Tag Archive | hospitalization

Dear Dad…

Dear Dad,

It’s been almost 11 years, and I don’t know that I’ve ever missed you more than I do right now. I’m writing this in a chair beside Mom’s hospital bed. She’s been in the hospital for four days, as I suppose you know, and she doesn’t seem to be improving yet. In fact, there’s been a new complication every day. I sure wish I could ask you what to do.

She’s having trouble eating. She ate pretty well on Saturday (after two days of keeping down nothing but liquids), but on Sunday she had no appetite at all and had to make an effort to take a few bites. A couple of times she muttered wearily, “Gotta eat to stay alive.” It reminded me of the last year or so of your life, when you had to take in all liquids through a feeding tube because otherwise you aspirated into your lungs, and how you used to talk about all the hours you spent in a day “just staying alive.” I remember when you asked me to find that Bee Gees song, and I decided to make you a whole CD of music I thought you’d like, including “Stayin’ Alive”… but I didn’t finish it in time. Sorry about that, Pops.

Anyway, back to Mom. She ate almost nothing yesterday, and when I was there at dinner I discovered that the issue was more than having no appetite or feeling too tired to make the effort. She couldn’t seem to remember HOW to eat. She let me spoon feed her a little bit of pudding and I think that was all she ate all day except for a Boost shake at lunch. This morning I fed her breakfast and she actually seemed interested in the food for the first time, telling me “Now the applesauce” or “Give me a bite of that yogurt.” But when she tried to feed herself, she was missing her mouth and dribbling food down her chin. What does this mean, Dad? Is it going to get better, or is this where we are now?

I wish you could tell me what it means that Mom is “dreaming with [her] eyes open” and talking to people who aren’t here. A couple of times she’s seen someone in the room. I don’t know if it’s just the multiple infections, or a side effect of one of the many medications, or if she’s starting to see between the worlds. She hasn’t mentioned seeing anyone who I know to be on your side of the veil yet, which is a comfort to me. I’m not quite ready to let her go. You’ll have to wait a little longer for your dance partner, OK?

* * * *

LATER: I put this aside to help Mom, and then they brought her dinner tray. I started feeding her some mashed potatoes and gravy, and after a couple of bites she said, “Let me feed myself!” She moved slowly and a little clumsily, but she didn’t miss her mouth this time. She ate some mashed potato, a couple bites of the fish (too tough), some applesauce and some pudding. And when she’d eaten all she could, she actually picked up the word search puzzle book I brought her for the first time. She didn’t do more than flip through the pages and put it down again, but it’s an improvement. I feel much more hopeful than I did a few hours ago. If you had anything to do with that, Dad, thank you.

One more thing, Dad… I wish I could have seen your reaction to the smug know-it-all hospitalist, though I’m pretty sure I know what it would have been. His behavior was just like the surgeons you used to complain about at the dinner table back when you were an anesthesiologist. I wanted you here to put him in his place when he was so condescending and dismissive to the nurse who had been so wonderful with Mom. No wonder the nurses at Franciscan appreciated you so much.

I have to get some sleep now. Thanks for keeping an eye on Mom. I love you.

Dad Sleeping

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If it’s not one thing…

… It’s another, as Gilda Radner’s SNL character used to say. It’s always something!

I had a really lovely weekend planned for myself, with a restorative yoga class on Friday evening, a planning meeting for a nonprofit I work with on Saturday, gardening and a women’s circle on Sunday. But Friday morning I woke up to text messages from the owner of Mom’s care home.

Mom had vomited three times on Friday, the texts said. She had a low grade fever (99.0) and had some diarrhea. It sounded like a typical stomach bug to me, but I told her I would call the primary care doctor as soon as his office opened. I called and left a message for the nurse to call me back. I checked in with the head caregiver a couple of times before lunch, and Mom was now keeping down liquids (and half a banana for breakfast) and her temperature was back to 98.7, but the diarrhea hadn’t stopped. They were concerned about dehydration. I called the nephrologist to ask if we could give her Pedialyte (answer: no, too much potassium for someone with chronic kidney disease) and got some good advice from the nurse. The primary care nurse still hadn’t called me back when I left the office at 4:30 p.m. I still thought it was just a stomach bug, and it sounded to me like the worst was over.

