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Surprises...I've never been much for surprises. I like to plan, I like order, and surprises...well, they cause disruption. While some surprises can be beautiful, I always find my surprises rather unwelcome. Today was no different.
Mom had an okay evening last night. She was up talking to me and recording messages for the family until late last night. She woke up around 6:00 this morning. I helped her out, and we chatted a bit. I gave her insulin a little early and gave her a snack and some juice. I went back to bed for a little while. Micah woke up early, and Elliot actually got up with him while I nursed Maya.
At 8:30, Senait showed up to help us out today. Mom was sleepy and did not want to wake up again. We let her sleep until 9, and then woke her up. She ate breakfast in bed and Senait got her bathed and dressed while I helped her with medications. Dad, Mom, Maya, Senait and I were out the door around 10 to go get Mom a platelet transfusion. Senait was very helpful and kind, and she was pleasant to have around.
While we were getting the transfusion, Mom listened to music and I called the doctors to see about getting her antibiotic changed. They ended up calling in a new one for her. Dad left at 1:30 for an eye doctor appointment and we wrapped up around 2.
We were home by 2:45, and Mom met with her speech language pathologist. He said she was doing great, and we worked on a list of goals. After speech, Mom rested a while and then her physical therapist arrived. She noticed increased weakness, but worked with Mom for an hour.
At 6:00, Senait brought Mom out for dinner. Dad arrived home, Elliot left for his volunteer night "everything but the turkey," and we sat down to a meal of leftover chicken and vegetable soup. Mom was eating well (and asking if we had more of Ruby's couscous), and Micah ate nothing.
During dinner, my friend Heather and her dog Bentley arrived. Bentley and Micah were chasing each other and playing. Micah was playing tug, and peals of laughter poured out. My momwas smiling at Bentley and grinning at Micah. At 7:30, Mom went back to her room. Micah and Bentley kept running in to check on her.
Heather and Bentley left around 7:45, and my Dad took Micah downstairs to watch Dancing with the Stars while I nursed Maya and checked on Mom. She was getting sleepy, so I told her I'd be back at 10 with her meds unless she needed me earlier. I tried several times to put Maya in the crib, but no luck. At 8:30, I went in to let Senait go home, and Mom was sleeping. Actually, she ws snoring loudly with her eyes open and it was a little creepy. She wasn't waking up easily and I was worried. When Senait left, I grabbed the baby monitor to listen for Mom.
I tried putting Maya in her crib at 9, and I let her cry until 9:15. Mom was getting restless and she was coughing. I wondered if the baby was bothering her and it looked to me like she needed to sit up and maybe drink some tea or suck on a hard candy. I went and got Maya and asked Mom if she needed anything. She didn't respond, and I thought she couldn't hear me with the headphones and iPod, so I walked over to her. As I got close, it seemed Mom was choking. I dropped the baby on the ground and called for Dad. He came running, took Maya, and I told him to call 911.
As I asked Mom questions, she indicated that she was not choking but couldn't breathe. Her tongue was swollen and her lips were puffy, and I thought she was having an allergic reaction to the antibiotic. I thought about giving her benadryl and then knew she couldn't swallow. Mom was indicating that her throat was closing up. I happen to have an epipen for allergic reactions and I decided to give it to Mom. I ran and got it...but it took me a few tries to get it working. Immediately, Mom started breathing easier and the swelling in her face went down. As she relaxed, we realized she was having issues speaking...and then she couldn't speak at all. The paramedics arrived, and Mom was doing fine. She could smile, she could move her right side, she was alert and responding. They left for Suburban with my father while I waited for Elliot to get home. Elliot was hone a few minutes later and I left for Suburban. We were allowed in back, and Mom had deteriorated. Her right side was not moving and she could not speak. They did a CT scan and MRI. While we were waiting, Suzette and Joel and then my brother arrived. We learned that she had a stroke, and the prognosis is poor.
We are waiting for a bed in the CCU. They cannot administer the stroke protocol, so all we can do is wait. Her congestion is bothering her. She knows what is going on and is responding with her eyes. We will know more tomorrow, but things are rough.
