The last 3 weeks have thrown all of us for a loop. It all started on Feb 17th. Mom has been sick and having a hard time bouncing back. Some of these are my thoughts through the whole thing and some are text messages shared between Dad, Jenny, Jeff, and myself.
Friday, February 17th
We first found out about Mom being sick when we got a group text from Dad. "Just so you know, I've taken Mom to the hospital. She hasn't been feeling well for a few days. She had blood work done on Monday and then again on Tuesday, she was acting strange yesterday and wasn't any better this morning. Went to the doctor this morning and they suggested we go to the ER. They checked her and had her admitted. Had a kidney specialist come from U of U. Evidently her kidney function is not good. They are going to do dialysis for 3 days to correct her levels. We are in the intermediate care unit. They're just getting her ready. Doing 1 1/2 hrs. dialysis right now, and a couple hours tomorrow. 3 hours Sunday, and probably Monday too. She's kind of out of it but doing OK so far."
After reading those messages, I didn't know what to think. Nor at the moment did I want it to ruin our family vacation. I brushed it off, so the kids wouldn't see the worry on my face and waited to process this news until we got home for the night. Once everyone was asleep, I reread the message and tried to truly process what was going on. I then got a call from Jenny. She asked me if I understood what was going on. Apparently, Jeff thought Dad was talking about Grandma Hall. I told her that I took the message as Mom, and she proceeded to tell me a little bit more about what had happened. As I listened to her, I began to worry more. What Mom is going through is the same issues that Grandma Shupe had before she died. That thought was not comforting at all and all we could do right now was to pray and hope for the best.
Saturday, February 18th
"I talked with the specialist. Things could be more serious. It may take up to 3 months for her kidneys to recover, if at all. So, the plan right now is 4 days straight then every other after that for a time. Right now, she's in and out mentally. The doctor said that's the toxins in her blood. Should clear up once they catch up with the dialysis."
Sunday, February 19th
Monday, February 20th
Update from Dad: Better enough that they are skipping dialysis today, they are keeping her another night. Her heart rate was 150 to 180 for a time, gave her medications for that. Physical therapy will evaluate today and make recommendations for discharge, home, home care, or nursing facility, Scheduled dialysis for tomorrow. Blood work first, if it looks okay, they'll skip it for that day. They'll test each day before dialysis. Blood work and urine output determine if the kidneys are working, so skipping is a good sign.
Tuesday, February 21st
Waiting for blood work from the lab. Doc said yesterday's number looks good. He said it shows they are doing something. If they're still good, no dialysis today either. He wants her to stay another day or 2. We signed her up for a facility in Roy for a week when discharged. They're giving her intravenous antibiotics for a blood infection.
Wednesday, February 22nd
"Waiting on results from the Doctor to see if she can leave soon...Good News Nephrologist says she's good enough to go. Follow up on March 16th. We're just waiting to see when she can be transferred to Heritage Place in Roy. Canceled the last day of dialysis since she was doing so well, felt comfortable with her making it to the follow-up appt on March 16th."
Thursday, February 23rd
"Looks Happy...NOT. Doesn't like the rehab facility" Not happy because they were supposed to go to a rehab facility on Harrison BLVD, but apparently, they didn't have any openings and they didn't let Mom and Dad know before she was transferred to the place in Roy.
Friday, February 24th
Mom seemed better today, that's even after I woke her up. She seems very bored though. She seemed to be all there, just tired.
Saturday, February 25th
Had a good night's sleep.
Monday, February 27th
Mom sent a "help" message on GroupMe, and I sent a message to Jeff and Janny to see what was up. Jenny called her multiple times until Mom finally answered. The she needed was on her Diamond art kit that Jenny had gotten for her. Jenny told her that she would come by later to help her.
Tuesday, February 28th
After a few days of trying to message and call Mom, Dad finally answered and gave her the phone. We talked for a little bit while I waited for Gabbi to get done with Choir practice. When Gabbi got in the car she visited with Nana as well. It was a good conversation and she seemed to be in good spirits despite sounding very hoarse.
Wednesday, March 1st
"FYI, I went this morning, and they told me mom tested positive for COVID. I didn't stay. Before I left, she said she was just tired but did have a cough during the night." We asked if this would set her back on her recovery and the care workers didn't know if this would push back her recovery or not. All they told Dad was they use a 10-day clock, which means nothing for her recovery, that's the quarantine window for those who test positive for COVID. Dad found out that the lady next to her had tested positive and that's who Mom got it from (seeing how no one else around her had it).
Mom testing positive led to discussions back and forth about leaving Mom at that facility or taking her home. Dad said that he had taken her to the bathroom that day and physically he's worried about taking her home because she insisted on using the wheelchair instead of walking with the walker. He said he was going to give her 2 more days and planned to take her out on Friday if they would clear her.
Thursday, March 2nd
Jeff went to visit Mom at the care facility and said she was pretty loopy. She thought Jeff was there to take her home and when she found out she wasn't, she got really sad.
Dad said that he planned to check her out on Saturday, that way they could have an extra day to watch her, plus she had one last treatment that afternoon. They can at least check her blood pressure and oxygen levels. Waiting on the results of the bloodwork they took this morning.
Friday, March 3rd
Jenny visited Mom today. Said Mom feels pretty confident that she would be able to get around just fine with her walker and some railing installed in the hallway and bathroom. She also wanted another railing installed in the stairwell to help assist her up the stairs. Said she was pretty hilarious tonight and even called her crazy pants. Mom said she really wanted a Wendy's kids meal and a frosty since she hadn't eaten in 6 weeks. Jenny said she just laughed.
Doctors haven't cleared her to leave today, they had to finish another round of antibiotics, but once that is done they will run her numbers again, if they don't see a problem, they will agree to let her come home.
Saturday, March 4th
Flew home.
Met up with Mom, Dad, and Jeff at the rehab facility. When we got there Dad was talking to the nurse about her numbers to see if we were cleared to take her home. While Dad was talking to the nurse, we were in the room talking to Mom. She got all weird and told us to make her a promise to let her go if it was her time. She then proceeded to tell us about a weird dream she had about hearing a voice while reading a story to a little kid, telling her that everything and everybody would be fine. We brushed it off and changed the conversation. So far, her attitude in this whole endeavor had been a problem, and talking like that wasn't going to help.
