- Wake to the sound of a seizure at 5 am, a guttural moan and rattling, and run/hobble to patient's bedroom to assess situation
- Administer large dose of CBD and CBDa via new protocol
- Think who lives like this? while making sure patient is comfortable. Question pertains both to patient and caregiver
- Turn on light (essential rule for those who struggle with psychosis in early morning hours)
- Drop essential oil Frankincense into palms of hands, cup patient's nose for several seconds, caregiver's nose and then massage patient's feet
- Recite secular prayers and pretend to administer Reiki
- Note that second seizure does not happen, a small improvement from previous days
- Change diaper and notice that hydration might be necessary
- Worry and wonder
- Contemplate whether hydration might be necessary in hospital as patient slept most of previous day, having been drugged into oblivion because of too many seizures
- Think who lives like this? as pertaining to patient. Curse wisdom teeth, so ridiculously named.
- Text friend from East Coast who emphasizes importance of hydration.
- Contemplate which hospital to take patient to for hydration, drawing upon 23 years of experience in caregiving
- Contemplate waking College Boy or Brother to drive patient and caregiver to hospital
- Contemplate the various pros and cons of hospital admittance
- Read text from friend: Take her in
- Continue contemplation of big city hospitals, private insurance and who takes MediCal as secondary
- Curse the American health care system to ward off financial fears
- Retrieve large syringe used to administer pharmaceuticals, bottle of cold Pedialyte from fridge and towel
- Sit at patient's bedside and carefully syringe 5 ml of liquid into patient's mouth until 8 oz is down the hatch.
- Help patient to cough up mucous with newly purchased $369 portable home suction machine
- Think who lives like this? pertaining to both patient and caregiver throughout home hydration
- Lie next to patient and gradually realize that patient is not seizing like she had in previous days, has drunk an appropriate amount of electrolyte-balanced liquid and is resting peacefully
- Rest peacefully next to patient while College Boy and Brother sleep unaware of caregiver and patient drama on other side of wall
- Rise from patient's bed at 7:00 am, make coffee for caregiver and oatmeal for patient to hopefully eat later. Sip coffee and contemplate the universe
- Bring patient 8:00 medication and coax another 8 oz of liquid into patient's mouth.
- Note, again, that no seizures have occurred
- Think who lives like this? while planning a trip down to Santa Ana to visit a dispensary that has a good stock of CBDa. It's called Fiddlers Greens.
This has been a Public Service Announcement.
* The "wisdom" teeth are so-called because one is presumably wiser when they appear in late childhood, early adulthood. I call bullshit.
#6....same.
ReplyDeleteI hope Sophie is able to hydrate better today. Do you ever give her coconut water? We have switched to using that for Max instead of pedialyte because it seems to do the trick quicker.
"...pretend to administer Reiki."
ReplyDeleteOh, Elizabeth. From the depths of the depths you pull up the sharpest and most colorful of words for us.
May the seizures continue to abate.
Love to you, brave one. Love to your girl.
ReplyDeleteNo words. Just love.
ReplyDelete*contemplates visit to pretend Reiki practitioner*
ReplyDeleteI do so hope the lessening continues. I hope today is better than yesterday, and tomorrow better again.
"Who lives like this?", indeed.
ReplyDeleteI call bullshit too. Love to you and Sophie.
ReplyDeleteXoxo
Barbara
That's an exhausting list... nobody should have to live like this!
ReplyDeleteI hate this list, I hate that you have to do this, I hate that you need to write this down.
ReplyDeleteYou all deserve a life way way way beyond this.
I am always amazed at how you do it: convey to us the shittiness of the situation but with humor.
ReplyDeleteI'm so glad Sophie is emerging from this ordeal and without hospitalization, thanks to your superb caregiving.
Meant to respond to the identity of the anasthesiologist: Wow!
As well as to that poem, The Thing Is: i loved it; every word spoke to me.
The shitshow is well named. Hugs.
ReplyDeleteYou did the right thing by keeping Sophie out of the hospital. Every admittance was a setback for my kid.
ReplyDeleteWhat agony trying to assess whether or not to take her to the hospital. Especially when she is resting peacefully. So much shit can/does happen at hospitals. Good job on hydrating her and keeping your shit together.
ReplyDeleteYou are right to call bullshit, on so many counts.
ReplyDeleteI know what I know because of you. You’ve taken me and my heart right along with you in the time soothing and treating Sophie to thoughts of waking the brothers, to reaching out to friends and letting your Tiny Mother Mind’s intuition to act. You are one fierce woman and mom. In that way, Sophie is lucky.
ReplyDeleteSome days — many days — there are no words but yours. “Sending love” seems ridiculously insufficient, but it’s all I have.
ReplyDelete