Scattered...my thoughts are scattered, my house is scattered, and I have a feeling this blog post will be a bit scattered. It is 12:30 am, and Maya is once again awake and screaming. We thought we had it figured out...we got her a mobile and she spent the past few hours in her crib calm. She really just resists every approach to good sleeping habits that we've tried. The thing is, she does sleep well...she just doesn't want to sleep alone, and she does not want to go to sleep early. I hope we don't have to worry about what that portends for her teenage years.
Mom had a decent night last night - she woke up once overnight, and then again at 7. I hope that as she becomes more comfortable she is able to sleep through the night again - it would certainly be easier on all of us! At Hopkins, she was sleeping 12 hours a night, but lately she seems to wake up every 3 hours or so.
Today was a better day with the caretaker...Anna was here, and she did a fine job. She showed up 30 minutes early, and she had lots of down time today (including a 2 hour nap), but she did do my mother's laundry today. If we need to use the service again, she would be fine. Mom was quite sleepy again this morning, and she has had a headache on and off all day. I got out for some quiet time with Micah at swim class while Dad babysat Maya and Elliot volunteered at Martha's Table cooking 1100 meals for the homeless. I wasn't able to join him this year...it was just too difficult with everything going on in our lives right now.
When I got back from swim class, I made lunch for Micah and Mom. After lunch, Micah took a nap and we had a parade of visitors all afternoon...Gail, Gonzalo, Sheila and Les, so it was a fun day for my mother. Once again, we had plenty to eat for dinner, thanks to our visitors. Gonzalo brought over a delicious Peruvian dish made with potatoes and beets that we ate for our appetizer, and Sheila made more vegetable soup that we ate for our main course.
Our plan tomorrow is to go to Suburban for Mom's platelet transfusion. We did finally get the results of her bloodwork from yesterday - her platelets had dropped all the way down to 18,000 but her white blood cell count was up a bit. She was running a fever again today, so I'm concerned that her antibiotics may not be working. We'll see what they say tomorrow.
Mom has been having a rough night. She was exhausted and went back to her room for bed around 7:15. She has yet to fall asleep at 12:45. She has been tossing and turning and coughing all night. She has been anxious and worked up about some things, and she is also worried about her appointments this week. Tonight, she wanted to do a few more video messages, so it was a tough night for me, too, as I sat there crying while filming her. I just hate to think about all of this, but I know how important these videos will be for us one day. I hope that Mom is able to sleep tonight, and I hope that she starts feeling better.
I'm starting to feel like Murphy Brown. For those of you who never watched the show, there was an ongoing joke about Murphy Brown and her secretary. Almost every week, Murphy would have a new secretary...and she kept firing them. They were all incompetent, and it was with good cause, but after a while, her secretaries just became numbers...6, 13, 42....
As you can probably guess, our luck with caretakers has been...well, horrible. All I want is someone competent, willing to do transfers, who is flexible, and doesn't have a problem with children. Sounds simple, right? Apparently not.
The past few days, competence has been the big issue. I can't even remember how many I've fired so far. A few I just requested not return (at least 2 of them), but today I actually had to fire another one. Krystal - if you are reading this, we are counting down the hours until we see you on Tuesday!
Perhaps I'll just back up again and start from the beginning. Last night, Maya was a disaster. We just could not get her to go to sleep in her crib. I ended up taking her to bed with me at 2:00 am...she only wants to sleep snuggled close to me. My Mom was up on and off a few times last night. I went in around 1:00, 4:00 and 7:00. I really did not manage to get much sleep.
Our caretaker, Mariama, arrived at 9:00 this morning (1/2 hr late) - the same one we had yesterday. Once again, she decided to start her work day with her "breakfast" break. I have to say, I've always believed that if work starts at 8:30, it implies that you eat breakfast PRIOR to arriving, not after you get there.