Dad then came back in the room and told us that they had messed up on Mom's labs (apparently, they were scanning the wrong wristband on her arm and so all the labels were mismatched and mislabeled. By the time they had figured it out, the blood was too old to process) and they didn't have the numbers to ensure that she'd be okay going home. Jenny then commented on how pale Mom looked and Dad said that the nurse had brought up that same concern. For a normal person the hemoglobin level is supposed to be at or above a 12, when you reach a 6 it is critical and in need of a transfusion. Mom's previous levels, when they did her labs the time before last, she was at a 7.2, but by the look of her now, they were worried that she had dropped even further. Since they had messed up on her labs, they had no idea what her numbers were and we all insisted (Jenny, very Karen-like) that she be taken to the hospital since they obviously couldn't do anything for her there. So, they called 911 and they transported her back to the hospital.
At the hospital, they checked her into the ER to assess her needs to see if she really did need a transfusion. They took some blood and put a rush on it. Mom was not happy about that considering she had now had blood taken 3 times today. Her bloodwork confirmed that she indeed needed a transfusion. So, they got her set up and ready to do the transfusion. They also gave her an injection to help with blood production. After the transfusion, they decided to admit her for observation and for another round of blood production injections. We took our turns visiting her in her ER room, but once they had taken her to a regular room in the Intermediate Care Unit (not well enough for just the medical care unit, luckily not bad enough for the Intensive Care Unit), the rest of us went home for the night.
Sunday, March 5th
Dad sent some info on Mom this morning. Her numbers were good, GFR 34 and creatine 1.68. Better than she's had in a while. Mom did some PT this morning, could only walk from one side of the bed to the other, and had shortness of breath issues, not legs. Otherwise, ok.
Went to church with Jeff and Tiffany. At 3 we went to Jenny and Brian's for family dinner. When we were done eating, we all went up to the hospital to visit with Mom. When we were there, we waited in the makeshift waiting room (a room that had obviously been closed when COVID hit, so it became a catch-all for random medical and office equipment) for our turn to visit with Mom. 3 people could be in with her at a time. When everyone had visited with Mom, we all went our separate ways for the night since Mom wasn't coming home.
Monday, March 6th
Since Mom wasn't home, I messaged some friends to see if any of them could get together. Shantelle and Christy responded, and we were able to go out for breakfast at the Rusted Spoon in Perry. When we were done, we all had some errands to run and then planned to meet up again for lunch at Cafe Rio. We stayed as long as we could before they both had to leave and pick up their kids from school. Later that evening I went to Christy's house to hang out and watch a movie.
Throughout the day, Dad was keeping everyone posted on how Mom was doing. Mom is about the same today as she has been previously. Wasn't able to talk to the Doc directly, but was able to talk to the nurse, who didn't have much info. Eventually, Dad got some answers, she had an injection this morning to help again with blood production. They think the low blood (hemoglobin) is from the kidneys breaking down the blood. Testing blood right now. If it's okay, she can go home tonight with home health care. Bloodwork showed that her numbers were good enough for Mom to come home, but just in case, they are keeping her for one more night, plus the doctors wanted to do another blood production injection just to ensure that she doesn't have another hemoglobin issue when she finally gets to come home.
Tuesday, March 7th
Today's the day, Mom gets to come home. Since Mom wasn't coming home till later, Christy and I went to a movie and did some shopping. We grabbed some lunch at Jake's over the Top and then went to the mall. We watched 80 for Brady and we laughed so much, it was great. After the movie, we went and did some shoe shopping. I didn't intend to get anything but found a really cute pair for clearance that I didn't want to pass up. It was a simple and fun afternoon.
Jenny called and talked to the nurse to make sure everything was in order. She said her hemoglobin number is 8.0 on the low side, but better than usual. GRF is 42, Creatine is 1.4 which is good and coming down. Did ok walking to and from the bathroom, not sure about PT. They hadn't put anything on the computer. Discharge orders weren't in her computer file yet, they are going to message the Doctor to make sure she is good to go home. Reminded her the plan is to have a home healthcare nurse when she gets home. The nurse said Applegate Home Health accepted the order and should call within 24 hours of discharge.
Dad had to work today so Jenny, Jeff, and I planned to meet up at the hospital at 6 to bring Mom home. We'd be waiting for Dad when he got home. They did another round of blood production injections and bloodwork before she could come home. Jenny went to the hospital early since she was close by after some training in Farmington. Knowing that Jenny was heading early, I went ahead and did the same. When I got there, Jenny was visiting with her. She seemed great and excited to be leaving. Jenny was combing her hair in preparation to leave. As it got closer, we were asked to leave the room so the nurse could take her to the bathroom and get her dressed to come home as well. When she was ready to go, we were given her discharge papers and the nurse brought in a wheelchair. After we were given the green light, the nurse helped Mom to the wheelchair, and we all walked to the front doors.
Once outside, the nurse helped Mom get into Jeff's work van. We got her buckled, wrapped her in a blanket, and ready to go home. On the way home we stopped at Wendy's to get her a hamburger and a frosty because she told Jenny that's all she had wanted for a while now. After our stop at Wendy's, we went home and waited for Dad to get off work. Mom didn't want to go into the house without Dad or without his help. While we were waiting, we got some folding chairs into various positions so she could rest along the way. When Dad pulled into the garage, he came over to Mom's door and asked her how she was doing. She said fine, and then he told her it was time to get out of the van. She was hesitant but let him pull her legs out of the van to get ready to walk to the door. She had to rest for a minute before standing. Dad finally got her out of the van, and she only went far enough to sit in the chair next to the van door. Dad tried to get her to go farther, but she wouldn't. So, we let her rest. After 5 minutes Dad told her it was time to get moving before she got too cold. She didn't want to. He helped her stand up, but she instantly sat back down. He told her again that she would get colder the longer she sat there, and she just looked at him. After 10 minutes, Jeff tilted her chair back and literally dragged her to the back door. She looked freaked out, but when she saw where she was, she was okay with the fact that she didn't have to walk to the door herself.
