I didn’t want to do this but I am desperate and not sure what else to do.

Let me just preface what I’m about to say with, this has been a TRYING week.

Monday September 8th at 3:45am my mom woke me up and said, call 911. She was having weird symptoms, arm pain, nausea, chills, cramps, so I did. It was not a heart attack, thank god.

However, we got to the ER and a larger medical picture came into view. After fluids were administered, she did have resolution of the pain and the nausea and chills but, curiously, her low BP did not raise and sustain like it should’ve, so she was admitted to ICU, due to the need for norepinephrine to raise her BP (if you’re on norepi, you’re in the ICU, period).

She’d had a PET scan in June to check up on the size of a long-term lung nodule she has that was thought to’ve not grown for 19 years, but it was discovered when she was admitted to St. Francis last January, that it looked like it had in fact grown, and that PET scan apparently indicated that she had kidney stones in both kidneys… yet the pulmonologist never called to tell us the findings from the PET scan, much less whether or not the nodule is ok… I’d think someone should’ve told us about the kidney stones, no?

From the probable UTI that caused the kidney stones, it was soon discovered after urine and blood cultures from the ER had time to grow, that she somehow has strep B in her system, it showed up in both cultures. She had a transesophageal echocardiogram under light sedation (not intubated, not general anesthesia) and vegetation of strep B showed on one of her heart valves (endocarditis).

Okay, so, keep up with me here. It’s now Wednesday September 10th. She’s still in an ICU room since the evening of Monday September 8th. We know she has kidney stones, and endocarditis, and then we’re told, she needs a percutaneous bilateral nephrostomy (tubes in both kidneys to drain the urine, they’re blocked by the aforementioned stones). Alright… That’s supposed to be something fairly easy, which required light sedation, not general anesthesia with all that entails (intubation, mechanical breathing, general anesthesia meds and not ‘twilight,’ as I’ve often heard it termed over the years).

This is to happen the same day she’d had the light sedation for the transesophageal echocardiogram. It needed to happen, was urgent, the urine was blocked. Got it. I was made to sign off on this as when a patient has been under any type sedation, even light, they’re not allowed to sign. I discussed with mom who was totally with it, of course, but also this had to happen or she could go septic (which it could be argued based upon 2 of 4 conditions at the ER that she DID present as such upon arrival).

So, they take her back to do the procedure. Both kidneys. this procedure requires any patient to be in the prone position (on stomach, they have to get to our kidney through our backs). Should be an hour, maybe an hour and half at most. 45ish minutes passes. Her nurse comes back to me, I was in her ICU room, not surgery waiting, as this procedure is done at interventional radiology, not in an OR, because it’s not a ‘surgery,’ per se.

The nurse comes to me and says, “I need to tell you something. Your mom, they were doing the procedure, and her oxygen suddenly started dropping. She had a severe nosebleed. They’re bringing her back up here on a ventilator. I just wanted you to know so you weren’t freaked out.” Of course, I WAS freaked out. I was asking what happened, what, how can this be, this was supposed to be an easy quick deal, etc., she said, “I know, they can tell you more when they get here,” etc. My mom is brought back to the room, along with, no joke, probably 15 people from various departments. There is dried blood all over her muzzle, neck, the sheets have literal blood spray all up on the top area.

Here’s the kicker. We were asked how much we thought she weighed, well, we don’t know. So they used the hospital bed to weigh her, prior to this procedure. It said she weighed 61 pounds. Now, she is tiny, and her leg muscles are indeed incredibly atrophied and small from nonuse but, 61 pounds?? Uhhh….

So, the dose she was given of Precedex (for sedation under intubation) and Fentanyl (for pain and comfort when you have friggin’ tubes crammed down your throat), was for a person who weighs 61 pounds. She was way too conscious for this. It was so upsetting. They got a different bed to weigh her, and it said she weighed 99 pounds. She still was very wakeful through much of the period of intubation. She would fall asleep at times, and then come to and be gesticulating and I’d go to her and talk to her about what’s going on and how she’s doing great, they’ll get these out soon. We figured out a way to communicate where she would squeeze my hand when I got to the letter of the alphabet for the word she needed to spell. The first thing she spelled was “I’m pissed.” I said, “I know but this was necessary to protect your airway, they said. This had to be done, you aspirated blood during the nosebleed in your procedure (the provenance of which, no one knows. She doesn’t get nosebleeds, she rejected the lovenox so she didn’t have a blood thinner in her, imagine how much worse if she had. They found no lesions or anything in her nose. Wtf??). So they had to do this, mom. They said they will try to take it out tomorrow, you just need to rest.”