My mother was sleepy this morning...we had to rouse her from bed at 9:15, and Mariama got Mom bathed. I transferred Mom to her wheelchair, and we brought her out for breakfast. I made Mom breakfast, and she decided to go back to bed after eating. I moved Mom back to the bedroom, and she napped for a while.
I have to say, I've been a bit unclear as to what Mariama actually does. She does not transfer Mom to/from her wheelchair. She did help bathe Mom, but she doesn't seem to sit with Mom while she eats, and she doesn't organize Mom's things, or change her sheets, or any of the other things I expect. She does not stay in the living room with us when Mom is out of her room, and she does not seem to do anything while Mom is napping. She did continually come and ask to hold Maya...and while I appreciate the gesture, I needed her to focus on my mother, not the baby.
Elliot took Micah to services, and Maya stayed behind with me. My father was out running errands while I took care of things at home. Around 11, a nurse from Potomac Home Health Care arrived to draw blood from Mom and "resume" her therapy treatment plan. This was a male nurse...who must have smoked about 3 packs of cigarettes before walking in the door. I could see a puff of smoke around him, and the stench was so awful that it had both me and Maya coughing and sneezing. Mom and I were making faces and mouthing words to each other about the stench behind his back, and every time he turned, I squirted more of the biological odor eliminator in the room! It was an adventure, and I couldn't wait until he left.
At 12:00, I made lunch. Mom wanted pizza, so I made pizza. I guess some of the cheese must have dropped onto the bottom burner, and suddenly the house was filled with smoke. Luckily, only one small piece of cheese burned, and the pizza was perfect. As I was airing out the house, my friends Laurie and Jeff dropped by...with a delicious bread from the Spring Mill bread company. They only stayed a little while, but Maya was in love with Jeff - she batted her eyes at him and gave him great big grins while I ran around the house.
Mom enjoyed lunch, and seemed to be in good spirits. Jeremy had called to tell us he was on his way over to visit. After lunch, I moved Mom to the couch. She rested comfortably there until Jeremy arrived. She sat and chatted with him for a few hours, and then my father came home. Jeremy and Dad left to go back out and pick up a few things we needed, while Mom, Micah, Elliot, Maya and I napped. As far as I could tell, Mariama was napping in Mom's bedroom from about 12:00 until 4:00. At 4:00, Mom woke up and needed to go back to her room. I asked Mariama to help me with Mom, and she informed me she was on a lunch break. I then said to her that Mom needed help now, that she had been on a break for the past 4 hours, and that I needed her to help. She actually got quite rude...she insisted that I owed her a lunch break and it was wrong of me to interrupt her. At that point, I got pissed. I told her she had just had a 4 hour break, and she should have eaten her lunch then. Her response? "I wasn't hungry then, and I can't eat when I'm not hungry. Now I'm hungry and you owe me a break." At this point, I was incredibly unhappy. She started bitching about how wrong I was for ruining her lunch, and I asked her to just stop yelling and disturbing my mother. She then talked back to me...she told me to stop talking. I was furious...I couldn't believe her behavior. I moved my mother to her chair, brought her back to the bedroom, and asked Mariama to assist her. I was listening over the monitor, and Mariama was slamming things around and bitching about her lunch break. I walked back into the room, asked her to please stop the yelling and just do her job, and she again told me to stop talking. I left the room in tears, and my father asked her to stop yelling, too. He then called Potomac Home Health and informed them that we wanted to release Mariama. I spoke to the manager, explained the story, and we told Mariama to go. She spent the next 35 minutes "packing up" and yelling. She then tried to add the extra time to her time sheet.
In the midst of all of this, another home health aide arrived for an interview. All I could think was "great...they are here as I'm firing someone, I'm sure they'll never want to work for us." It was a man named Demisse who arrived, with his friend Senait. Demisse was one of the caretakers for my cousin, Murray, and Francine had told me to call him. My mother has not wanted a male caretaker, so Demisse brought along a female friend to help out. We sat and talked, they saw the situation, and they actually jumped in and helped out with my mother! Demisse was wonderful - incredibly kind and clearly experienced. I can tell that Murray was lucky to work with him.