Now at the back door, we really needed her to help out with moving. Dad forced her to stand up, but she sat back down. Jeff again tilted her chair back and Dad grabbed the front legs of the chair, and they picked up/dragged her onto the landing just inside the door. She was in the house but now was the hard part, the stairs. We first had her stand up and turn around, so she was facing the stairs, then she sat down and rested. After a few minutes, Dad got her to stand up with Jeff on one side and Dad on the other, they were going to help her go up the stairs. Mom threw herself back down in the chair. She didn't think she could walk up the stairs at all. We bounced around different ideas, a lot of them as a joke, but Mom kept saying "OK." We couldn't believe that she was agreeing to be dragged up the stairs on a door, a table, a mattress, and a furniture dolly. At one point she even said she would throw herself down on the stairs and they could just drag her up. We were at a loss on how to get her up the stairs.
Dad then came to the door with the hammock from the trailer. In all the years we have had the trailer, we have never used it as a hammock for someone to sleep in. I don't think we ever used it for anything. Dad pulled it out because it looked like a gurney. It was over 50 years old, so we were worried that it might not hold her weight while carrying her up the stairs. I got to be the Guinea pig. Dad laid the hammock on the lower set of stairs, and I laid down. With Dad at my feet and Jeff at my head, they picked up the hammock to see how it would work. They put me down and as we talked about whether or not it would work, Jenny called Brian so he and Kayden could come and help. The hammock did just fine with my weight and with this being the only way we could think of to get her upstairs, we asked Mom. She of course said "OK."
When Brian and Kayden got to the house, we laid the hammock on the upper set of stairs and placed a blanket on top. Then Dad helped Mom turn around and slowly helped her sit on the highest step she could manage without much movement. After she sat down, they carefully helped her lay back and the 4 of them picked up their ends of the bars and lifted her up off the stairs. They started to walk up the stairs and we were all happy to see that it was working great. It was working so well, that they didn't stop there and went all the way into the bedroom and up on her bed. At that point they had her roll over so they could pull the hammock out from under her. Dad helped her get situated in her bed, hopefully for the night. Luckily that was the case.
Before we called it a night, Dad and I went through all of Mom's prescriptions to see what she had to have and when. We also compared those to what they were giving her at the hospital. If she didn't have it at the hospital, we weren't going to give it to her at home until Dad had a chance to talk to her primary care physician. We had to type in the names of all of her prescriptions to see what they were for and then compare them to the medications she was given at the hospital. It was quite the process, but at least we now know what she should have and how often she should have them. That has been one of the concerns that Dad wants addressed by her primary care physician. She obviously hasn't been taking them like she is supposed to, especially the Tylenol and other medications for pain. Hopefully, Dad's meeting with her doctor will help to make sure her kidneys bounce back and don't cause her to have to be on dialysis for the rest of her life.
Wednesday, March 8th
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Dad had to work today, so the plan was for Jenny to come over and work from home while we figured out how the days would go with Mom being home. I would be the main caregiver, but she would be there to help where needed. The morning started out really well. She got up with no problem around 9 and first things first, went to the bathroom. We wheeled her into the bathroom with no problems. It was a little bit difficult to get her from the chair to the toilet, but once we went for it, there were no problems. When she was done, she was up and wanted to get cleaned up. So, we had her back in the chair and had her lean forward so we could wash her hair. After we were done in the bathroom we went back into her room where we dried it and even styled it. She had a big smile on her face. When her hair was done, we got her out of her nightgown and into some clothes. When she was ready for the day, she said she was hungry. She wanted her frosty that she never ate last night. She wanted it in her bed, but Jenny told her that she had to stay seated to have it. She wasn't happy about having to sit up to eat it, but she eventually stopped arguing and took the frosty.
While she ate her frosty, I cleaned up her room. She asked if we'd clean a few things up because it was bugging her. When I finished cleaning, she was ready to get out of the chair and back into bed to rest. We convinced her to do her PT before getting back in bed. She reluctantly agreed and when she was done Jenny helped me situate her in her bed. Back in her bed, she quickly fell asleep. I was surprised how quickly she fell asleep. I guess getting cleaned up and eating took a lot out of her. After a few hours, she woke up and had to go to the bathroom. This time instead of the wheelchair, she used the walker and walked to the bathroom. It was a lot easier than the chair. When she was done, she laid back down. She watched a show for a little bit before going back to sleep.
While she was watching her show, Jeff showed up and started working on a ramp. We needed an easier way to get her in and out of the house since she couldn't really walk down the stairs. He brought all the materials and tools needed to put together the ramp. He even got some help from Bryce Sherwood towards the end. It turned out great and we even tried it out. Jenny and I took turns being the guinea pigs to test out the chair on the ramp. It was clear that we definitely needed a wheelchair with bigger wheels on the back to make it more smooth and ensure that the wheels didn't slip. Jenny was on that one and was happy to report that she had a friend who could loan us one for a little while.
When Jeff was done, we helped him clean up and both Jeff and Jenny headed home while I got things ready for dinner. Dad had told me that he was going to do shepherd's pie, so I went ahead and got it started. By the time Dad got home from work and the store, it was ready to go. He then took Mom into the bathroom before coming out to the table to eat. I was surprised that she agreed to come out to the table. She told Jenny and I in the hospital that she wouldn't come out to the table. She'd eat on the couch with the small white table, but definitely not at the table. When we were all at the table, Dad blessed it and we all started to eat. I was impressed that Mom actually ate it, even better she ate all of it. That was a lot more than I thought she would. When she was done, she was ready to get back to her bed. I helped clean up and dinner and Dad told me that I was done for the day and to go downstairs. I agreed, but he had to go to bed first. I told him I would check on her at 10 to see if she needed to go to the bathroom one more time before going to bed. He agreed and went to lie down while I went downstairs and got ready for bed. A little after 10 I went upstairs to check on Mom. I tried to wake her to see if she needed to go to the bathroom, but she wouldn't wake, so I left her asleep and went down to go to sleep myself.
