Archive for January, 2015

January Update (Part 1)

Thank you for all the holiday greetings, y’all! I haven’t MEANT to be gone for so long. It just turned out that way! Let me tell you why….

Mom had her cancer surgery at University of Florida hospital because it was going to be tricky. Her oncologist had recommended several surgeons, most of whom were waaaaay out of the area. The closest one that he felt would be able to handle the surgery for the metastatic stage III Merkel Cell Carcinoma was with the University of Florida hospital on 8th Street in Jacksonville. That was about two hours away from Mom’s house, a distance that was doable for her.

She had her surgery in which her tumor near her ear was removed, her parotid/salivary glands removed on the right side, and neck lymph nodes stripped. Her incision stretched from her forehead, around her ear, down to mid neck, and across. She was very ill after her surgery, retching forcefully repeatedly, although she had nothing in her stomach to expel. She was miserable.

My brother and I were pretty miserable as well, because we had had to leave at 3:30 a.m. to get her to the hospital at 5:30 a.m. on November 10!  We couldn’t sleep, so were at the hospital all bleary-eyed at 5:30 a.m, had to wait to visit her in recovery room until the afternoon, and she finally got a room that night. Brother and I had been chugging Starbucks coffee helpfully sold at the hospital, and we were simultaneously tired and wired. We bid goodnight to Mom, and I drove the two hours into Georgia to drop brother off at Mom’s place, picking up takeout food along the way.  “Look, you’re dead on your feet, you need to stay here tonight!” he insisted. I declined, because I had livestock to feed and a list of folks to call with an update, so off I went.  Daughter had taken off work to care for the four kids while Mom was indisposed, so no worries about that!

Next morning, I fed the livestock before heading the hour north to Mom’s to pick up brother. He’d just finished talking to mom, and said she sounded well. He insisted on my eating breakfast before we left (not that I’m in any danger of wasting away), then we washed dishes and picked up before heading back to the hospital.  We didn’t arrive until @ noon.

We were greeted by a nurse that said “Oh, good! She’s ready to go home. We’re just waiting on the discharge orders.” Um, WHAT?

“She had some pretty major surgery yesterday. Are y’all sure she’s ready to go home?” I asked.

“SHE thinks she’s ready to go home!” said the nurse.

I went into Mom’s room. “Are you SURE about this whole going home thing? You were extremely sick yesterday, and I don’t think you’re ready to go home.”

“Well, they think I’m ready, and I really want to sleep in my own bed where I can get some rest!” she answered. That was November 11.

We picked up the discharge orders and the pain prescriptions, and headed home. I stopped at the Rite Aid pharmacy on the way to fill her pain prescriptions. “We can’t fill the pain medications”, said the pharmacist. “The doctor doesn’t have a DEA number on file.”

“EXCUSE ME? Her ‘doctor’ is a surgeon at University of Florida that just operated on her for cancer YESTERDAY. She has a 14″ inch plus incision plus having a tumor and her salivary glands removed. WHAT DO YOU MEAN SHE CAN’T HAVE PAIN MEDICATION?”

“Sorry, Ma’am, it isn’t us, it’s the government.”

So I had to take Mom home WITHOUT pain meds, then go back to Florida to beg and borrow pain meds from somebody that had had surgery recently. This is the second time now I’ve had to do this. I guess that makes me officially a drug dealer. Hell, I’m a drug dealer that crossed state lines. I promised to return and replace the drugs when she got her prescription filled, because nobody knows now when they have surgery whether they’ll be able to get pain relief from the pharmacy, or whether they’ll have to go to the corner drug dealer. They’re hoarding those pills against a future need.

What’s really pitiful is that hydrocodone ain’t all that as a pain reliever anyway.

When I got back to Georgia, I cut an oxycodone in half for her. She took it and some nausea meds, then went to take a nap. She was up again a couple hours later, and her face was really swollen. “Mom, that’s a lot of swelling. I think we should go back to the hospital.”

“No, they told me that I was going to have some swelling, it will be okay!”.

“Yeah, that’s not some swelling, that’s a LOT of swelling. Let me get you an ice pack. Maybe you need more elevation.”

“I have my bed elevated on two blocks of wood, plus I’m using three pillows. I’ll take a little ice.”