Shortly after 5:00 p.m. I got another text from the owner of the care home. She said the diarrhea had gotten much worse and her pulse was very rapid. She wanted to take Mom to the emergency room. Let me call her doctor again, I said. I called, got the nurse on the phone this time, and she confirmed that an ER visit was the way to go. When I arrived to pick Mom up, it was clear to me that she was very sick indeed.  So we spent Friday evening in the ER. They got her started on IV fluids, did an EKG and a CT scan, and drew blood three different times for labs. She was experiencing atrial fibrillation and her blood pressure was the lowest I’ve ever seen, around 105/51. I’m afraid it was a pretty miserable few hours for her, more so than most ER visits have been. Everything seemed to cause her almost unbearable pain, from the blood draws to the catheter to cleaning up the diarrhea that has caused a painful rash on her backside. Her face was as pale as I’ve ever seen with a yellowish cast to it.

The ER doctor suspected a C Diff infection, which is pretty worrisome as that can be very serious for the elderly. So they had to collect a stool sample for testing, which was more difficult than you might imagine, and started the admission process. It was 1:00 a.m. when they finally came to take her to her room, and 2:00 by the time I left to get some sleep.

Thirty-six hours later, we still haven’t gotten lab results to confirm or rule out C Diff… but she does have a UTI and pneumonia in her right lung (upper and lower). She’s still having some fibrillation, and they suspect a mild GI bleed. No wonder she was so sick! That’s a lot of issues for one frail 90-year-old.

I got to talk to the attending physician this morning, and based on her improvement since Friday night he doesn’t think she has C Diff (whew!), but they can’t plan for discharge until the labs rule it out definitively. They started her on three antibiotics — one for the diarrhea, one for the UTI, and one for the pneumonia. The diarrhea had stopped by midday yesterday, and she’s got some color back in her face and even a little appetite now.  If the test comes back negative for C Diff, she’ll likely be discharged tomorrow.

Unfortunately, I think the likelihood is they’ll send her to a SNF for rehab for at least a week. And I am flying to San Antonio on Thursday for a long weekend co-facilitating a retreat. I hate the idea of her being in one of those places when I can’t be here to check on her, so I’m already thinking about who I might be able to line up for check-in visits for those four days.

The surprising thing is that my anxiety hasn’t shot through the roof. I’ve been fairly calmly readjusting to each new development, concerned but not panicked. That feels good. One day at a time…

It Takes a Village

After four nights in a hospital, tonight my mom is sleeping in her own bed. Today was a pretty challenging day for both of us, and I’m glad it’s over.

They had intended to discharge her yesterday, but the radiology department got backed up with emergencies and couldn’t do the thoracentesis of the left lung until this morning. They got her in first thing (about 8:15), and I was anticipating another quick and easy procedure… but this one was tough. She flinched multiple times while the doctor was injecting the anesthetic, and while the fluid was draining she had a hard time staying still, saying that she hurt and couldn’t breathe. By the time the nurse removed the tube and bandaged the injection site, Mom was clutching her side (just under her left breast) and almost gasping with pain, saying “It hurts!” with wide, scared eyes. I was scared, too, especially when she told us that the pain was going all the way down her side and up to her shoulder.  I was afraid she was having a heart attack and couldn’t understand why the chatty ultrasound tech wasn’t more concerned.

They had ordered a “stat” chest x-ray following the procedure, and the x-ray technician was waiting outside her room when we got back. I told the nurse about her pain and he listened to her heart  to confirm it wasn’t “a cardiac event” before they proceeded with the x-ray. She kept telling us over and over how much it hurt, which is so not like her. Mom has never been a complainer. It wasn’t until the nurse said gently “It hurts because you just had a procedure. They stuck a big needle in you. Do you remember?” — and she said “No” — that I realized she was scared because she didn’t understand WHY she was in pain. Once the x-ray was completed and all looked good, the nurse brought her pain medication and an ice pack.