Thursday, March 9th
I met Dad upstairs at 6 for the rundown of how the night went. He told me that Mom had actually gotten up by herself to go to the bathroom. Dad had only gotten up when he heard her walking down the hallway towards the bathroom. I was impressed. Hopefully, that meant she really was on the mend. After Dad left, I checked on Mom and she was still asleep, so I went downstairs to get cleaned up for the day. The morning went by slowly. She slept until almost 10. At that point, she woke up because she needed to go to the bathroom. I went to grab the walker and she said no. She wanted the wheelchair. She thought she was too weak to walk to the bathroom. When we got to the bathroom, I tried to help her get out of the chair and after three attempts, she was done. She told me to find out where Jeff was and have him come and help her. I told her that I would be able to help her just fine, but she said she was too scared. We took her back to her bedroom and she sat in her wheelchair until I was able to send a message to Jeff. Luckily, he was just up by Jenny's house and when he was done, he stopped by.
When Jeff came in, I asked Mom if she wanted to go back into the bathroom to try and go, but she never actually went. She said no, just that she wanted to get back in bed. Jeff helped her get out of the chair and into the bed. Together we helped her situate herself into a comfortable position and left her alone. I asked her if she wanted something to eat and she said no. No surprise. I thanked Jeff and he went on with his day. After an hour, I asked her again if she'd eat. She reluctantly said she'd eat a hardboiled egg. I went and made her one. I was surprised that she actually ate it. When she was done, she went back to sleep.
The home health care nurse came a little while later with Jenny shortly behind her. She introduced herself and explained what her role was in Mom's care. She also took her vitals and got the low down on everything that happened the last week or so. She seemed really nice and positive enough for a good outcome for Mom. She also told Mom that she wouldn't be the only one who would be coming by either, she told us that there would be an occupational therapist as well as a physical therapist to help in her recovery. Mom seemed okay with that, and she would have to be if she ever wanted to be left alone again. When she was done, she left us with a folder full of information and two appointments, one to come and take her bloodwork tomorrow as well as on Tuesday. After she left, Mom laid back down and went to sleep until Dad came home from work.
Now that Dad was home, I gave him the rundown of the day and all the information that the home health care nurse shared. Afterward, he went in to talk to Mom and see how her day went. Things seemed to be going well until Dad tried to get her to sit up. She told him that she already had for the day and didn't have to again. I reiterated what Dad had said and reminded her that that is what the home health care nurse had said as well. She still refused. Dad let that slide for a bit and asked her about eating. She again said no. He told her that if she didn't have some dinner, she had to have the protein shake. She hates those, so she agreed to have some dinner. Dad warmed her up some shepherd's pie as well as some of the chicken broccoli soup that Jenny had made. She messed with it for a little bit before having 2 maybe 3 very small bites. When she was done, we left her alone, she wouldn't cooperate anymore. We went into the front room and flipped through the channels on the TV. Instead of staying and watching the game with Dad, I said goodnight and went downstairs to go to bed.
Friday, March 10th
Since Dad was home today, he told me that I had the day off and that I should get out and have some fun. Since I had already been able to see Shantelle and Christy, I reached out to Taycina. She was free and we planned to go to Brunch at No Frills Diner. I had never been there before, nor did I know it even existed. She came and picked me up and they were able to get us a table in no time at all. We stayed there a lot longer than I thought, but it was just nice to visit without kids running around. Afterward, instead of going home, we picked up a few things and then went back to her place.
We were visiting for a little bit when I got a text from Dad. He apologized for bugging me but asked if I wouldn't mind picking up Mom some equipment to help her around the house. The physical therapist was there and while assessing her, these items were talked about to make things easier. We picked up a shower bench as well as a bed cane to help her get in and out of bed. We stopped home to drop them off and while doing so Taycina was able to come in and visit with Mom for a little bit. Afterward, we went back to her house. We played some games and eventually decided to go to a movie. We went to the Walker Theater and watched 65. It was a weird movie, but it was still fun to be out. After the movie, Taycina took me home and we ended up visiting for a few minutes in the car before going in and going to bed.
Saturday, March 11th
Dad was home, but I was there for support and to help if needed. After getting ready for the Day, I went upstairs to check in and see how everything was going. It seemed to be going okay, but Mom still wouldn't take anything to eat. Tiffany and the kids came and brought us some breakfast from Kneaders. Dad tried to get Mom to eat an egg that they had bought for her, but she didn't like it. Dad then told her that she had to have some of protein drink since she wouldn't eat the egg. She drank about 4 oz. and laid back down. While she was lying down, we chatted as we finished our breakfast.
A little while later Aunt Cindy came to visit with Mom. Their visit was going well, she even got Mom in the wheelchair to come out to the kitchen table and visit with all of us. While at the kitchen table, Cindy showed Mom some hair things that she brought for her. They were cloth headbands. Cindy was helping her put them on and fluffing her hair. When she showed Mom in the mirror what she looked like, she gave the funniest face. She didn't like it at all and let Cindy know that she wouldn't wear them. Cindy put them away and brushed her hair instead. We visited a little bit longer and then the doorbell rang. That was the notice that it was time for visitors to leave. Mom and Dad had an appointment with a company that would possibly be turning the bathtub into a walk-in shower.
While they had that appointment, I went and visited with Grandma and Grandpa Hall. They seemed pretty good too, which was great. Much better than the last time we were here to visit with them. After an hour, I went back home to see how everything was going. Mom was asleep and Dad was in the front room watching TV. After a few minutes, Dad had gone in to check on her. He was trying to get her to sit up so she could take big breaths like the home health nurse said. She refused. He tried to get her to eat something, but she refused. He tried to get her to go to the bathroom and she refused. He left the room to catch his breath. I just stood there in the kitchen not sure what to do. The next thing we knew, she was on the couch. Neither of us had any idea that she had moved and had sat down on the couch by herself. She didn't call for help. Dad went in and tried to get her to drink some water since she hadn't had hardly anything all day and she refused moving her face back and forth as he tried to get her to drink.
