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I don't have the time or the heart for eloquence today. My mother took a turn for the worse overnight. She has likely suffered either a brain stem bleed or a new stroke. We are waiting for an MRI to confirm. Ultimately, it is not good news and the prognosis is poor. She is on oxygen and is no longer responsive. We were told to rush to the hospital today, and we suspect time is running short. My heart is breaking...I do not wish my mother to suffer another moment, but I don't want to have to learn to live in a world without her.
The last 24 hours have been a challenge. Around 4:00 am, Mom sort of "woke up" for a bit...she was agitated, wanted something, and could not speak. It dawned on us that she can spell...so we cycled through the alphabet and she nodded at the letters to spell what she wanted to say. I have to say, I thought she was trying to communicate something monumental...that she loved us, that she didn't want the treatments to continue...something. Turns out, she spelled "H-O-T." Dad, Jeremy and I actually laughed when we realized what she was saying. We did our best to help cool her down, and she went back to resting.
Since Mom was looking stable and alert, and since we were told she would not get a room until the next afternoon, we decided to work out "shifts" so we could get some rest. Dad wanted to stay, and I desperately needed to get home and pump because I was so uncomfortable, so Jeremy and I left around 5:00 am.
We woke up around 8:15, and I think it took us another hour to get out the door (the phone was ringing, we had the kids here, I had to gather a few things). Jeremy and I were back at the hospital by 9:30, Elliot joined us, and Mom was still in the ER. She was very sleepy, and not as interactive as when we left at 5:00 am.
Mom was trying to communicate again...this time, she wanted a pen. We tried giving her one to write, but she was not yet able to hold a pen and write (since it is her right side affected). She was clearly frustrated. She finally was able to tell me that she had a headache and was nauseated, and it dawned on me that she had not yet had any of her steroids since 11:00 the prior evening. I also realized she had missed her morning dosage of her anti-seizure medication. I went out to talk to her nurse...and she said "oh, those medications were written up for oral administration, and since she can't swallow I didn't give them to her."
Naturally, I went ballistic. I was infuriated that they would withhold medication from a woman with brain cancer, especially, the medication that was keeping her safe and pain-free. They initially ignored me, but I was quite insistent...and eventually had the nurse manager, a patient advocate and a few others scurrying around to correct the problem. I made it quite clear that this was a huge error that was tantamount to negligence, and that they were causing HARM. My mother keeps saying that the medical oath includes the phrase "First do no harm" and yet all of these medical professionals continually seem to do harm by ignoring and being careless.
Once they gave Mom her meds, I felt much better. Somewhere in the middle of the hoopla, Elliot took Dad home to rest, and Jeremy and I stayed with Mom. One of the fellows from the stroke team came by...and he was terrible. He barely spoke two words of English, and he was unable to answer any of our questions. Luckily, I have a friend who is a neurologist, and Elliot faxed her Mom's MRI scan, and she called back with more specific information.
As we have learned, Mom's stroke was relatively small, but it is in an area of the brain called the pontine region. The pontine region is sort of the "traffic cop" for the movement on the right side, and for the facial/throat muscles that are needed for speaking and swallowing. The language center is unaffected, so right now Mom can understand, she knows what she wants to say, but she is unable to make her muscles cooperate to allow her to speak. In patients without brain cancer, these types of strokes are usually highly responsive to rehab. Unfortunately, because of all my mother has been through, we just cannot predict how she will respond.
Ironically, the "best" news of the MRI was my mother's tumor. It really has shrunk significantly and the swelling has dramatically decreased. The midline shift has greatly reduced, and the ventricle had re-inflated. This is much more than we were told to expect only one month post surgery and radiation, so from a cancer perspective, Mom is in good shape right now.
She will need speech, physical therapy and occupational therapy, but the most important component will likely be speech. We need to teach her how to re-route the control function, and then she should be able to speak and swallow again. We will know in another day or two how quickly she is recovering. She will need to do several swallow tests over the next few days, and they may need to start giving her some nutrition through a feeding tube. That is definitely a touchy situation...we really hate the idea of a feeding tube, but our expectation right now is that the tube is just a temporary solution until we can get Mom swallowing again on her own. It may be possible to avoid the tube altogether if Mom can pass her swallow test.
