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Another year, another holiday party

Today was the annual holiday luncheon at Mom’s care home. Yesterday I took her to get a haircut and roller set, Mom Headshot 12-9-17and the stylist did a really nice job. Mom looked lovely in her new sparkly green Christmas top, and she seemed to be feeling pretty good. She enjoyed the Honeybaked ham and, especially, the assortment of fancy deserts like macarons, ladyfingers and bon bons. And because it was a special occasion, they let her have 2 1/2 cups of coffee with her meal. (We just won’t tell the nephrologist about that.) My niece was late arriving, and it gets hard to make small talk with Mom these days, so I broke out the Scrabble game to keep us entertained.

Again, it was one of those parties where the guests only talk to the residents they came to visit and to the staff. But Jenny did make a point of introducing us to her brother (at least, I think that’s who he was) as he was seeing her to her room before departing. I also overheard another resident’s daughter talking about her 90th birthday next Thursday, the 14th. My dad’s birthday was December 14th. He would have been 92 this year. As I was sharing that with them, I realized that it was 10 years ago this month that he died. It feels like another lifetime. I was a different person back then, and so was Mom.

We both enjoyed catching up with Sarah, who took a break from finals week to come celebrate with her grandma.

Mom and Sarah 12-9-17

I’ve been a little short on holiday spirit this year, but it sure was nice to see Mom feeling festive and enjoying the celebrations. Mostly I’m just thankful that we made it through another year and she’s still kicking… or, as she always used to say, “perking right along!”

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More Like Herself

Happy to report that Mom is feeling better these last several days. We went back to church on Sunday, the first time I had taken her since her most recent hospitalization, and she enjoyed seeing all her friends from the seniors Sunday school class. I never know if she remembers them or if she just enjoys being made a fuss over whether she knows them or not. But she was all smiles, and that makes me happy.

Wednesday she had a follow-up with the pulmonologist, who pronounced her lungs “nice and clear” and says we can discontinue supplemental oxygen during the day (keeping her on 2 liters overnight), as long as they regularly monitor her oxygen level and it stays above 92.

This morning I picked her up to get blood drawn for the labs the nephrologist has ordered, and she was as energetic as I’ve seen her in months. When I asked how she was feeling, she said “Great!” And she remarked several times on how nice it was to get out of the house for a change, so after leaving Quest Labs I drove through a Starbucks for eggnog lattes and a cheese danish. We parked in the shade of a tree and sat in the car with the windows down, enjoying the pleasant breeze and each other’s company while we sipped our lattes and she ate her pastry. When I started up the car again to take her home, she thanked me for getting her outdoors and “allowing me to feel like part of the community.”

I pulled into the driveway, got her wheelchair out of the trunk and brought it around to her side of the car. She was already turned in her seat with her legs out, but when I pulled the chair up beside her, she looked at me and asked “What comes next?” I told her I would help her stand so she could get into the wheelchair. “What do I do now?” she asked. “You push yourself up,” I told her, “and I’ll help by giving you a pull.” That worked smoothly, but I was surprised that she’d needed to ask. This is how it is with dementia. She’ll be just like her old self… and then, suddenly, she’s not.

Thankful

Thanksgiving was a little different this year. I’ve had to accept the fact that the days when I could have Mom come and stay with me for an entire holiday weekend are over. The seven steps into my building are impossible for her to manage now. My best friend graciously offered her ground floor apartment for our co-hosted Thanksgiving dinner this year, and I was thankful that Mom was able to join us for the meal. Mom usually enjoys our lively gatherings, but wasn’t feeling very sociable this time. She was too tired to even concentrate on working a crossword puzzle and barely stayed awake long enough to eat. I took her back to her care home before dessert had even been served, but I saved her some pumpkin pie.

I brought the pie over today, right after lunch. Mom was, again, almost too tired to eat, which worries me. As I said to her, “It’s not like you to be uninterested in PIE!” She did finally finish her small slice, then almost immediately started dozing in her recliner. I sat with her for about an hour, watching figure skating on TV and chatting a bit when she woke up long enough to remember that I was there.

They’re tapering her off the supplemental oxygen during the day, per doctor’s orders, and her saturation has been staying around 94-95. But when I checked it today, she was only at 91. I sure hope this isn’t an indicator of fluid building up in her lungs again. Thankfully, we see the pulmonologist for a follow-up chest x-ray this coming Wednesday.

Despite the changes, I am deeply thankful that Mom is still here with me and that we were able to share Thanksgiving dinner.  I don’t know what Christmas will look like yet, but the only gift I need is to be able to share it with her.

Thanksgiving 2017

 

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

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.