Reasoning with Madness
"This is a barbaric yawp, and it will be sounded over the roofs of the world."
Tonight my mom was finally transported to OHSU in Portland via life flight helicopter following a hellish night and day in the ICU at Good Samaritan Corvallis, where her health was on a nonstop backslide toward death.
I have had to battle with this hospital to get her the care she needs, begging them to simply send her, finally, to OHSU. There is far too much to this story to simply explain here, but it is far from over and I am now confident that she will get proper care finally. I continue to pray for her recovery and she's in pretty bad shape still, but the ICU docs in Corvallis (who were great) finally conducted the MRI that I begged her dismal sleezebag of a PCU doctor to perform days ago (who refused), and what do you know...it found she had multiple mini strokes and she is suffering from PRES, which I am still trying to understand, but explains much of her cognitive impairment.
There is a lot more going on but those are some of the primary issues to address. She should not have suffered this greatly. Friends, please, never let a loved one alone in the hospital, especially in dire situations. And advocate for them. It became clear my mom would have died without my intervention and aggressive pursuit into what care she was truly getting (or not, which is more the case). For now, my mom has arrived safe in Portland and we don't have to make that 1.5 hour drive to see her.
My dad will be coming up to stay with us and we will learn more soon. For now, on this Ash Wednesday, the Mayan Day of the Dawn, one of our biggest prayers were answered.
Don't be afraid, just believe.
Another day at the hospital, this time with Kea joining me to visit my mom. First the good news. My dad was discharged today and is feeling as good as he did before he got sick. His vitals are back to normal, he's feeling good and is back to his old self again. Also in the good news bucket, my mom is not on a ventilator, her lungs seem to be recovering, the pneumonia is on the outs, her fever has been gone for days, and she's been moving her bowels somewhat regularly. She's also potentially over her long history of opioid requirements and the detox phase, which she was using to combat the pain of rare neurological disorders that have plagued her for nearly two decades.
The bad news. My mother's bladder is still not functioning without a catheter, she's having trouble swallowing and her cognitive functioning has taken a profound and hellish turn in the wrong direction. She can barely speak all of a sudden, is having significant memory impairment and she's having trouble forming words for some reason. She knows who I am, she remembers our talk about that "Stephen King show on HBO" we talked about last time, she knows who the president is and still hates "the fucker" (love my ma) and she is still worried about missing the wedding. But she has trouble remembering her grandchildren's names, she has to be prompted to know where she is and she gets frustrated that she can't talk. The doctors aren't entirely sure why she's having this happen and will be performing tests tomorrow to figure it out. We aren't ruling out stroke, MS, parkinsons or perhaps this is a bit of ICU delirium that the doctors see quite frequently. But it really worries me and seeing her in this condition really shattered me today.
I lost it in that room. I sobbed like a child and held her hands and told her I loved her repeatedly. I told her to keep fighting. She shook and fought to continue to form the words to say she loved me too, while my dad and sister and fiance talked with nurses and we talked to the doctor with our list of questions. It was one of the most difficult days yet. They think she will be headed to rehab for some weeks after she leaves here, but they need to identify the cognitive issues she's dealing with. It's fucking heartbreaking and I'm struggling very much with all of this.
My temper is short, my mood is dark and I am doing everything to hold it together. I am really not ok, but I must stay intact. I have to be there for her and my family and I pray that she comes back.
Please, friends, family, keep those positive thoughts and prayers coming. She can use all of them. Today I showed her how many reactions and comments this has gotten and she started crying and asked me, "these are for me?" I said yes mom they are. They are not going unheard and they all serve to heal a beautiful woman, a kind and loving soul who should not have to suffer like this.
If there is anyone reading this who works in the medical community who might have some thoughts or ideas about her cognitive issues that I could relay to the doctors, please private message me your thoughts. I am not looking for medical advice per se, but just some things they could be looking at to help identify potential issues. Forgive me for asking that, but perhaps it could lead to a discovery on her condition that could help her turn the corner.
Never take this life for granted and share your love with those closest to you and let them know how much they matter. You never know when shit will get weird or when that person might leave this earthly plane or need you by their side to stay here.
And remember, try to be kind. You never know what someone is dealing with. Good night.
I'm exhausted. It's been a brutal couple weeks. I don't have the words, the energy or the mindset to give a full update on my parents right now, and I know many of you have been checking in and sending your love and kindness and prayers and I can't begin to thank you all for the unbelievable support. It seems all that positive energy is working because what you're looking at is quite possibly a miracle...
I'm pretty emotional right now so instead of trying to write my own update, I will leave you with a picture and words from my sister Shannon, who has been making her own hour long drive, following her own spinal surgery just a few weeks ago herself, to make sure my parents are ok.
Here's what she had to say:
"Mom and dad are ok. Mom's spirit is amazing right now; laughing, ready to get out of the hospital, cracking jokes--I haven't seen her this happy and lively in years. Dad is struggling to breathe, but doing much better on the CPAP machine. They say he did have a heart attack.
I guess they are just making sure mom and dad's heart issues weren't all just related to the pneumonia, before they finish their tests to make sure they weren't cardiac.
There are excellent cardiologists there and I am so happy they are ok and there.
I sent all of my love from everyone to mom, when she was coherent; individually and she cried and said she loved all of you and who you were to her and the stories of you all.
