It's Saturday morning - I am NPO and waiting to see the Neurosurgeon or hear about a surgery time.
The nurse reminds me that they said afternoon.
This pain is INTENSE.
They keep offering meds but I'm afraid of the reactions and potential liver stuff-
I've stopped the pain meds because of the allergic response- but- the head pain is NOT TOLLERABLE.
I start trying other options- the iv nausea meds to make me sleep-
❌ Allergic reaction 7?❌
Now I'm vomiting again, hunched over: In PAIN
MORNING ROUNDS
😎 Neurosurgery:
doesn't come
🤓Neurology:
comes to examine me
Discusses a one-time seizure event I had a year ago
States they want to start the seizure meds due to the MRI results/area of this lesion
I ask them to wait and consult 😎because my past MRIs were clear and I haven't had a seizure
👨⚕️Oncology:
confirms the plan to biopsy
Discusses potential need for the liver biopsy and order additional scans
Let me know that GI specialists are getting added because of my liver and stomach response.
💩 Gastroenterology:
come in to examine
Note my quadrant pain
Let me know they are going to watch my labs and plan accordingly
If my liver enzymes go down, they may just continue to monitor and scope my GI
They order an ultrasound
👨⚕️ Hospital Physician:
he's kind- this guy is listening
He's thorough and makes sure I have options for pain/even if I am not taking them.
He's honest:
🔥🔥🔥🔥PAIN🔥🔥🔥🔥
👩🏻⚕️A New-to-me
Neurosurgeon Nurse Practitioner :
tells me the plan is to biopsy Monday
WAIT- WHAT?!!!!?!??
Inside
He FUCKING said today!
THIS IS TOO MUCH PAIN FOR ANOTHER 2 DAYS!!!!
I've been through 2 days of allergies and my liver going nuts- they almost had me in the ICU-
WHAT THE FUCK happened?!?!!?
Out loud
🔥Me: I'm sorry. What? I'm NPO, because he said today.
👩🏻⚕️NP: I see that but he said the plan was always to biopsy Monday.
🔥: No.
Was there an emergency?
I get that it's Saturday but I can't do this anymore....
Ask M (His other NP) she was here when he said today.
He promised me AND my mom/family
can I do anything?
Is he going to come see me at least?
👩🏻⚕️NP: He may still come, they are doing rounds and are in the building, I know there are weekend schedule issues with staff and ORs. There are scheduled procedures getting moved.
MY SECOND 2 DAY WAIT FOR SURGERY BEGINS
The skull pain from HELL continues
Physically + Emotionally Exhausted
I transition into survival mode
I'm focused on coping with the pain
I keep taking showers
I find ice helps and ignore the docs who say avoid it because it's my only working option.
The pain gets worse and I knowingly take two more iv Dilaudid with the available Benadryl and nausea meds out of need.
I use each hour or two to sleep then wait for the neurosurgeon to arrive
❌❌❌ I just cope with the allergic responses
- the nurses rub my back and watch me puke.
In comes M-👩🏼⚕️ (Neurosurgeon 😎 feels close- but it's just her- and his second NP👩🏻⚕️)
Me: Oh thank GOD! Can we still do this today? I haven't eaten- this pain med game has to stop- I'm so sore....
👩🏼⚕️👩🏻⚕️: I know, I'm so sorry. He said it was not scheduled and the best option is Monday.
Me: is there anyone else? Who is this guy? He lied straight to my face and you were here-- does he have a Halloween party or something? If it were you, what would you do?
👩🏼⚕️: Honestly, he's the only one I'd go to. He is the best and is used to day-long surgeries and has good outcomes. He doesn't always come across that way -but he's amazing.
Me: Cool. But right now I hate him. Of course I want the best guy but right now I'd cut this out myself. Does he know I can't even take the pain stuff and nothing is working for longer than two hours? I can't even sleep. Tell me the truth- why Monday? Can't he do it Sunday?
👩🏼⚕️: There are no times available in the OR for Sunday and the plan now is for Monday in the afternoon. I know they're adding you to the schedule.
I like her- she knows I'm hurting but she can't fix this.
THIS SUCKS + I'm stuck!
weekend sentence to the hospital room-
I need-
ice
Meditation
Mindfulness
Sleep
My kids - FactTime
Positives
the view
My support peeps
My kids
I can do ANYTHING right?
others are literally dying in this building -
Call the kids.....
Kinley: "Mom. I don't want to stay here all day waiting for dad to get off work. Logan's playing video games and being mean, Grandma is stressed...."
Perfect Timing
something new to focus on---
A SLEEPOVER with a PURPOSE
A few people didn't get this- and I DO NOT care- but my body has been a mess for a year.
I've gone from 4am gym times to using a cane.
They thought MS, RA, looked for injury, inflammation.... nothing stays consistent and no official Dx
The kids know stuff is different.
At minimum, I'll be returning with a shaved head to a 9yo who is entirely uncomfortable with all things sick and an 18yo who relies entirely on my stability.
let's make the best of this-
✅Call someone to drop off the kids
✅Check with Logan to see if he wants to come (Hard PASS/gamer Saturday conflict).
✅Get ready with the nurses to have a little Saturday night fun.
✅break out Michael Myers - it is
🎃 HALLOWEEN WEEKEND 🎃
It's working----💕
Kinley:
This place isn't scary
Whoa this chair is sweet
Can we PLEASE watch the last three Halloweens - it's tradition!
Let's go sit on your executive patio
Will they let me order food?
Dude- I've got your menu figured out here is your list for the next few days - those are gross and avoid this ....
If you're not back for Halloween can we come here?
Me:
In pain but this is helping
The ice is doing its thing
The acting is distracting my mind
Somehow watching Michael kill a ton of poor actors becomes relief
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