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!

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.

Not much new today…Mom is still in the hospital and will be there at least until Friday. Her white blood cell count is not climbing yet, and her platelets dropped a bit today. They will not release her until her levels come up and they see an “upward” trend in her numbers.

Today was a quiet day at home – Micah and Maya slept until 8:30, and Megan arrived at 9. Mom called this morning – she told us that the caretaker we hired dropped her, so we worked on finding an alternate person for tonight. The service was quite concerned, so they arranged for us to have a LNP instead of a CNA for tonight. Megan took Micah to Kidville for his class, and I stayed behind with Maya. I took care of a few odds and ends, and then Maya and I left for the hospital around 11:30.

Mom seemed pretty good today. We spent the day talking and relaxing and sorting through a few more points with the hospital staff. We finally got to the bottom of the incident last night – according to the nurse on duty, Mom slipped and the nursing aide barely had her on the bed, but she never actually dropped her to the floor. Not much comfort, but the good news was Mom was not hurt. I also got some answers about how to get Mom any future transfusions without jumping through all the complicated hoops – it turns out, there is a client services center at the outpatient blood bank, and they will come to the house to do the type and cross blood draw for patients like my mother.

My Dad kept telling a stupid story today…but he kept saying the word “willy” instead of “wedgie.” I told him the next time he got the words mixed up, I’d give him both a wet willy and a wedgie, and then I was pretty sure he would learn the difference!

We did have one semi-serious discussion. My mom is now eligible for another rehab visit after this hospital stay. She has maxed out the benefit from our private insurance, but she now has Medicare Part A, and she is entitled to additional days of rehab through her Medicare plan. I asked Mom if she wanted to just come home from the hospital and continue with the in-home rehab or if she wanted to check back into a nursing home (like the Hebrew Home) for a few weeks to do more intensive rehab. I told her the decision was fully hers – that we would be thrilled to have her back home, and if she wants to try rehab, we would support that, too. She isn’t sure yet what she wants to do, so she’ll spend the next few days mulling it over. I told her that no decision was permanent – if she tries rehab and would rather come home, we can check her out at any time. If she comes home, she has three days to check into an inpatient rehab center. So, we’ll see what she decides. I can see the pros and cons of both…part of me wants to just bring her home and enjoy this time, but the other part of me thinks she could make some more progress, finish up those rehab days that were cut short, and perhaps rebuild her strength if she goes to rehab. She may be able to accomplish those goals with home therapy, too. I am worried that she has become weaker in the hospital, and it may be harder to transfer her and take care of her at home if she is now weaker.

Today, we had a nice change of pace. The cancer wing had a tea hour, and at 2:00 we headed down to drink tea, eat cookies and relax. Suzette and my father showed up while we were at the tea, and we had a lovely afternoon. Dad got some good information from the social worker that he needed, and I got a list of oncology massage therapists that visit the house.

After tea, Mom was tired. I left for the afternoon around 4:30 and headed home. I played with the kids for a few hours and then Elliot sat with them while I prepared dinner. Just as dinner was ready, Elliot decided to run up to Gail and Steven’s to pick up a dining room table.

Dad, Micah and I ate dinner together – noodle kugel and tuna cheese melts. Elliot arrived home in time to put Micah to bed, and Krystal called to give us an “end of the night” update about Mom. Dad and I ran back to the hospital to check on Mom and the new caretaker. Her name is Anna, and she seems perfectly nice – we’ll have to see if Mom feels she is able to help out. We only stayed a short while, but everything seemed fine. If Anna works out, we could try her out at home, too. I have a few other names of caretakers, so I think I’ll be interviewing a lot over the next few weeks.

Maya has been quite uncooperative – it is 12:15 and she is still wide awake. She is definitely my daughter, no question!

Today was an incredibly productive day for me. I actually got to sleep around 1:30 or 2:00 last night, and slept straight through until 6:30 am when my Mom called. I was able to head back to bed and doze on and off until 8:30 when Micah and Maya woke up. I nursed Maya this morning while Elliot got Micah breakfast. Megan arrived at 9:00 and helped Elliot get Micah ready for preschool. Elliot left with Micah for preschool around 9:15, my father left to run his errands, and Megan took over with Maya.