I’m happy to report that the intense pain subsided very quickly after that. More good news: Her oxygen saturation quickly got up to 100% on only 2 liters of supplemental oxygen (she was on 4 liters yesterday and still only getting to about 94% at best).

They cleared her for discharge at noon, and I got my second scare of the day shortly after the nurse removed her IV port. I was packing up her things and Mom said from behind me, “What’s this?” I turned around and there was a spreading red stain on the sleeve and lap of her robe. Thankfully the friend who had come to help me out today has had CPR training and volunteers in a hospital ER, so while I stabbed at the call button she calmly slipped a glove on her hand and applied pressure to stop the bleeding. By the time the nurse responded to the call, it had stopped.

Which brings me to the title of this post. I am so fortunate to have a support system here. My wonderful niece, Sarah, came three days in a row to sit with her grandma for a few hours — bringing along her books so she could study for midterms in the hospital room — so that I could go home and get some rest or get some things done. Rora, who came today and helped me manage the discharge, is going to help Sarah get Mom to her three follow-up doctor’s appointments next week while I’m out of town. The owner of the board and care visited with her husband on Saturday and brought some things Mom needed from home, saving me a trip to pick them up. And then there are all the family members and friends who checked on us, prayed for us, offered support in so many ways. I love my “village” and I don’t know how I’d have gotten through the last five days without them. Thank you all.

Back in the hospital

It’s been a long 36 hours.

Thursday when I checked on Mom, her caregiver said her oxygen sats had dropped to 82 overnight and hadn’t gotten above 85 all day. They had her on 4 liters of oxygen and had done all the extra things the pulmonologist recommended, but nothing helped. I called the pulmonology office and was advised to bring her in first thing Friday morning.

She was seen by the physician’s assistant, who struck me as more cautious and thorough than the physician we saw on Monday. At first he was inclined to attribute the low saturation numbers to her anemia and poor circulation. But when I mentioned the chest x-ray done 11 days prior, he called the imaging center and got a copy. And as soon as he looked at it, he said “Take her to the hospital.” He gave me a copy of the x-ray results and his notes to give to the ER doctors, and off we went.

I think having that information helped — and it also helped that it was midday and the ER wasn’t too busy — because she was taken back while I was still parking my car. She’d told the PA that she felt “fine,” but by the time we got to the ER she was telling me she felt “yucky” and was so weak, I needed to ask for help transferring her from car to wheelchair. They did an EKG, drew blood, and gave her a chest x-ray and had her settled in one of the ER cubicles all within the first hour. A doctor came in, took some info, reviewed her labs and x-ray, and said he was going to get to work on her admission. It was the best, most efficient ER visit we’ve experienced to date.

(Side bar: One of the ER nurses who took her vitals and helped make her comfortable looked and sounded really familiar to me, but I assumed I’d just seen her on other visits to that ER… until she looked at me and said “Is your name Lira? We were in a writing class together.” Small world! And great memory – that class was three years ago.)

Mom’s one complaint was that it was too cold in the ER. Here she is tucked under her blankets.

Mom ER 2 - Oct 13 2017

There was the usual long wait for a room to open up, though, and it was five hours from arrival time until she was taken upstairs. I stayed to give her medical history and  make sure she ate a little dinner, then headed home and met my best friend for dinner, a couple glasses of wine, and some much needed decompression.

