Wednesday, September 11, 2013

back for more...

In April 2012, I bundled up my then 84-year old mother, bought her a ticket for her first plane ride ever (it went surprisingly well) and whisked her down to Florida. We moved our office into the small guest room and set up the suite for her. All the comforts of home...

A New Englander, born and bred, she had some (quite understandable) adjustment issues. For one, it's hot here. For seven months out of the year, it is either hot (humid) or hot (dry). She needed a wardrobe. She needed a pair of sunglasses. She needed a new doctor. Check, check and Checkver.

Like many people at her age, Mom has what they call 'multiple morbidities'. She has a lot of things in her body that don't work as well as they used to. She's hard of hearing. She needs help walking. She has a massive hiatal hernia. And one day it almost killed her.

                                      Mom and I (Nov. 2012)

I was at the hospital to pick her up. Mom had gone into the emergency room over the weekend (three days after her 85th birthday) with a little pneumonia. Not uncommon for her. A clash of morbidities. Couple days on antibiotics and she can go home on Monday. It was Monday. But she didn't look like she was ready to go home.

There was a lot of back and forth talk between the nurses and myself. Then it was me and the doctors. Then the doctors and the surgeons. An endoscopic test confirmed that the hernia had strangulated. It was twisted around her esophagus. She was bleeding internally. Without surgery, she would die. With surgery, at her age, she had a slim chance. I could tell that the doctors were hesitant but whatcha gonna do? It's my momma; we went for door number two: emergency surgery.

The surgeons basically untwined her stomach, pulled it down and pegged it in place via a gastrostomy tube that exited through her abdomen. (Too much information? Yeah, tell me about it.) She survived that day. It was the next five months when things got dicey. She almost died four more times.

Two old gals: Mom loved Ruby

I'll keep it brief.

February 2013: After surgery, Mom was transferred to ICU. She came off the ventilator like a champ. Then fluid built up in her lungs. Eight decades of antibiotic treatments... she is allergic now to most of them. But the infectious disease specialist managed to find a good one. She stabilized. They sent her down the hall to 'progressive care'. She was in pain. She couldn't take anything by mouth. She contracted MRSA.

After a few days, Mom was transferred to an acute care facility. Her stomach would not accept anything, so she was put on a PICC line and TPN (liquid nutrition via a vein).

March 2013: The doctors operated again, converting her G-tube (Oh, how quickly one adapts to the lingo. It's rather frightening.) to a G-J tube. Now she has a port that goes into her stomach and one that goes into her intestine. Meds go in the stomach line; liquid nutrition goes in the jejunostomy tube. She contracts c-diff. Not good.

Mom begins to bleed internally. The docs can't find it, test after test after blood transfusion after test. Up to ICU again. They put her on blood clotting drugs. That worked. She developed blood clots in both of her legs. So they put her on blood thinners.


April 2013: Mom has a UTI, a blood clot in her lung and MDRO. But she is no longer 'acute enough' for the center, so she is transferred to a 'skilled nursing facility' where she spends most of her time waiting for her next pain medication dose. This place is around the corner from our house, so Fritz and I can visit and check on her progress several times each day. By the middle of...

I did a lot of crossword puzzles
May 2013: There is something seriously wrong. Mom is transferred back to a hospital. She is anemic. She has internal bleeding, MDRO (again), pneumonia, severe nausea, a urinary tract infection and ...sepsis.

ICU: a really good place to be when your condition is really, really bad... except she developed ICU psychosis. She pulled her stomach tubes out. When she was stable, the surgeon replaced her g-j tube.

Still in ICU psychosis, Mom developed severe edema throughout her body. She had blood clots in both legs and one arm. The infectious disease doctor again pulled a magic antibiotic out of his bag and she stabilized. Down the hall into a ward for a few days and then transferred to a different 'long term care' hospital.


June 2013: Mom is up and down. Got c-diff again. She still has trouble with the liquid tube feedings. They get her stabilized. We want her home. At the end of June, we finally bring her back to her own sweet 8pm and with no medications whatsoever. It was a very long night.

The next day, the home feeding equipment was delivered. I got a ten-minute lesson from the home nurse.  Finally got her meds straightened out --I have come to realize that many doctors (and/or their staffs) make crazy mistakes on scripts: no date, no amount, no dosage, no signature...we had one of each in that first batch. Mercury retrograde, of course. Argh! Ten days, later...

July 2013: Back to the ER with another urinary tract infection. They admit her. But they don't feed her. The doctor orders an antibiotic on her 'allergy' list. The pharmacy catches it and doesn't fill the order. Yay! But nothing else is ordered to replace it. For two days. Finally, I threw a hissy fit with the charge nurse and the infectious disease doc is called in. He pulled another rabbit. (That man is amazing) but after all of this, we want her and the rabbit back at home.

In fact, we insist.

We had the backing of the nursing staff (bless' em!) that pressured the doctoring staff and so, we brought her home. Mom paid hundreds out-of-pocket for that privilege since Medicare won't pay for an IV antibiotic to be given outside of a hospital setting. The home nurse came in every day for a half hour and administered the treatment.

August 2013: Somehow, we made it. And we continue to make that magic happen every day.

It is almost 1 a.m. I just gave Mom her last pill and checked her feeding pump. Tomorrow, she wants to try to use the walker to exercise her legs. Sure, we can do that.

Anyway, that brings you pretty much up-to-date. That's where I've been. I'm a caretaker now. I'm sure the topic will come up in future postings.  


1 comment:

  1. Wow, what an amazing journey! She is so lucky to have you looking after her and I am certain you are perfect in the role of caregiver. Thank you for sharing your story. As a wise man once said, "The pain then is part of the happiness now." ~Blessings to you and your mom. :)