Mom and dad have a room together, too, now. Is this not the sweetest picture you all have seen in so long?
46 years married, in the hospital together fighting the same conditions."
My mom was sent to Corvallis this afternoon after the fever returned. She remains in a medically induced sleep, still on ventilator, with congestive heart failure, COPD and wild blood sugar levels. Still little bowel movements and extended gaseous stomach. But the fever is gone and they believe the infection has cleared. Tests on her heart, lungs and cognition will be done tomorrow. They expect to remove the breathing tube, but they expected to do that Monday, then today. There are more specialists at this hospital. She is stable, but the situation is very critical and totally up in the air at this point. Doctors are sure her life will be very different if she makes it. And tonight, my father headed to the hospital himself due to heart pains and having trouble breathing. Things are not ok right now. In fact, this has been a total nightmare.
I've been hanging with my mom today in the ICU, giving my dad a much needed break as he's been here pretty much every day this week from 8a to 8p. He has started to struggling with his own heart and health issues over all of this and he needs to rest himself. I've been struggling to sleep too, but I can handle it a bit better than my 70 year old dad.
My mom had a bit of a setback late last night and earlier today. She's back on the ventilator and medically sedated again fighting off a new fever, which peaked today at 103.7. Its now at 100.7 thanks to a couple rounds of tylenol.
She is suffering from a nasty return of significant pulmonary endema from the pneumonia and weak heart. But she's on two of the more powerful antibiotics (they still have many options above these if need be) to get the lung infection under control as well as probiotics, a feeding tube and a bile discharge, which is finally looking "the right color" (further detail is not worth discussing).
The doctor remains optimistic that she will recover. His worry is side complications like full heart failure, lung failure or infection that does not heal, septic issues, dementia (apparently she had some episodes of confusion yesterday I learned about today), or a whole laundry list of potential issues that could occur. It's a delicate situation and we've moved a little backwards earlier today. The good news is she seems to be responding well to the treatments since then and her vitals remain stable.
By Monday we should know where things stand better. If she is not seeing some solid recovery by then, we will be looking at a new approach and potentially a move to a new hospital in either Portland or Salem. That would mean things are pretty troubling. We aren't at any hospice scenarios by any means, but that could be a conversation Monday. I refuse to accept that tonight.
I've kept her company and told her stories and learned much from the exceptional nursing staff here. I shall remain vigilant that my mother will battle back to good health soon. Thanks again for all the well wishes and support. It means more than I can express. I intend to share all the comments and likes with my mom when she is awake again. It's time for a trip to the cafeteria. I'm starving.
Thanks to the outpouring of support from everyone. Sorry if I am slow to respond or just haven't yet, it's hard to keep up on everything, with work and life on top of this difficult situation with my mom. An update here to make it simple: she is in stable but critical condition. Not much change since Monday night. We're staying hopeful despite the waves of fear and heartache. They tried to remove the breathing tube yesterday but she was too anxious. They will try again today. They also collected a sample of fluid from her lungs to test to make sure they've got the right antibiotics in play. They said they can make a custom antibiotic if it's an uncommon strain. She hasn't woken up yet, no opening of the eyes, no reaction to anyone talking to her, everything has been autonomic function only, so we are worried about potential brain damage. I assumed it was due to the medication she is on, but based on my conversation with my dad, that might not be the case. She has been down this road, though, and perhaps I'm just forgetting how long she tends to rest. Last time it was a few days, so perhaps we are just worrying over nothing. Docs aren't concerned though and expect her to recover so we are keeping that in mind. We will be following up with them on this issue today.
My family and I are hanging in there. I went to work yesterday. Went home to get some rest last night since I have barely slept. Feeling a little more strength this morning but the lingering cloud of worry remains thick. I'll be going to work today since that keeps me from going too crazy. My feeling is if I'm at work, things are ok. If not, then I go into grief and serious worry mode and fight panic and anxiety. And hospitals are hard for me (like airports). Sitting there, watching machines keep my mom alive with nothing to do, no way to help, just feels awful and it's very difficult for me to endure long periods of time in this situation. Plus the ICU is small, only two visitors at a time, and it's not very comfortable or pleasant to be there.
I keep thinking of my last conversation with my mom about a week ago or so, which was a nice long talk on the phone about a lot of different things. She was happy and peaceful and we had some laughs.
But she still needs to walk me down the aisle of my wedding in June. I have a song that chokes me up every time. So she can't be going anywhere anytime soon.
Had a bit of a meltdown last night but it's from holding it together all day. It just came flooding out. Anger, sobbing, heartbreak, worry, fear. All of the shitty feelings. But it was necessary. I plan to go back to the hospital probably tonight even if not much is changed.
I'm praying and hoping and feeding the energy with positivity that today is the day she wakes up and wants to to watch Ancient Aliens or something.
Sitting bedside in the ICU with my dad watching my mom battle pneumonia and heart failure after an ambulance trip last night. Hooked up to an oxygen machine, an octopus of hoses running in and out of her mouth and arms, she is unconscious, but fighting like the warrior she has always been. I know she will make it through this, as she has before. But seeing her in this state is terrifying and heartbreaking. I will remain positive and hopeful, but it has been a long 21 hours.
Who Am I?
I am Ahab.