This medical odyssey is not over yet— she was extubated, THANK GOD, on the night of Thursday September 11th, around 7:45pm, after they turned off the assistance on the ventilator and she did a “breathing trial’ on her own (you’re intubated but you do all the labor of breathing) for 30 minutes. They took the tubes out. She was hoarse but she proceeded to talk up a STORM. So much talking. We had to tell her to chill cause it would mess with her O2 saturation and she’d get tacky (high heart rate). But when say I have never cried so much from happiness, I mean, my GOD I CRIED SO MUCH I WAS OVERJOYED TO HEAR HER SPEAKING AND SEE HER NOT ON A FKG VENTILATOR. So much crying, so happy. I did not cry the whole time she was intubated or let her see or sense how incredibly worried I was, I couldn’t let her think that things would be anything but fine, I was just keeping it together so she knew she’d be okay, that being on a ventilator was just a temporary hiccup.

Now, much of what she was trying to say to me when we were communicating through hand squeezes, did not make much sense, and what we’ve figured out now is, the fentanyl caused some extreme weird dreams and hallucinations. As tireless a patient advocate as I am and have been, she hilariously dreamt that I had been “banned from the floor for asking too many questions” () and couldn’t come up there, but then they let me up there as long as we didn’t speak, and that’s why we had to communicate through the hand squeezes. She also dreamt that some weird shit was going down for the procedure the first time since she was on versed and whatever other thing I can’t remember, for the light sedation, and she heard them saying things, probably when she had the nosebleed and shit took a turn, and she told me she was sure she was going to die. She thought she received blood transfusions in there, the nurse checked her records, and she did not, so she hallucinated that. Whatever happened in there was obviously indeed terrifying as it resulted in her aspirating blood and resulting intubation.

Anyway, here’s where we are now.

She was extubated around 7:40pm on Thursday September 11th. Put on a supportive oxygen mask, and given saline nasal spray to dissolve the nasal packs that were placed after the nosebleed during the (first) of the two nephrostomies. She/we talk almost all night, very little sleep occurs. The next day, she’s weaned off of the norepinephrine, and around 3pm is no longer on it, thus at this point she’s considered stable enough that she no longer met the criteria to be in an ICU room, so…

She was moved to a medical monitoring room around 4:15pm on Friday September 12th. It’s …. Different. There’s like, nothing in here. Meaning, they weren’t going to give her fluids or oxygen. I had to push back, I was like, she was just extubated at 7:40 Thursday night, taken off norepinephrine 3 hours before being sent here, and now she gets… nothing? That seems a little hasty. Then the ICU doctor finally sent down orders for fluids after first saying no and I was like, this is insane. Not to anyone’s face, the nurse just wrote something about how we pushed back I’m sure. It was the ICU doctor who wrote the order, even though we’re not there now.

I was just freaked out they’ll try to discharge her too soon, she can’t go home today (Saturday) and maybe not Sunday or Monday, she needs to recover more. We desperately want to go home of course, but not to the detriment of her recovery. I’m like, is this a Medicare thing? I do know they can’t kick her out, the nurse earlier said, they can’t legally make you leave if you think you’re not ready, so that’s good to know. I just can’t imagine them making her leave in this condition.

I mean, here’s the list of stuff going on now. Two nephrostomies to drain her kidneys since they have stones blocking the exit of urine. She can’t eat food because she can’t breathe thru her nose due to the dissolving nasal packs. She has fkg strep B endocarditis, which requires IV antibiotics nightly for like, 4 weeks, then she needs surgery to remove the kidney stones. She was just on a ventilator under 48 hours ago. It’s too soon to shunt her off to home. I mean, come on.

We didn’t meet a doctor when we first got to this floor yesterday (September 12th), since it was too late in the day.

Then, the doctor on the floor this weekend came in this morning (September 13th) and was great, the first woman doctor she’s had this whole time and she was wonderful and listened and answered all my questions and reassured us that she isn’t going to be sent home too quickly. I cried because I was just like, this has been so much already and it felt like they were trying to send her home, so I’m just relieved they’re not going to do that. Believe me we both want to go home but not to the detriment of her recovery.

I can’t work at this time and have missed several gigs, unfortunately, but my mom’s health is the most important thing and as much as it feels weird to ask for help, I feel like I have no choice. Every bit helps. Some will go to bills, and some will go to paying friends to stay with her if I have to leave to go do things like pick up her ostomy supplies, get groceries, buy cat food, whatever. Thank you so much for your help and kindness, friends. It means more than you know.

edit:

Because some have asked, here is my other info:

Venmo: https://venmo.com/u/StephanieOliverMusic

Cash App: https://cash.app/$stephanieolivermusic

Paypal: https://www.paypal.me/stephanieolivermusic