I was supposed to be at a workshop all weekend, one that I’d been looking forward to for months and that is only offered in my area once a year.  But there was no way I could leave her there without an advocate, so I sent a message to one of the teachers and explained why I wouldn’t be able to attend. I got about five hours of restless sleep, rolled over to check the time on my phone and saw a voicemail from the hospital time stamped 5:22 am. It was the night nurse, leaving me a status report before going off shift. Mom  “had an emergency” overnight, her message said, but it was all resolved. She was really struggling to breathe, so they had given her a stat chest x-ray and the doctor had ordered an extra dose of Lasix and turned the oxygen up to 5 liters. I popped a Vivarin tablet (no time for coffee), threw some clothes on, and headed to the hospital.

She was eating her breakfast when I arrived and seemed pretty chipper, all things considered. More blood was drawn for labs, and mid-morning she was taken down for a CT scan. She barely touched her lunch, so my lunch was half of her hamburger and a bottle of juice. I didn’t want to leave to get food in case they came to take her for the procedure to drain her lung, but that didn’t end up happening until around 2:30 pm.

They let me go down with her and I thought I’d just wait in the hallway as I had for the CT, but the ultrasound technician was really sweet and said I could be with her for the procedure. It’s called a thoracentesis and involves inserting a needle between the ribs into the space between the lungs and the chest wall, then draining the fluid through a thin tube. The ultrasound tech explained it, saying that they would numb the area first but warning that the numbing agent stings when it’s first injected. Then the radiologist came in and went through it with us again, complete with ennumerating the risks (the most dangerous being the possibility of the needle puncturing the lung and causing it to collapse). When he finished, he asked Mom if she had any questions. She said no and when he turned away to begin prep, she muttered to me “He already told me more than I wanted to know.” I stifled a nervous laugh.

She was sitting on the gurney, her legs over the side, leaning over one of those little bedside tables with a pillow on it. The tech had me stand on the other side of the table to be sure it didn’t move, and I held Mom’s hand. She was a real trooper, stayed still and didn’t even flinch when the needle went into her back. I closed my eyes, squeezed her hand and prayed silently. After a minute or so, the doctor got up and left the room with a quick word of instruction to the tech, who would monitor the draining fluid and remove the tube when it was complete. I don’t know if it was the relief of realizing that the hard part was over and her lung had NOT collapsed, standing stiffly with my knees locked, low blood sugar from lack of food, or all of the above — but I started feeling like I was going to faint. I tried bending my knees and closing my eyes, but when my ears began to ring I had to sit down and put my head between my knees.  (Dad, if you were watching over us today, now you know why I never had the least interest in a career in medicine…) It took perhaps five minutes for a liter jar to fill with a yellowish fluid, which was sent to the lab for tests.

They had replaced Mom’s hospital bed mattress with an air mattress while we were downstairs, which I assumed meant she would be in some pain and her back needed to be cushioned. She was very drowsy and kept dozing off, but she didn’t experience any pain for the four hours I sat with her after the procedure. When my niece arrived at 7:30 to spell me, I headed home to get a decent meal and some rest. Okay, the rest hasn’t happened yet because my cat needed attention after being alone all day and I couldn’t stand the pile of dishes in the sink for another minute… But the dishwasher is humming as I type and the bed is calling. Hopefully Mom is getting some sleep too. I’ll see her in the morning.

Mom asleep in hospital Oct 13 2017

It can turn on a dime

“Your mother is stable now, but at her age, it can turn on a dime.” That’s what the doctor from the ER told me when he called, two weeks ago now. Today I got a taste of what he meant.

I arrived at the SNF around 8:30 this morning, expecting to do the discharge paperwork and take her home. She was lying in bed in a hospital gown, but she sat up readily when I told her we needed to get her dressed so I could take her home. She mostly dressed herself (I only helped with fastening the bra in back), but when she was finished dressing she needed to lie down again — said she was feeling lightheaded. A moment or two later, she was taking big gulping breaths of air and saying “I can’t breathe!” I pushed the call button, reached over and turned the oxygen level up a bit, and sat stroking her hair and encouraging her to breathe slowly and deeply until the nurse came. Her oxygen sat was only 89, even with the increased oxygen she was inhaling. Her BP was high, but her heart rate was normal. The nurse brought her morning meds (which include blood pressure meds), along with an antibiotic and Mucinex, and went to notify the doctor on call. Discharge was put on hold.

