Hospital Hell

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Disclaimer: The following was written immediately after arriving home from the hospital at 11pm Sunday evening. I understand it’s not anybody’s fault that it was Sunday with few staff on hand. I’ll leave this to illustrate my emotional state at that time.

Sunday March 20th – following the CT scan around 1pm they find what seems to be an abscess forming in the surgery area. Bacterial infection and swelling from that area is likely the cause of headache and fever. Pain is very serious when he moves his head. Nurses say we have to wait for the neurosurgeon to arrive and make a diagnosis before giving him anything to eat or drink in case he needs to go into surgery. The whole time he’s been telling us he’s hungry or wants some water to drink but we can’t give him any. In the meantime, he’s transferred to the inpatient ward around 4pm. While there, we finally get a visit from the neurosurgeon 3 hours after they were first called. They do an MRI around 6:10. Bring him back up to his room after, and the nurse prescribes more painkiller (morphine), antibiotics, and steroids for the swelling. We ask again for an update from neuro to ask about whether he can eat. No word at 8pm. We wait until 10pm until the nurse finally gets back from whatever she was doing. We’ve been paging her since 8:30pm. Still no update from neuro (despite saying they would have one before 9pm, which is when we’re technically supposed to leave the hospital as visitors). We didn’t dare leave the hospital until the nurse came back with his prescribed pain killers and other medicines. We finally after the nurse checks in around 10pm with his meds, and we say goodbye to go home to sleep. He’s not going to have any rest tonight since they have to wake him up to give his IV meds around midnight and 2am. I hadn’t eaten since lunch so I grab some McDonalds on the way home. We have to head to the hospital early tomorrow to continue to wait for news from the neuro team.

Since 2am last night, he’s had no more than 30 consecutive minutes of sleep while sporting an insane headache (can’t walk or get out of bed), can barely talk above a whisper, with no food for 30+ hours except a croissant before we left for the ER (maybe a banana) and barely any water. If the neurosurgeons don’t want him to eat or drink since he might go into surgery immediately, fine. If it’s 7pm on a Sunday and there’s no chance of them doing the surgery before Monday morning, why the fuck are you telling a starving and dehydrated patient to not eat anything? What is this, fucking Guantanamo Bay? It’s like I’m watching a torture session with my own eyes, and I’m helping by refusing him food. And apparently, he did this all before the first time at the ER in February, going 3 days without food because neuro wanted to investigate his scans and see if he needed immediate surgery. (They didn’t end up doing the surgery after making him starve and waited until the following week). He lost 18 pounds in a week that first time.

With this neuro team dragging their feet like this, I have serious doubts. Cleveland Clinic #2 hospital in the nation my ass.

(End of disclaimer)

Monday March 21st – my mom and I wake up at 8 to get to the hospital as soon as possible to make sure we don’t miss anything the doctor might come in and say. We get there around 10 after buying things for him along the way. We get there, he still hasn’t had anything to eat with no update from neuro. Finally, around 10:30, a flurry of nurses and doctors come in with updates, and neuro finally giving him the green light to eat and drink since they examined his MRI scans and deemed an operation unnecessary. His lips had cracked and skin peeled from the lack of water by that point. He only had a saline drip last afternoon and that morning for hydration. His headache had subsided last night and he stopped morphine around 2am. He felt well enough to be able to walk down the hallway when physical therapy came in to check. To the untrained witness, it seemed like every different nurse and doctor that came in the room asked him the same questions and performed the same test (why?): any recent changes in balance, dizziness, vision, etc. and the same physical checks of vitals and cranial nerve connections (via muscle activations). We start unpacking all the fruits we brought and figured out how to order a proper lunch for him. My mom and I also go grab our own lunch and eat in his room. After around 2pm, he had recovered enough for us to be comfortable going home and taking care of more paperwork.

From what I could ascertain from all the various different doctors that came in that day, they couldn’t pinpoint any one cause of the serious fever and headache, with many just citing complications from the surgery back in February (an abscess formed, possible infection, meningitis, we might need to do a Lombard extraction, etc.), brain swelling (treated with steroids), and other things. None of them except the infectious disease doctor seemed to care much when we told them that our family all had cold symptoms going around. A lot of them focused a lot on his loss of vision on his left side, which he had been experiencing since the surgery and not as a result of what happened in the past two days.

Then, of course, around 5pm, the infectious disease doc called us and told us after testing for more common pathogens, they finally had a positive on a rhinovirus (common cold virus). So, obvious answer being true (honestly, why wasn’t this the first thing they tested for yesterday along with the CT?), they still want to keep him in the hospital for a few more days, so far with nothing to indicate a link between his illness and headache/fever symptoms (aka why they were so much more severe than what the rest of us had—I mean, obviously because of the tumor and resection but physically why) and no further plan of treatment other than to “hurry up and wait” and start radiation therapy and chemo sooner to get it over with. Tomorrow, my mom will go visit him alone to leave me at home to do more chores and to check up on his status since he seems to be recovering very well given what he was like just a day ago.

Another disclaimer: I know very little about hospital management and providing patient care. However, with the way he was suffering yesterday (gut-wrenching moaning and constantly grimacing from pain from the headache with no food or sleep), why did it take until 24 hours after E.R. admission for the neurosurgeon team to make a decision on whether he needed a procedure? From a layman’s perspective, his condition honestly seemed life threatening. Enough so that I could barely sleep Sunday evening (woke up like 10 times from the stress of seeing him in that state). I don’t know. Someone with more experience please inform me.

In other news, it’s Wilton’s birthday tomorrow. I was also going to begin studying for the final exam I’ve put off from winter that Sunday but obviously, that’s going to be delayed even more now. Only god knows how I’ll be able to retain any information from what I study for this exam.

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