I felt so bad, but there wasn't much I could do, I went and sat down on the couch and waited. She finally said she needed to go to the bathroom, so Dad helped her to get to the bathroom. The next thing I know, Mom is yelling at Dad. After going to the bathroom Dad was trying to help her off the toilet and she kept yelling at him to take her to the bathroom. It was heartbreaking. Dad kept telling her that she was already there and had already gone, but she kept yelling at him to take her to the bathroom. He explained it to her again and again. He tried to help her get up. She yelled at him again, this time to let her go. It was hard to hear her yell at Dad when all he was trying to do was to help her. He finally got her to stand up and into the wheelchair. Dad took her back into the bedroom to help her clean up.
As she was lying on the bed, she was just staring at the ceiling. Dad was asking her questions, but she wasn't answering. We weren't sure if she was incoherent or just wasn't understanding what Dad was asking her. These were simple questions, but she seemed so confused. Dad said this was how she was acting when he took her to the hospital the first time. He decided to call the Home Health Nurse to see what she could do or suggest. He told her what was going on and she told him that all she could do was come and take her vitals. If he really thought there was a problem, she suggested that he take her in to be checked out. Since Ogden Regional doesn't have an after-hours care center, he had to take her back to the ER.
Dad called Jenny to let her know and to ask Brian for some help getting her out of the house and into the car. I pulled the ramp out that Jeff had made on Wednesday, while Dad got Mom dressed and into the wheelchair. He grabbed a few things that they might need, and she was ready to go. When Jenny and Brian got there, they worked together to get her down the ramp, out the door, and into the car. Back to the hospital, Dad got her checked in at the ER. They got her back to a triage room and checked her vitals along with doing some bloodwork to see what was going on. While waiting for her labs to come back they gave her IV fluids and antibiotics just in case she might have something serious going on. It was protocol.
Dad came out and said that they were treating her with a sepsis protocol, meaning they were doing what they could to normalize her blood pressure, heart rate, and oxygen levels. Currently, her blood pressure and oxygen are low, and her heart rate is high. When they got her labs back, they decided to admit her...again. The number we were worried about was her GFR (number determining her kidney function) which had gone down from 42 when we brought her home to 18 and the creatine had gone up from 1.4 to 2.86. We couldn't believe it. Her numbers were great on Tuesday, and they tanked again. Not to mention her white blood count was way up meaning she had an infection; they just didn't know what kind or how she got it. That meant more tests as well to try and figure that out.
Dad and I waited in the ER triage room while they did what they needed to do to admit her to the Intermediate Care unit. When everything was taken care of and ready to go, Dad and I followed Mom (in the bed) and the nurse to her new room. Walking down the hall one of the nurses came up to Mom and asked her why she was back. Mom shrugged her shoulders and said I don't know. She laughed and followed Mom's bed into the room. Once in the room, Mom was joined by a few other nurses to get things set up and logged into the computer. They had to run new IV lines which was a nightmare. It took 3 nurses and 6 pokes to get 2 IV lines placed. While they were doing that Mom's blood pressure was all over the place. They tilted the bed to see if that would help, but nothing was helping. It got as low as 62/43 and the head nurse walked out of the room to make a phone call. When she came back in, she told the other nurses in the room that she was being moved to the ICU. I heard ICU and freaked out.
The head nurse went out in the hall to talk to Dad while the rest of them packed everything back up so they could take Mom to the ICU. We again followed Mom and a nurse to the ICU and approaching the hallway, they told us we needed to wait in the waiting room while they got her situated. It took them an hour to get her hooked up and situated. They finally came out to get us and we followed the nurse to her yet again, new room. We got the rundown from the nurse to what was going on and what they were doing for Mom. They had her on antibiotics, fluids, and medication to help with everything that was going on. We waited for the Doctor to come in and talk with Dad, but since it was late and after hours, the doctor told the nurses to just watch for now. They came back in a little while later and said since she had stabilized, he wasn't worried about her current state and would be in in the morning. The nurse then told us that they had shift changes between 4 and 7 and visitors weren't allowed in the rooms at that time. It was nearing 3 o'clock (thanks to daylight savings time) Dad asked if she was stable enough for us to leave for the night. The nurse assured him that she was, so Dad told them we'd be back in the morning, and we headed home.
Sunday, March 12th
Dad planned on sleeping in as long as he could (he had the night shift tonight and needed his sleep) before going up to see Mom. Jenny went up to the hospital to sit with Mom and I went to church with Jeff and Tiffany. Jenny kept watch over Mom and kept us posted on how she was doing. Her first message said that Mom had had a quiet night. She was still asleep. Talked to her a little, she is very drowsy. Very little urine output, which is concerning. On oxygen. Blood pressure is under control and heart rate is good. They have her on meds to regulate those and can't leave the ICU until she can regulate these on her own. The white blood count is a high indication of a possible infection, Sugar level is good, Hemoglobin is 7.2 but said it could be diluted from the IV fluid, Creatine is 2.73, and GFR is 19.
A little while later she said the nurse was going to have the speech therapist come in. Mom wanted a drink but had a hard time drinking and was very confused. She asked her several questions. She nailed where she was at and who I was, but had no idea why she was here, what month or year it was. Thinking was too hard and then she practically fell asleep talking to the nurse. The nurse said she shouldn't be this drowsy and would address it with her doctor.
At one point she was really worried because Mom was hallucinating and kept trying to eat her blanket. We got her to eat some pudding, but she was so weak she could barely hold up the spoon. She's being very difficult for the nurse. The nurse had to be pushy to get her to drink some water (after she had asked for it the first time). Other than that, she slept pretty much the whole time only looking at Jenny in random spurts. At 1 Jenny said she had just talked to the Doctor, and he is doing an overview and will be getting into her charts. She did a little better answering the questions but was still very groggy. Her body was still in shock from being so sick. Going to increase the fluids. We can't give her anything to drink (the nurse has to) because she is too groggy and can choke and aspirate. Trying to get her to increase her urine output with more IV fluid. Keeping the vitals stable with the special meds, which is why she is in the special ICU. They are also giving antibiotics to treat all sorts of infections because the white blood count is so high.