Senait was quite kind. She seems willing to work and flexible. It was hard to tell much more from our short interaction, but she was sweet with my mother, and seemed to understand what I wanted. Demisse seemed to be helping her some, so it is hard to tell if she is as skilled. I have to say, I was in tears for most of the interview, and they were just so supportive and friendly. She agreed to come work with us on Monday and Thursday this week, and she said she is available to work every Friday through Monday. I'm going to test her out this week and see where we stand, and I promised next Monday to Edna.
Demisse stayed a bit later to help out more, and neither one of them would let us pay them for their time today. Demisse also said that he would be happy to work some nights and weekends now and again (especially on days when I go out of town, or even out for the evening). So, thank you, Francine, for Demisse's phone number. You were right...he is a wonderful man and he was a huge help today. I am hopeful that things will work out with Senait. If not, there are still 2 other caretakers we've interviewed that are possibilities.
After all of this nonsense, we were left without a caretaker for the evening, but it felt like one of those days that would just be easier to finish on my own. Elliot went out to dinner with a friend to discuss a business opportunity, and Dad and I ate dinner with Mom and the kids. Mom wanted hot dogs, so it was a gourmet meal. After dinner, Mom sat in the living room with the kids for an hour, and Dad worked on the dishes. I got Micah ready for bed, and Dad and I did the double team thing to put Micah to sleep. Dad took over with Maya while I helped Mom get into bed. I was with Mom for about 30 minutes, and then I spent the next hour trying to put Maya to sleep. That child falls asleep, but every time she realized she was alone in her crib, she started to scream again!
At 10:00 pm, I was with Mom to give her pills and help her get ready for bed. Mom also wanted to record some messages for the family. So, we took some time for her to talk. I was in tears, of course. Poor Dad...Maya screamed for the better part of 1 1/2 hours in his arms! He did a great job keeping her busy, but it was a rough job. Elliot got home around 11:45, and Dad went to bed around 12:15 or so. It is now 1:00 am, and Maya still won't let us put her in the crib.
Tomorrow, we have Anna, the caretaker who worked with Mom her last night at the hospital and our first night with her back home from Suburban last week. She seemed nice enough, so I'm hopeful that tomorrow will go smoothly. I somehow need to figure out how to get Micah to swim class in the morning. I don't think we have anything else planned for the day, and frankly, I just don't think I'm up for it. I hope that we have some visitors...Mom looks forward to having company.
Two more days until we have a Krystal day! Right now, I spend all week looking forward to our Krystal days. Krystal days are wonderful...things run smoothly, we have a routine, Mom is always safe and cared for, my mother's room is organized, my mom is relaxed and so am I. Krystal days come with a lot of smiles and a sense of calm. It makes me wish every day was a Krystal day. As I enjoy my Murphy Brown tour of the nursing service system, I am appreciating more and more how lucky we are to have Krystal, and that I get to have some Krystal days.
I'm going to try and get some sleep before my mother wakes up again. I think my current plan is to take the baby into bed with me - I just cannot do another minute of crying tonight. Micah already woke up once, too, so I've hit my limit for the night. I'm hoping that tomorrow will start off a new week filled with good news for which I can truly be thankful!
Chaos...it seems to rule my life these days. Half the time, I do not even know if I am coming or going. My memory has always been one of my most valuable traits...I have a nearly photographic memory. I can remember entire pages of text, I can repeat conversations word for word, and I can remember phone numbers and locker combinations from 30 years ago.
Lately, however, I am getting distracted. I make appointments on the phone, and by the time I get to my computer to write them down, I forget what I am doing. I walk around all day knowing that I have forgotten appointments, but unable to remember what or when. Sometimes, I am momentarily surprised when people or appointments show up, then I become embarrassed that I forgot to pay attention.