Over the next 2 1/2 hours, I managed to clean the house for the cleaning lady, unpack a few boxes, dig out a few things in the bedroom, take a shower, return a few business calls, cancel my mom’s therapy sessions, do a load of laundry, sort the kids’ clothing, and empty a few boxes in the kitchen and the dining room. We still have some junk laying around in the dining room and the kitchen, but the house is really starting to get organized!

Krystal called to tell us that she had arrived at the hospital with my Mom. Elliot went to visit Mom with Micah after preschool, and I arrived there around 12:30. Dad was already there when I arrived, and Elliot and Micah left shortly thereafter. We had a nice visit with Mom. She was feeling well and looked great. We met with the nurse coordinator to try and get everything with Mom’s medications straightened out. We also asked to speak to her doctor to try and determine when they plan to release her.

We had one funny moment today – the nurse coordinator was asking Mom questions, and I misheard (I thought she was asking how old Mom was and I answered “65” – it was actually a totally inappropriate response). Dad and I laughed…it reminded us of Mom in the emergency room yesterday – the doctor was interviewing the patient in the room next door (so much for patient privacy/HIPAA, right?) and Mom could hear all the questions. He would ask her how old she was, and Mom would answer. The doctor would ask about the woman’s pain, and Mom would answer that she didn’t have any pain. We were laughing, because each time we tried to explain to Mom that he wasn’t talking to her, she kept asking “Well, who else is he talking to?”

I had to call and cancel our massages (again). How disappointing! Mom and I had been looking forward to our massages tonight. As fate would have it, Mom did end up with a bit of a massage. While we were there, an oncology massage therapist came by and offered a hand and foot massage to Mom – it is a service they offer on the oncology floor! So while it wasn’t the massage we had planned for today, it was a nice bit of relaxation for Mom.

At 4:00, we had a visitor…Edna, a possible caretaker for my mother. We sat and chatted with her a bit, and she seems wonderful. She used to work for my mother’s boss for many years taking care of her father, and every time I have spoken to her on the phone, she just has this warm voice that immediately makes me relax. I almost feel like she is giving me a great big hug and handing me milk and cookies! When she walked into the room, she had a huge smile on her face, and immediately came over to see Maya. She clearly adores children. We talked about our needs and our home environment, and she says she would like to try working with us. Her availability may not match up, but we are going to try working with her on Mondays, and perhaps add hours if it works out. My Dad left and drove Edna home (she lives right near my parents’ house).

I stayed with Mom for a while longer, and then I headed out to the Hebrew Home to visit Della. My mom had been hoping to visit her today, but this hospitalization delayed our plans. My mom is hoping to go visit Della next Tuesday if she is out of the hospital by then. I had a lovely visit with Della – she had a big grin on her face when she saw Delicious, and we had a fabulous visit. I called my Mom afterwards, and she was so glad we were able to go see Della.

When I arrived home, I found dinner waiting for us. Our friend Vivian brought over dinner for us – chicken, vegetables, potatoes and brownies. Thanks, Vivian – I’m sorry I missed you! We had a great dinner, and it was so nice to be home in a clean house. My friend Heather came by for a visit around 7:15, and we all hung out together for a few hours. We did sit down and watch Glee – Micah just loves the show! They did a dream sequence with the “Make Them Laugh” routine from Singin’ in the Rain, and Micah was HYSTERICALLY laughing. It was so funny to see him amused by the routine. I’m amazed by how sense of humor develops. I don’t think he understands enough to really appreciate the routine, but yet the playfulness of the routine and the faces and the falling just tickled his funny bone, and he couldn’t stop laughing. My Dad has decided to bring over some of his videos of Broadway routines to sit and watch with Micah – I bet he’ll love it.

Heather stayed and hung out until 9:15 or so, and then she headed home for the night. She got to see the house, but I don’t feel like we really had much time to just chat. Hopefully we’ll catch up more next visit.

Both kids went to bed easily tonight. Maya has woken up 2x tonight, but both times all she needed was her pacifier and she went right back to sleep. I’ve been so amazed by how much Maya has been growing recently. She is sitting and playing with toys, she can take her pacifier and reinsert it herself, and she is just so alert! I love that just a few weeks ago, she first learned to suck a pacifier, and now it is a permanent attachment. Micah, too, is growing up so quickly. His language skills seem to be developing by leaps and bounds. He is often using 2-3 word sentences. I love how he makes up words, too. “Say cheese” for camera, and “Apple poon” (apple on a spoon) for applesauce. He asks for cake every night now, and he bangs on the gate to downstairs yelling “PLAY!” when he wants to go down and play with his toys. He goes in to see “Mimi” all the time, and he is constantly asking where the baby is. He loves to give hugs and kisses, and he is just so sweet. I cannot believe how quickly my babies are growing up. Micah turned 23 months on the 14th…next month he’ll be 2 years old! Amazing.