I got an ice pack for her and wrapped it in a towel. She went back to bed. I went to look at her after she fell asleep. She looked so tiny in that big bed, and her face was so swollen. I didn’t go back to sleep but checked her every few minutes. My brother was exhausted and was sound asleep. She was up again at 2:00 a.m.

“Mom, can I get you anything? Do you need anything for pain or nausea?”

“Oh, no, I can’t swallow.”

“You can’t swallow? We need to go to the hospital immediately.”

“No, no, I’m fine. They said there would be swelling.”

“That’s TOO MUCH swelling. We should have gone two hours ago. We need to go.”

‘Well, maybe we can go in the morning. You need to get some sleep. You shouldn’t still be awake.”

“I’m worried about the swelling. You should get some sleep, too.”

“I can’t breathe when I lay down.”

“Grab your stuff, we’re leaving now!” It was 2 a.m.

She didn’t want to go, but I was done with listening. I woke up my brother, told him Mom was having trouble breathing, and we were heading to the ambulance NOW. I left my phone. He left his dentures and wallet but had a pocket knife in his pants pocket that he didn’t remember was there, and neither one of us knew would be an issue at the emergency room. We left Mom’s purse.  “Why”, you might ask, “did you go to the ambulance? Why didn’t you wait for it to come to you?” Well, she lives out in rural Georgia. We knew where the ambulance was. They didn’t know where we were. I could drive a whole lot faster to them than they could drive to us.

We woke up the ambulance folks. They looked at her and then asked me “WHY did they release her from the hospital the day after surgery like this?”  I just shook my head helplessly. “It must be that better health care we’re getting that Obama keeps talking about.”

“Don’t try to follow us!” they admonished. “Drive carefully!”

“I have to!” I told them. “I have to stop and get gas on the way.”

Off they went. I put $50 worth of gas in the car, then only had a couple bucks left over for large service station coffees for me and my brother. Off we went again.

We couldn’t find the emergency room entrance in the dark. The rest of the hospital was locked. The road that we were on didn’t go around to the emergency room entrance. I jumped some curbs and went across some grass in the parking lot, then parked near where I could see an emergency entrance sign. We walked in. We couldn’t get in that way. The personnel directed us to another door. We had to go through a metal detector, then an officer had to take my brother’s little pocket knife and put it in a safe. By the time we were able to be in-processed, the person that made the tags for the family of patients in the ER had gone to lunch (at  4 a.m.) and we had to wait.

About 5 a.m., the person making the ID tags came back, and we were ID tagged, then led to a little waiting room.

About an hour and a half later, a doctor came in, introduced herself, and asked why we hadn’t gotten her to the hospital sooner. I told her that we lived two hours away, we left as soon as we knew that she was having trouble swallowing (and breathing), and why had the hospital released her one day after surgery like that?

She told us that mom was in critical condition in a coma, and left.  We waited another hour, then I borrowed my brother’s cell phone to call my family to let them know what was going on. We had to go outside to get a signal. We went back inside and waited. And waited. And waited. I got tired of waiting, and stood in the hall looking for a doctor, any doctor, so we could find out what was happening. The same doctor that jumped my shit earlier said “Oh, I didn’t know you were still here. We thought you had gone home.” I informed her that we’d gone outside to contact family members on the phone and couldn’t get reception inside.

“Well, we were looking for you to get permission to do surgery, but we couldn’t find you, so we went ahead.” She sent us to the recovery waiting room. And we waited. And waited. And waited. And waited.

I’d spent all my money on gas. My brother had left his wallet, but had a few dollars in his pocket. He got us some coffee. The surgeon came by and told us that she’d had some blood vessel tearing after the surgery (I think probably from all the nausea and attempted vomiting), and it had created a huge clot under the skin that was impinging upon her esophagus and trachea. About 3 in the afternoon, we got to go back for 5 minutes to see Mom. She was on a ventilator.  We went back and waited some more. Much later, we got to see Mom for five minutes. She was still in a coma. Still on a ventilator.  I still needed to drive my brother two hours north, then one hour south for myself. I hadn’t slept for 48 hours. We hadn’t had any food for longer. It was time to go.

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