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.

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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

Infiltration

The x-ray results should “some infiltration in her lungs,” so the doctor prescribed another course of antibiotics, which she started at dinner on Thursday. Saturday I thought she was turning a corner — her oxygen got all the way up to 97 — but she is still dropping into the low 80s during the night, even though the oxygen gets turned up from 3 to 4 liters overnght. And her feet and ankles are still swollen and she’s still coughing. So this morning I called Dr. G again, and he pushed through a rush referral to a pulmonologist.

Their next available appointment was on Wednesday, but when I explained the situation they said I could bring Mom in as a walk-in this afternoon. We spent two hours at their office, which is about four hours less than the minimum we would have spent at an ER, so no complaints here. The pulmonologist said she coud hear a little bit of wheezing in Mom’s lungs so there’s definitely some fluid, but she said it’s not necessarily caused by an infection. She increased the Lasix dosage and ordered more frequent breathing treatments. And that’s that. Call back if it doesn’t improve.

Mom has been feeling pretty good, in spite of the oxygen difficulties, but today she was tired and grouchy and her caregiver said she had barely touched her lunch. So I’m still feeling a little anxious and wanting to watch her closely… and I guess I’m feeling a little tired and grouchy myself.

Stalled

Mom’s recovery progress seems to have stalled. Friday when the physical therapist was working with her, in the half hour or so he had her off oxygen, her sats dropped from 93 to 83. I called Dr. G’s office about that and he ordered a chest x-ray. Until we get the results we’re to keep her on oxygen 24/7.

Yesterday I was able to take her to church for the first time in 6 weeks. She was happy to be there and particularly enjoyed the attention from her friends in the seniors Sunday school class, but she had some trouble transferring from the wheelchair to the pew and (especially) back again. When I got her home after the service, she was ready for a nap!  I noticed when I picked her up for church that her left hand  and wrist were very swollen and puffy. It had improved a little by the time we were driving home, so I decided it wasn’t worth spending our Sunday afternoon at Urgent Care when I’d be seeing her again today.

She seemed tired today, much less perky than she was for church yesterday. When we pulled in to the parking lot for the Imaging Center, I checked her O2 level and it was only 89 — even though she’d been continually on oxygen. Feeling thankful that we were getting the x-ray done, I finagled the wheelchair and the portable oxygen tank inside and even managed to fit both of us and the equipment in the small dressing room, so I could help her get undressed and into a gown. When the x-ray techs told me she was going to have to stand while they took the images, I explained that her legs are weak and her balance is very poor — so they gave me a heavy lead smock and let me stand beside her, my hand on the small of her back to keep her steady. Mom clung to the sides of the board as if to a life raft in deep water, but she managed to stay standing with her back straight and followed their breathing instructions while they took the images. Her PT would have been proud.

The swelling in her left hand and forearm was about the same as when I left her yesterday, and I noticed her feet are now swollen also. While we were waiting our turn, I called the cardiologist’s office about that. Her doctor is off today, so the receptionist gave the message to a nurse who consulted with one of the other cardiologists and called me back. They said it “doesn’t sound like a heart issue” and recommended she increase her Lasix dosage for the next 48 hours and call back if the situation hasn’t improved by then.

While I’m relieved they don’t seem concerned about it, I’d sure like to know what’s going on. Between this and the difficulty keeping her satured with oxygen, it’s obvious that something isn’t right. For now, we wait.

Self Care

When my job ended (at the end of August), I gave myself a gift. I bought a month of unlimited yoga classes at the studio where I’ve been doing (mostly) restorative yoga and the occasional workshop for the last year or so. With the combined stress of Mom’s recent hospitalization and suddenly finding myself unemployed, I knew it was going to be important to take time for self care.

In the last 30 days, I’ve taken 21 yoga classes. That’s 4 more than I did in the previous 6 months! I can feel the difference in my flexibility and in my stamina, and when I saw my chiropractor last week she said she could see the difference in my posture and commented on how “loose” my body was.  I love how I feel after yoga, energized and alive and fully inhabiting my body. My mind is clear, I’m breathing more deeply, and I sleep better than I have in a long time. Also, the routine of yoga classes gives a rhythm to my days during this time between jobs.

I’m committing to continuing my 5x/week yoga practice until I start my next job, whether that’s a month from now or six months from now.

I’m also committing to eating healthy food, getting 7-8 hours of sleep each night, and sticking to a sleep schedule. It would be so easy to stay up half the night and sleep my days away… but then I’d miss my favorite yoga classes. So I’ve kept myself on a schedule, to bed no later than midnight and out of bed by 7:30 each morning. It feels good.

Taking care of myself makes me a better caregiver for my mom.