At 4 just before Dad and Jenny left, the nurses started giving her 2 types of antibiotics. Confirmed bacteria in her blood. Still trying to figure out what. After the final rundown, Jenny and Dad went home, and I went with Jeff and Tiffany to their family dinner (with Tiffany's family). We planned out the next few days on who was going to go up and when. I told them I would be up there every day in the morning until shift change. Jenny said she would join me midway through the day and Dad would check in on her in the morning after getting off work. Now that that was decided I was able to relax and have some fun while hanging out with the Wright Clan.
Monday, March 13th
Slept the majority of the time while I was there. The nurses came in a few times and asked her questions, but she was still groggy and wasn't really answering them. They still don't know why she's acting this way. They did have me bring up her hearing aids to see if that would help, maybe she couldn't hear them. The nurses are concerned, like we are, about her mental state. They said the infection is getting better, and her white blood count has come down to prove that. Whether or not once the infection is gone and her toxin levels normalize that she'll go back to normal, they don't know. It's hard to hear that, but at this point, it's one day at a time.
I was asked to go to the waiting room while they came in and gave Mom her sponge bath. After coming back to her room, she still seemed so out of it, but when they asked her her name, she could at least answer that. She couldn't say where she was at or what year it was. She was able to drink a little bit of water as well as some protein juice, which was good. They still don't dare to give her whole foods for fear she would choke on it. Nor are they leaving the water cup within arm's length. They still plan on sending in the speech therapist to check on her swallowing to see what the issue is. She didn't pass the speech therapist's swallow test the first time and wanted to try again. Sadly, she didn't pass again so she can only have ice chips for now. They weren't sure if she couldn't drink the required amount of water or if she didn't understand what was being asked of her. Either way, she didn't pass. They will do the test again tomorrow.
They had an ultrasound tech come in to do an ultrasound on and around her heart. They wanted to check and make sure that the infection didn't cause any growth in the heart that had to be taken care of. Mom wasn't an easy patient. She moaned and whined a lot. Mom also tried to move her arm to a more comfortable position and the tech had to put it back where mom didn't want it. Since she was having such a hard time in one spot, she had to put some kind of dye in her IV to help with the picture. It didn't help with mom moaning and whining, but it did help get better pictures. When she was done, I asked her how it looked and all she said was that she couldn't say anything because she was on the tech, and we had to wait to hear from the doctor.
After the ultrasound, she was so tired that I took that as a good time to take a lunch break. I made sure she was okay with that, and she of course said she was fine. She even told me that I didn't have to worry about coming back. I laughed and told her that I'd be back in an hour or so. Checked in with the nurse before leaving to make sure I wouldn't miss anything and she said to take my time, there was nothing scheduled for Mom that she knew of. I met up with Melissa at Cafe Zupa's. We chatted while we ate talking about all sorts of things, specifically her cruise that she just got back from. It was a great break and when we were done, I went back to the hospital.
The rest of the afternoon was a quiet one. Jenny joined me a little after 2, but she was still asleep. Even though we were both there, she slept the whole time. Every once in a while, she'd pop her head up to see who was in the room. At the end of visiting hours, we woke her up enough to say goodbye. Her numbers for today were a white blood count of 10.9, Hemoglobin of 7.3, GFR of 22, and Creatine of 2.37.
Tuesday, March 14th
When I got there her nurse had already given her her daily sponge bath and was in the process of taking off her press-on nails. Mom wasn't happy about that, but she couldn't properly clean underneath them, so they had to come off. She also had her hair washed and asked if Jenny would bring her her make-up. She was pretty alert. The most alert I have seen her. The nurse also said that she had also already had the water test from the speech therapist and again she didn't pass, but she did better than she did yesterday. The therapist said that they would send in an order to have an x-ray done on her throat to see if anything was stopping her from continuously drinking. They are still concerned that she stops so often, even after a little water to clear her throat, or sometimes even cough.
Physical therapy came in and worked with her. They got her to stand up, but she thought she was walking to the chair. That wasn't the case, they wanted her to walk to the hallway. The entire time she kept saying that she couldn't. The therapist reminded her that she was right there with her and that she didn't need to worry. She could have the chair once she had walked to the hallway. Jenny stood out in the hallway to show her how far she needed to go. Every step she'd stop and say she couldn't take another. Finally, after much pushing and prodding, she made it to the hallway and the second nurse came up behind Mom with the chair so she could sit down. Once she was in the chair, they took her back into her room, got her situated, and told her that she had to sit there for at least an hour. She was not happy about that. While in her chair, since she had nothing else to do, she asked for her make-up (although she had a hard time putting it on, mentally and physically).
By this time, we were hoping that the Doctor would have come to make his rounds. We had been waiting all morning. Jenny couldn't wait any longer and told me not to forget to ask each question we had come up with. At that point, she said goodbye to Mom and said she'd be back later. Now that it was just Mom and I, she was asking every ten minutes if her time was up. I felt bad for disappointing her each time. She eventually gave up and ended up falling asleep in the chair. After 90 minutes, they finally came back and helped her to her bed. When she was comfortable, she went back to sleep.
A little while later, a male nurse came in and told me that they were moving her. I was confused but they said since she had been off the blood pressure meds for more than 24 hours and was normalizing nicely, she could be moved. She didn't need as much care as some of the other patients. It still didn't make sense to me since we had so many unanswered questions. He told me that the Intermediate Care doctor would look over her chart and talk to us once she was in her new room. I then asked him some of the questions that we had, but he didn't know and said the Doctor could once he reviewed her charts. I also asked him questions regarding yesterday's ultrasound. He looked at the notes, but couldn't officially say what it all meant, but there wasn't anything in the notes that raised concerns and wasn't a normal reaction to her sepsis. That's why we haven't heard from the doctor yet, no news is good news.
After he was done checking her charts, he said he'd be back to pick her up. She slept until he came back and when he did, she was not sure about what was going on. She didn't want to move and didn't understand why she was being moved. The nurse assured her that this was a good thing, he said it was lover critical care was required and improved the person's condition. She was okay with that answer, so they got her prepped, moved to her new bed, and then we walked to her new room in the Intermediate Care hallway. We weren't far from the room she was given on Saturday night. Hopefully, she will continue to get better and not go backward.