Mom kept saying she didn’t feel right — “my insides feel quivery” was how she put it —  and when we were trying to explain that to the nurse, one of her roommates spoke up and mentioned that she had noticed my mom shaking in her sleep during the night. I asked if she could explain what she’d observed, e.g. was she shivering like she was cold? And she said no, it wasn’t like that. It was brief but strong tremors. I knew then that Mom definitely wasn’t going home today.

The doctor ordered breathing treatments with a nebulizer every 4 hours and a chest x-ray, and she’ll stay until he can read the x-ray results and reevaluate her, which will most likely be Tuesday (since Monday is a holiday). Mom was disappointed that she wasn’t going home, but felt poorly enough that she KNEW she wasn’t ready to be discharged.

We were so close. Sigh.

But whatever this is — if she’s still got fluid in her lungs or she’s picked up some new infection in the SNF, or whatever — I’m sure glad it showed itself before I took her home. Better that she stay where she is a couple more days than that we end up taking her back to the ER and going through all this rigamarole all over again.

We Persist

It’s been a challenging few days. Friday evening I arrived at the nursing center as the nurse was dispensing Mom’s evening meds, and I asked her to run through the med list with me — mostly to make sure Mom is getting her dementia meds. I was shocked when one of the medications she listed off was sertraline (brand name Zoloft), because Mom hasn’t taken that for over three years. I went to talk to the nursing supervisor to find out who had ordered that medication and learned it was started at the hospital. They were giving her TWO antidepressants at the hospital, he told me — Zoloft and Trazadone — but they discontinued the second when she was discharged to the SNF.

I knew something wasn’t right. She’d sounded unusually lethargic and depressed when I called on my lunch hour that day, and was saying things like “I just want to give up” — utterly out of character for my mom, who is nearly always cheerful. When I got home, I checked the discharge paperwork from the hospital and saw that they’d diagnosed her with Major Depressive Disorder (MDD). Umm, WTF?! She may have been sad, lonely or confused while in the hospital, but she most certainly does not have major depressive disorder.

I couldn’t do anything about that over the weekend because the nurses needed a doctor’s order to change medication. Yesterday I worked from home so that I could go over there first thing and talk to the physician’s assistant on staff. She wasn’t in yet, so I explained the situation to the social worker, who promised to relay my concerns to the PA and have her call me. I went home to get some work done and dropped by for another brief visit with my mom at lunch.

When I got a call from the nursing center in the afternoon, I assumed it was the PA calling in response to my request to discontinue Zoloft… and I was stunned when it turned out to be a case manager calling to tell me that the Medicare HMO was only going to cover three more nights and they would need to discharge her on Thursday. Wait, what? Will she get Home Health services? No Home Health, the case worker told me. The determination of the insurance was that Mom wasn’t making progress with her therapy, so they weren’t going to authorize ANY further physical or occupational therapy.

I felt like I’d been kicked in the stomach. Before she went into the hospital, she was ambulatory — getting around her home with a walker, though she’d started to need a wheelchair for excursions — and could transfer with minimal assistance.  Now she practically has to be lifted from the wheelchair back into bed, and they wan to send her home like that? How the hell is she EVER going to walk again without physical therapy?

The case manager and the social worker at the nursing center encouraged me to file an appeal of the denial of coverage. They gave me the phone number of the appropriate agency, and the social worker talked to me at length to document Mom’s baseline functionality. I was given to understand that winning the appeal was unlikely and that we might need to appeal several times just to get home health visits covered. I worried that we wouldn’t even get an answer on the first one before they kicked her out. But I filed the appeal, and I started gathering the information I will need to file a grievance against the hospital for misdiagnosing my mom and prescribing an unnecessary and potentially harmful medication.