Today was one of those days. We got up this morning, and at 8:30 our home health aide arrived. She immediately indicated to me that she was not comfortable doing transfers, so I could tell it was going to be a long day. We had hoped that it would be a quiet day at home...but we ended up needing to go to Dr. Boccia's office (the hematologist) so that Mom could get a shot of Neulasta (a 2-week shot that helps raise her white blood count). We got Mom up, fed, dressed and ready, but it was about 10:15 or so before we made it out the door. On our way to the office, we received a call from Mom's home health nurse, saying she was on her way to draw Mom's blood. Mistake number one...I had forgotten she was coming. To be exact, she never gave me a specific time, so I kind of didn't bother to pay attention to the appointment. I knew she usually came in the morning, but I just forgot to call her to tell her we needed to go to the doctor instead.
When we arrived at the office, we stopped off briefly at the surgery center to say hello to Bobbie Willens. It was a nice quick visit, and Mom was thrilled to be out and socializing. We then went upstairs to have Mom's shot and get blood drawn for another blood count. The office was moving quite slowly...I think we were waiting for well over an hour (between the time sitting in the waiting area and the time waiting for the blood test results). We had one odd but kind thing happen...an older man came over and gave me a gold dollar coin - he held it out to me and asked if he could give me money for the baby. I was a bit stunned, and initially told him that she could not play with coins. He said he understood, and just wanted to give her money. I thanked him and took the coin...but perhaps I should not have watched all those spy shows on television tonight, since they make me wonder if there is a hidden tracking device or state secrets embedded into the coin.
After keeping us waiting, the nurse came back to tell us that Mom's platelets had dropped down to 28,000. They informed us that Mom will likely need a transfusion on Monday morning. I have to say, I was a little ticked...I wish they had just kept her in the hospital overnight and done the transfusion this morning before releasing her. I don't think that Dr. Vinny (the doctor who has been seeing her in the hospital) really understands my mother's condition, or how hard it is to get her in and out of the house right now. It isn't just the physical transportation...my mother does not have a lot of stamina. Long trips, and time spent in her wheelchair are a huge drain on her. Dr. Vinny seems to make all the choices that make life toughest on my mother.
Initially, they wanted my mother to go to a second lab today to get her blood type and cross test done. While the lab was conveniently located, it was already 12:00 (Mom had not yet eaten lunch, we did not have her insulin on hand because we expected a quick appointment, and she was already saying that she was too exhausted to continue sitting in her chair) and it was too much for Mom to stay out any longer. While the nurse seemed to think I was a raging bitch (she kept telling me that the transfusion was important, as if I didn't care about my Mom's health), I don't think they comprehend how physically taxing some "simple" things like just waiting another 45 minutes for a blood test really are for my mother right now.
I updated the nurse about getting a phlebotomist from the outpatient clinic to come to our house, and asked her to arrange it. I then took Mom home. We were in the door about 5 minutes before Mom was too exhausted to even sit at the table for lunch. Instead, she stretched out on the couch while I fed her lunch.
On our way home, Krystal called! We'd been worried about her since her hospitalization. She is doing well, and is finally starting to feel better. We were so relieved - we were worried that something terrible had happened.
After lunch, we received a call from the hematologist...the lab was unable to come to draw Mom's blood. But, the nurse had worked out a solution and convinced the transfusion center to draw Mom's labs on Monday when she goes for her transfusion. Only one minor hiccup...they wanted us at the center between 8:30 and 9:00. I nearly laughed...it is impossible to get Mom up, fed, dressed, medicated and out the door that early. She barely made it down the stairs in her pajamas to therapy at 9:00 am at Levindale, and that was with an army of staff support! I tried explaining this to the nurse, who again acted like I was crazy and not interested in my mother's health.
Luckily, the transfusion center called me directly...and they understood our situation. In fact, they remembered talking to me a few days ago and seeing my mother, and they said they could be flexible on the time under the circumstances. We were so relieved! In the meantime, I also sent a note to Dr. Holdhoff - perhaps Mom can get a transfusion up at Hopkins on Tuesday when we are there all day for testing anyway.