Once in her new room, they set up her monitors and IVs and she was good to go. I sat with her until we were surprised by a visit from Miranda. Nana lit up. They talked for a little bit and then Jenny spoke up. She asked if the doctor had come by yet and I told her no. She was very upset, and I just smiled and let her play "Karen." The whole reason I stayed today and didn't go anywhere was to meet up with the Doctor to ask our questions. He didn't make it to Mom's room because of an emergency, but we were told that her new doctor in IMC would come by once she was settled. He never did. When Jenny got there, she went out to the nurse's desk to ask why. He had gone home for the day, but the nurse said she would call to see if there was anything he could do.
After a few minutes, she came in and gave Jenny a phone number so that she could call it to talk to the doctor. She went out to the hallway and made the call. While she was in the hallway, Miranda and I visited with Mom. Mom was telling her all about her and Papa's love story and giving Miranda some marriage advice. They also started talking about wedding plans since she and Cole would be getting married soon. I was impressed at how well she was talking and her cognition of past events. It was nice to see more of Mom the way we know her.
When Jenny came back into the room, she said she got all the answers to the questions we had. Some of them couldn't really be affirmative answers, but those were better than nothing. He also said that more tests would have to be done to get more affinitive answers. I guess that would have to be done for now until those tests are done. Hearing that and knowing that Dad would be up soon, it was time to head home. Dad had called into work (didn't go in because of his back), so I told Mom that he was on his way up and that I'd be back tomorrow. Her numbers today were a white blood count of 11.6, Hemoglobin of 7.2, GFR of 27, and Creatine of 2.03.
Wednesday, March 15th
Dad was home waiting for the bathroom guys could come and turn the bathtub into a shower. I told him that I would go up since he couldn't. I didn't get up to the hospital as early as I had the previous 2 days, but as soon as I was ready, I headed in that direction. When I got there Mom's door was closed, and nurses were going in and out. I went and talked to the male nurse that she had yesterday, and he told me that they were helping her go to the bathroom and should be done soon. While I waited, I asked him how her night went (if there was anything worth noting) and her numbers for the day. He said that she did her throat test again this morning and tried really really hard, but still didn't pass. That meant ice chips only. They were still waiting for Radiology to clear up so they could get her in for that x-ray. They also had started her on a blood transfusion. Her bloodwork showed a drop in her hemoglobin again enough to merit another transfusion. They had no idea why her hemoglobin was dropping again, so when she went to the bathroom this morning, they sent her stool to be tested.
Her current bloodwork numbers were a white blood cell count of 9.7, Hemoglobin of 6.8, GFR of 33, and Creatine of 1.71.
When she was done with the transfusion an Infectionist Doctor came in to chat with her. He asked her some questions regarding her care and why she was there. She could answer some but looked at me for more answers. When he got a more complete story of the last 3 weeks, he said he wanted to change a few things in her care. He wanted to stop the broad-spectrum antibiotics and do a more local one. He wanted to make sure that being on broad-spectrum antibiotics didn't destroy the good bacteria. He talked a little bit about the importance of a more localized antibiotic, but he talked so fast, and he had an accent, that it made it hard to understand. He also said they were giving her a different set of IV fluids. This one was called D5 and would help with her sugars to keep them in check (not too low or too high).
Everything seemed like it was moving in the right direction. I sat back down, and Mom fell asleep. A little while later her nurse came in and said they were moving her again (another downgrade in required care). I was in shock; she hadn't even been in the room for a full 24 hours. Again, they said it was a good thing, she didn't need as much care as other patients and was being moved to the medical hallway. I smiled although the thought in my mind that it would have been easier just to keep her in the same room instead of moving her so many times. I don't understand it. I packed up her things and waited for the nurse to come and get Mom.
When it was time, they thankfully didn't have to make her change beds, and we made our way to her new room (literally one room away from the room we checked her out of on Tuesday). After they got her to her new room the nurses weren't sure who was in charge of Mom, but that seemed promising. We waited for them to come in and finish getting her set up. When no one came in and after noticing they hadn't redone her catheter, I went to the nurse's desk to ask. They seemed surprised that they hadn't finished getting her set up and would be in in a minute. I went back to the room and waited. 20 minutes later passed and no one had come by. Mom then asked if her catheter was in, and I told her no. She had a very upset look on her face. She obviously now needed to be cleaned up, so I went out to the nurse's desk again and told them that she now had to be cleaned up. They didn't like that and finally came and did something about it. I felt so bad for mom.
Now that she was cleaned up and finally settled into the room, they started her on the new antibiotic. The nurse also said that they had found some blood in her stool sample and that they would have to do either an endoscopy or a colonoscopy to find the source of the bleeding. Mom didn't like the sound of that but said that she had had one before and it was probably time for one anyway. That made the nurse laugh. I asked her how that would all play out and they said that they would probably put in an NG tube to administer the medications needed to prep for a colonoscopy. That didn't sound fun at all, but they needed to find the source and Mom would just have to be okay with it. This might be the reason why her hemoglobin numbers keep falling and if this is the way to find out, then it has to be done. The procedure will be scheduled sometime tomorrow morning.
The rest of the afternoon was uneventful. We watched some cooking shows until Jenny came up to visit. She joined up for the cooking show and we were soon joined by Dad. Mom had been asking for him all day and the look on her face when Dad walked in was pure joy. I took that as my time to leave. I passed on the important information and then said goodnight.
I left and met Christy at Maple Express for dinner. We ate and visited at the restaurant. When we were done, we decided to go and get some ice cream from Jake's. While eating our ice cream, Jenny called. She was telling me about the NG tube and how well mom took it, and it wasn't good. The tube was larger than any of us had ever seen, and it looked uncomfortable. I was surprised when Jenny said they didn't give her anything (like numbing cream or spray) in preparation for it either and the nurse they had doing it didn't seem like he had done very many in his nursing career. I wanted to cry the whole time she was telling me. I felt so bad that this was happening and that nothing was helping to get any answers. After I got off the phone with Jenny, it was it was time to part ways. I apologized that the phone call had taken up some of our time, but she said it was no big deal, family comes first. She went home and I went to Walmart to pick up vacuum-saver luggage bags hoping that I would be able to fit my coat in my suitcase instead of carrying it. When I got home, I started to pack the items that I no longer needed and then went to bed.