Just before 5:00 pm today, I got a phone call from the woman who handled my appeal. I was braced for “We tried, and you can always appeal again.” When she told me something different, I was so surprised I had to ask her to repeat it. “She won!” she said, sounding a little bit astonished herself. “She won the appeal. Do you know how unusual this outcome is?”

I don’t know for sure, but I think this gives her at least another week of coverage for inpatient rehab at the nursing center, until the next weekly plan of care meeting happens next Tuesday. And I’ve been assured that when she is discharged, she will get home health PT. Meanwhile, the SNF physician agreed to step her down off the Zoloft, starting with a half dose today. I’m hopeful that she’ll soon be feeling more like herself.

And now I just need to get through my last two days on the job and an exit interview on Friday morning, and I can be there to keep a closer eye on her progress. I’m tired. Mom is tired. Nevertheless, we persist.

Learning to trust

All the astrologers who warned that the “eclipse season” this month was really going to shake things up were apparently not kidding around.  Just a couple days before the lunar eclipse on August 7, I learned that the position I’ve held with my company for almost 7 years is being eliminated and I’m getting laid off at the end of the month.  There’s a decent severance package, so I’m in the fortunate position of being able to take a little time to rework my resume and consider this unexpected change in career direction without needing to panic about how to pay rent… but I was still reeling a bit from the shock when…

Two days before the solar eclipse, I got a call from the owner of my mom’s care home. I was up in Portland visiting friends and we were in the car driving to meet some other friends for a fun event when my phone rang. When the owner of the board and care told me she had to call 911 for my mother, my stomach dropped to somewhere around my feet. I thought she was going to tell me my mom was dead or dying, I truly did. After learning that it wasn’t (necessarily) something immediately life threatening, I explained that I was out of town for a few days and asked her to call my niece. When my niece texted me that she was also out of town, I texted two other friends who have helped with Mom in the past. They were also out of town. As luck or fate would have it, ALL of my usual “go to” people were out of town that weekend;  even the pastor’s wife, the only  person from Mom’s church for whom I have contact info, is on sabbatical. That’s when I started melting down. Thankfully I was with two of my oldest and dearest friends, who let me have my freak-out and then calmly helped me start problem solving.

I take the responsibility I have for my mom’s care very seriously. I know she trusts me, that she now  looks to me for the kind of comfort and security she gave me when I was a child. It was absolutely unacceptable to me that she was alone in a hospital ER for hours, to say nothing of the fact that she wouldn’t be able to answer any of their questions about her medical history. But the hospital had been given my name as emergency contact and they reached out to me when they needed answers.  And at my friend’s suggestion, I reached out to the hospital chaplain, who kindly agreed to check on my mom in the ER and reported back to me that she was calm and lucid. The pastor’s wife forwarded my email to someone else from the church, who started a prayer chain and organized two volunteers to visit Mom at the hospital.  And none of it was ideal, but it was OK. Mom is OK, or she will be.

She was admitted to the hospital after nearly 7 hours in the ER, with a diagnosis of pneumonia and pulmonary edema. She had fluid in both lungs and was having difficulty breathing, but quickly started improving once they started her on oxygen and antibiotics and increased her Lasix dose. I spent a lot of my time in Oregon on the phone, managing her care as best I could long distance and keeping the family updated.

After three nights in the hospital, they were ready to discharge her to skilled nursing rehab. I was supposed to be home in time to manage that in person, to get her discharge instructions and be with her for the transition, but my flight was three hours late and the hospital had already made the transfer arrangement. I was pretty unhappy about that, and am still pretty pissed off that they let a dementia patient sign off on her discharge instructions and didn’t go over any of it with me via phone, but… again… while it wasn’t ideal, it was OK. She survived. I survived. We’re both feeling a whole lot better today.

I know that there’s a lesson in the confluence of these two events, losing my job and my mom having a medical emergency when I was out of pocket. I wish I could sum up that lesson neatly in a sentence or two, but right now all I know is that it’s about letting go of control and learning to trust.