We had a couple of hours of quiet while Mom rested on the couch. Well, almost quiet - the dishwasher repair man arrived. Actually, we were expecting the dishwasher to be replaced, but for some reason, our landlady sent out another plumber for a third second opinion. I'm not sure we will ever see a new dishwasher!
In the late afternoon, the parade began! First, my friend Niki (mom's dentist) came by to help fix one of Mom's crowns. While Niki was here, Wendy Alvey came by with dinner for us! It was a chicken and vegetable dish with rice and a salad. There was a lot going on (and the phone was ringing off the hook, too), so Mom was not able to give her full attention to either of our guests. After they left, a caretaker showed up for an interview...and I have to admit, I had forgotten that I had asked her to come over. She seemed nice...but I have no idea if she is an appropriate match. We may give her a try one of these days and see how it goes. I'm a bit uncomfortable, though - she works for a well-known service, but I got to her in a random way. The home health nurse recommended someone (who is currently unavailable), and that aide recommended this woman.
After the interview, Mom rested a bit in her room for an hour. When she woke up, dinner was served - and it was delicious. Thank you, Wendy, for your kindness - it was great to see you again today, and we truly appreciated the dinner.
After dinner, Mom was relaxing on the couch. We received a phone call from Jo, one of Mom's co-workers, and I have to admit I did not remember they were planning to come over. Luckily, Mom was up and eager for a visit. They were here for over an hour, and I think it was a lovely visit.
Our home health aide left around 8:30 pm. I have to say, I was not particularly impressed. She did not do any transfers, she forgot to brush my Mom's teeth, and she did not help Mom with anything unless I specifically told her to do it. The one good thing...she did like to hold Maya, and she volunteered to wash all of our dishes, so she did score a few points. She is supposed to be here until Monday, so we'll see how it goes.
Maya has been terrible tonight - she just wants to sleep on one of us. I wish she would just go to sleep. I have a feeling Mom will be up a few more times tonight, but who knows. I hope tomorrow goes smoothly! We have another caretaker coming in for an interview - perhaps one of these days we'll find another person we like as much as Krystal...or at least another person we can trust.
Mom came home tonight! It was a bit of a surprise...we were told she would not be home for at least another day. I guess her doctor changed his mind, because she was released around dinner time. Her white blood cell counts are on the rise, and her platelets are relatively stable. She still has a long way to go to fully recover, but for now, she is home, sleeping and all is well.
It was a typical morning in our house...Maya finally slept through the night after I got her into her crib at midnight last night. Megan arrived at 9, and I took Micah to preschool today. We had a fun day in preschool, playing, making menorahs, and mostly behaving. Micah and I returned home a little after 11, and I traded children with Megan and headed back out the door to take Maya to a class at Kidville. Maya and I met up with our cousins, Jodi and Layla, and we had a great time. After class, we went to a quick lunch, and then Maya and I went to the hospital to visit my mother.
As we were parking the car, Elliot came out! He had popped in to visit Mom, too, on his way back from his meeting. I went inside, but only stayed about 1 1/2 hours. While we were there, the doctor decided to release Mom, so I drove home so that Elliot could come back with the wheelchair van for Mom.
I waited at home with the children...and Micah was being awful. He was whining at everything! He wanted his tricycle in the house and his helmet on so he could ride around inside. I finally just gave in because I was so sick of the whining and crying! He ended up eating an early dinner - mostly blueberries, with a bit of yogurt and noodle kugel.
When Mom came home around 6:30, I gave her dinner. It was one of the strangest meals we've had in a while...noodle kugel, egg rolls, couscous and chocolate ice cream. She stayed out with us for a bit longer, then headed back to the room. We had an aide here to help us for a few hours, but she mostly sat in Mom's room the entire time. She did help get Mom ready for bed while Elliot, Dad and I bathed the children. Micah went down easily, but Maya fought sleeping until 11:00 pm. Mom slept from about 11:00 until 4:30, and she is already back to sleep. We have a new aide scheduled for tomorrow (from a service) so we'll see how that goes.