Thursday, March 16th
Jenny sent a message this morning, she had stopped by before going into work. She said that mom had pulled out her NG tube sometime during the night, so they weren't able to give her the meds to do the colonoscopy. She asked her if she had had the colonoscopy and she said she thought she had. She asked her if she pulled out the NG tube and she said she couldn't remember. Since she pulled it out not only could she not have the colonoscopy done this morning, but she also caused fluids to spill into her lungs. She said they are doing some Lasik's to help get the fluid out. Since they couldn't do the colonoscopy, they would still go ahead with the endoscope. He was more worried about the upper GI than the lower. They may have to replace the NG tube and do the colonoscopy depending on the results. Her numbers this morning: Hemoglobin 9.3, not sure of white blood count, GFR 39, and Creatine 1.5.
After reading about Mom, I had to pack my bag and get ready to go home, which meant doing laundry. After each load, I packed a little each time. I tried out the vacuum-sealed bags in hopes that it would do the trick. It didn't matter how I packed the bags, they didn't shrink down enough to fit my coat, not only did they not fit, but the last of the three bags would actually keep the air out, and I gave up. I packed my bag the same way I had on the way here and planned to take bag the vacuum bags since they didn't work and had a defect. When I was done packing my bag, I made the bed with clean sheets, vacuumed the bedroom, and was ready to head out. I grabbed some lunch on the way at Burger Bar and when I was done, went inside to see how Mom was doing.
She seemed fine, but to no surprise, she was asleep again. When she woke up, she asked when the endoscope was supposed to be, so I asked Jenny. She said she didn't know which mom was not happy about. She said she wanted a "dang drink." I didn't know what to tell mom. I went out to the nurse's desk to find out if she could have ice chips and they happily reported that she could. They went and got some ice chips, and I gave a few to Mom to subside her while she waited for the endoscope or the x-ray, whichever was supposed to happen first.
We started flipping through the channels and didn't find much. She wasn't happy with the channel choice, but there wasn't much I could do about that. We stopped on the cooking channel again and she seemed okay with that. After an episode, the anesthesiologist was there to pick her up. She was finally having something done that they said they were going to do. The turnaround in this hospital is ridiculously slow. He was there to get her for her scope. I asked about the colonoscopy, and he said for now it was just the scope, and another NG tube would not be needed. They took her and I stayed in the room until she got back.
They brought her back about 45 minutes later. The doctor came in and asked me if she had had gastro bypass surgery in the past. I told them that I didn't know. He said that he had seen things on the scope that he couldn't explain, nor had he seen in his entire career. He also said that he wanted to do another scope/x-ray this time with a dye that showed what happens when she swallows food or water. He then asked if she had had the swallow test and I told them that she had failed it 3 times already, but still had the x-ray on the "things to do list." He said they would try to do both at the same time, if not she would still need to have both done to get a better idea of what was going on with her GI and stomach.
He then showed me the pictures from her scope. He explained what he was talking about when he said it was nothing like he had ever seen before. It still didn't make much sense to me, but as I was asking for clarification, Dad walked in. I was happy for the save. The doctors then turned around and talked to Dad. He had the right answers to the questions that I didn't know. Apparently, she had had a bypass surgery back in 1987, but the doctors had no idea exactly what had happened during that surgery. From the scope, it looked like they had actually removed part of her stomach instead of bypassing it. Her stomach was also above her diaphragm, that was the part that he had never seen before.
After talking to the medical doctor and the doctor who did the scope, they both said that this whole issue with her stomach may be the cause of a lot of her symptoms. He wanted to send the scope results to a doctor at St. Mark's Hospital since they were the only ones (on Dad's insurance-approved provider list) that did any type of gastro fix. They both said that it would eventually need to be fixed but could wait for now, at least until they hear back from St. Marks. After talking to the doctors, it seemed like we had more questions than answers, but for now, we had to let it slide. We went back into the room but left shortly after since she was having an ultrasound done. While they took care of Mom, Dad and I went downstairs to the cafeteria. We talked about what the doctors had said and what that meant for Mom. It truly meant one thing for sure...we have no idea when Mom is coming home.
We went back to her room and were happy to see some friendly faces. We ran into the Mitchells. It was good to see and visit with them after so many years. After talking to them we went back to Mom's room to see how she was. She was asleep. She didn't sleep for long, and Dad told her what the doctors had said. She seemed like she understood, but I'm not sure she did. After a little bit, we were joined by both Jeff and Jenny. Shortly after Mom said she had to go to the bathroom, so we went and got her a nurse and then we walked down to the waiting room. We talked about the results from her scope and what needed to happen. It was a lot to take in.
When they were done, we went back to Mom's room. We talked with her, and she seemed pretty good. She didn't seem as confused. Cognitively she was doing really well today. Better than any day so far. After some time, it was time for us to leave. I said goodbye to Mom and made her promise me that she would do everything she was supposed to because she didn't belong in a hospital anymore. She of course said that she would, I just hope she meant it. I then said goodbye to Dad. I started to cry. It was hard to say goodbye knowing I didn't do everything I came to do. I was supposed to help with Mom at home so the others could take a deep breath. It was heartbreaking that it didn't turn out the way we all hoped, I'm just crossing my fingers that it will all be over soon, and she will be able to come home.
I went back to Mom and Dad's to pick up my bag and drop off their car. Then Jenny took me to her house. We were having sort of a sleepover since my flight left bright and early and she was my ride. We had some dinner waiting for us when we got home and while we ate, we talked about Mom and all that we had learned today. It was a long day, and I was done with it. I couldn't wait to go to sleep. I went and got ready for bed. Before I knew it, I had fallen asleep.
Saturday, March 18th
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