It was after 1:00 pm before we finally had a room. Jeremy and I had complained about the earlier visit from the stroke fellow, and the stroke nurse coordinator was there to meet with us. She was lovely, and we requested that we see a different doctor with better patient communication skills, and she told us the doctor would be by in the afternoon.
As Mom was transferred to her room, Jen arrived. She had dropped the girls off at our house to play with Micah while she came for a visit. She was there for a few hours before heading home (and unfortunately got caught in terrible rush hour traffic). Mom is actually in a great room, and her nurses are quite kind. After we got our room, the visitors started to arrive...Gail, then Suellen, then Sheila. Mom was aware that everyone was there, but she was very sleepy. She was still communicating that she was uncomfortable, and we tried over and over again to adjust her position. Her left leg and arm are actually moving quite well - somehow, since she is unable to use the right due to the stroke, she seems to have re-discovered her left side again.
As promised, the neurologist (Dr. Moreno) came by in the afternoon. He did another full background and an examination of Mom, and he was quite kind with her and he took a long time to talk to us. My father had just returned to the hospital, so we were all there. While he was reluctant to promise anything, he did give us better information. He agreed with my friend's assessment that these strokes are usually responsive to rehab, but we just have to see what is happening with my Mom. He talked to us about the treatment plan - they do expect Mom to be in the hospital until next week sometime. He will be sending a speech language pathologist in and the rehab doctor for their evaluations and recommendations, too. Our first goal is to work on the swallowing and try to get her eating again, hopefully on her own. We do not yet know if Mom will go to an acute rehab or a sub-acute rehab - it all depends on how awake she is and able to cooperate with treatment. He even gave us hope that perhaps she could walk with a walker again...especially since she now is able to use her left arm and leg.
After seeing the neurologist, we also got a call from Dr. Holdhoff. He was very sorry to hear about Mom, and he said that he had looked at the scans and the results, and he thought the whole thing was "weird." I gave him my version of the story (again), and he kept asking me if Mom had a drop in blood pressure. According to Dr. Holdhoff, this stroke was not caused by the cancer. It is in a different, unrelated and unconnected region. He also said there is no evidence of a clot or a bleed, and while most doctors presume it was caused by a clot, he thinks that would be unlikely given Mom's low platelet count. He feels that Mom's stroke was caused by a lack of profusion (blood flow) to her brain, and he thinks that Mom either had an allergic reaction to the medication or to the platelets (platelet transfusions can cause reactions, which is why they give benadryl along with the platelets). He thinks that while Mom was having the reaction, Mom's blood pressure dropped dramatically and caused the stroke. He also said it could turn out to be "good news" in that it may be more of an ischemic attack than a true stroke, which would mean that the effects could be more temporary and resolve a bit faster. I guess we'll just have to see how this unfolds.
Sheila drove me home a little after 6, and Jeremy left at the same time. I came home, dealt with dinner and bed for the children...and then I fell asleep on the couch. My father came home around 11, and he went to sleep. My mother is by herself at the hospital. We decided not to get an aide because the care ratio there is good, and frankly, there isn't much an aide can/will do for her. I think Mom would be more frustrated that there is someone there with whom she cannot communicate. I hope they check on her frequently throughout the night, and I hope that she is able to communicate what she needs. We'll all be headed back in the morning, and we'll see how the night went.
We are open to visitors, but please know that this is currently a challenging visit. My mom will know you are there, and you can tell that she hears/understands you. She can hold your hand, squeeze, nod, blink, and look at you. I do not know how alert or sleepy she will be at any given time, and she cannot speak right now. She also is not able to eat yet, and they may be putting in a feeding tube to keep her fed to regain strength and start the road to recovery. It is difficult to see my mother in this condition, so please consider that before coming, and only come if you are certain you can handle it appropriately. We do not want any negativity around my mother during this trying time because she does see and hear what is happening around her.
I will update again as soon as I can. I did read your messages yesterday and some of the blog - Mom is still able to listen, so your words of encouragement will help a lot right now.
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!