 

If it’s not one thing…

Friday was one of those days. Mom had her first session with the physical therapist, and it did not go well. He had her lying on her back on the bed doing leg stretches and she was having trouble breathing, and he got snippy with me because I “undermined his authority” by responding to her needs without clearing it with him first. Even with the oxygen cannula in, her sats didn’t get above 91 and she was laboring so hard to breathe that he cut the session short and let her go back to sitting in her recliner.

I was so relieved that she already had an appointment with the cardiologist that afternoon because I felt sure it was a CHF (congestive heart failure) episode. But the cardiology PA who treats her didn’t hear any congestion in her lungs or heart. They had the results of Monday’s labs sent over and noted that she’s almost dangerously anemic, which might explain the difficulty getting enough oxygen even when the fluid build-up is gone. Since we are seeing the kidney specialist next Monday, and this is something he’s been tracking, cardiology PA left it for him to determine the best course of treatment. I took Mom home and she almost immediately fell asleep in her recliner.

Worn out from a stressful day, at 9:00 p.m. I got into my pajamas, poured a glass of wine and settled in for a West Wing marathon on Netflix. At 9:30, I got a call from the owner of the board and care: Mom had a nosebleed that thet couldn’t stop and they were taking her to the ER. I met them there shortly before 10:00, and it was a LONG night. They got her into triage very fast, considering the unusually large number of people in the waiting room, and had a quick temporary fix to stop the bleeding.

Mom nosebleed ER picBut then, as you can see in the photo, they sent us back out to the waiting room. Where we waited… and waited… and waited. It was cold in that room and Mom was thankful for the cozy flannel pajamas, though she was a little embarrassed about being out in public without her dentures in.  And though she complained that the clamp on her nose was uncomfortable, I would have been thankful to have one myself when a young woman sitting across from us suddenly vomited.

It was three hours from the time we were checked in until Mom saw a doctor. He removed a massive blood clot from her nose and thought that would solve the problem, but the bleeding started up again. The culprit, a broken blood vessel, was too high up in her nose for the doctor to see or cauterize, so they had to insert a balloon catheter in her nose to stop the bleeding — a last resort because it’s “uncomfortable” (the doctor’s word). Mom cried out in pain when it was inserted and kept exclaiming that she couldn’t stand it because it hurt so much.  It was 3:00 a.m. by the time this happened, and 3:30 by the time we were leaving the ER. The owner of the care home and her husband had waited with us the whole time, and they drove Mom home once she was discharged. I got in my car and immediately began to sob from exhaustion and helplessness at not being able to ease her pain.

I got about five hours of sleep before I got another call from the care home telling me that Mom had pulled the balloon halfway out during the night. I drank a big mug of strong coffee, threw some clothes on, and headed over there. The balloon catheter was supposed to be left in place until Monday, when we had been directed to see an ENT doctor to remove it. I called the ENT office and left a message for the on-call doctor, who called me back quite promptly and said that we could leave it as is unless it started bleeding again. Thankfully, that did not happen. And the balloon didn’t hurt when it was only half inserted, so Mom was much more comfortable for the duration of the weekend than she would have been otherwise.

All’s well that ends well, I guess.

It happens…

We saw the neurologist today. When Mom was in the SNF and would complain about feeling “quivery inside,” when her hands shook as she tried to hold a glass of water, when she couldn’t keep from bouncing her feet constantly… I kept thinking, “It’s OK, Dr. O will help her with this.”

Dr. O spent all of five minutes with us, and when I described Mom’s complaint about feeling quivery inside, she merely nodded and said “It happens.” The medication Mom was taking at bedtime before for restless legs made her too sleepy (so it was difficult to get her out of bed before 10:00 or 11:00 a.m.), and we agreed not to put her back on that unless the restless legs become intolerable. We are going to try increasing her dosage of Sinemet to see if that helps the tremors — but Dr. O said the caregivers will have to watch her closely because if the increased dose is too high for her body, the tremors will get worse instead of better. So grateful she lives in this small board and care home with attentive staff who WILL notice any changes. Otherwise I’d be back to camping out with her almost 24/7.

I was a little disappointed by the lack of attention we got from Dr. O, but I guess it’s a good sign that she wasn’t too worried about any of what we reported. And Mom was happy to get home. Short trips in the car still wear her out, and she dozed off in her recliner almost as soon as we got her in it. I kissed her forehead and headed out…

… And five minutes later I was ringing the door bell again, after having phoned AAA because my car wouldn’t start. Turned out to be a dead battery, and one hour and $126 later I was back on the road. So thankful it didn’t happen until AFTER I got Mom home! It’s warm and muggy today, and I can’t imagine making Mom sit in the car (or in her wheelchair in a parking lot) for an hour. Much better that I got to spend most of that hour sitting by her side in air conditioned comfort.

(Sh)it happens… But it could always be worse. And we get through it, together.