. (lovely eh? pus-filled spinal fluid - excellent ice breaker).

Within hours I was diagnosed with Meningitis, admitted and the rest snowballed from there. (thankfully the spinal fluid did not have any visible bacteria, and the cultures grew nothing, it is assumed Aseptic Meningitis brought on by IVIG treatment. I'm an awesome date I tell ya.

All immune treatements were stopped until the meningitis started resolving. Thursday I had Plasmaphoresis (google it) and had a severe and terrifying reaction to the treatment... very nearly had a code called on me, spent the next 3 days violently and horrifyingly sick.

It's finally starting to improve, however my gut remains in full revolt. Haven't kept much at all down (including meds - compounding things) and rely on IV everything - fluids, fats, nutritions, antibiotics, antiemetics, narcotics, vitamins/minerals, etc etc - We wont know just how hard a hit my GI system took this go - we always seem a bit further behind after illnesses. Monday's goal will focus on alternatives to IV meds - or getting them covered.


We're working with Palliative Care to come up with an acceptable arrangement that keeps me at home. Hoping for things to improve once we have them on board (This is not Hostice care which focuses on helping people/families who are dying navigate the system in a manner that keeps their priorities on the foerfront; Palliative care is 'comfort care' - they focus on making patients comfortable and coming up with solutions that work for everyone... terminal or life-threatening/life-limiting diseases are all open to Palliative input. I'm hanging my hat on them.

Tomorrow will be a better day. It HAS to be.


Thanks for popping by - Family/friends, feel free to pass this along to others I may have missed!


~K

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