Perhaps the other shoe has dropped. Every day, my mother tells me that things have been going so well that she keeps waiting for the other shoe to drop. Me, too. Perhaps today it did drop.

Mom had a really rough night last night. She was up all night with a headache and needing to go to the bathroom every few minutes. She seemed a bit weak, and I was definitely concerned. I sent an email to Dr. Holdhoff to inform him about her cough and her headache. At 7:30 this morning, there was a knock on the door – the home health aide from the agency showed up one hour early. She looked like she was about 12 years old, and I was really irritated that I was unable to sleep because she showed up early. She sat out on the couch while my Mom napped and the kids slept.

Around 8:00, the house started to come alive. Micah woke up first, and I sat him at the table and made him pancakes. Maya woke up next, and I had Elliot spend some time with her before I nursed her. My Dad got up and showered, and by 8:45, my Mom was waking up, too. I sent the caregiver in to help get her ready. She was clearly inexperienced…she had a very long list of all the things she did not do (like transfers from the bed or to the wheelchair or commode), so I ended up doing all of that this morning. She did manage to get my mother bathed and dressed (but I had to run in and explain a whole lot of things to her). I can say that I was relieved to let her go after a few hours.

I became worried about my mother when there was blood in her stool…and shortly thereafter, her nose started bleeding. The home health nurse was present and drawing her blood, and we were waiting for PT to show. We had been told by the doctor to call if we saw any signs of abnormal bleeding like nose bleeds, so I gave him a call. As I suspected, he told us Mom would need a platelet transfusion again. We then learned that they expected us to drive to their office to pick up a prescription. Then we were supposed to drive to a lab to have her bloodwork done for type and cross (and wait an hour or so). Then we were supposed to drive to Suburban Hospital for the transfusion.

I explained that all that traveling would be a hardship on Mom. They were not sympathetic – all they said was that the transfusion was important and I should want her to have it. I tried to explain that I did want my mother to have a transfusion, but that it would be logistically impossible to jump over all those hoops with her. I asked if the blood the home health nurse drew would work, or if the hospital could draw blood when we got there. They kept insisting that there was no way to do all these things in one place. Finally, they agreed that Mom could get the platelet transfusion if she went to the ER at Suburban to get admitted, and she would be released after a few hours.

Mom did not like the idea of going through the ER, but when I told her our options, she agreed that the ER route seemed the easiest. We were supposed to wait for them to call us when a bed was available, but after 2 hours, we decided to head in to the ER. When we arrived at the hospital, Mom got nauseated and started to vomit.

Because she wasn’t feeling well, they did a CT scan to check for brain bleeds. Good news – no bleeding! They told us Mom had a fever, and the CT scan picked up a sinus infection. They drew some blood cultures to see if Mom had a blood infection, and they expressed concern over possible meningitis. Mom’s hematologist, Dr. Boccia, and her medical oncologist, Dr. Holdhoff, are working together to manage her case. Both have privileges at Suburban, but Dr. Boccia is the lead. They decided to treat Mom with broad-spectrum IV antibiotics. Because of the infection, she was admitted to Suburban for observation. They are giving her platelets, they decided to give Mom a shot to boost her white blood count (her oncologist was initially against this because he thought it might trigger the cancer cells to grow, but the hematologist felt her white blood count was too low to fight off this infection, so they eventually worked out a treatment plan), and they will monitor her there to make sure she recovers well. We are hopeful that she will be released on Wednesday.

Dad and I stayed with Mom until almost 8:00. We made sure she got dinner, and we think (well, we hope) that they have her medications sorted out. She is in a nice private room on the oncology floor at Suburban, under Dr. Boccia’s care. Her nurses seemed nice, and we decided to hire a caretaker for overnight so Mom would not feel alone or scared. Krystal will meet Mom at the hospital in the morning, and Dad and I will return as well. We had to cancel her therapy and our interview with another caretaker, but we hope to do all that tomorrow.

Dad and I got home around 8:45, and so far both children are in bed. Anyone want to bet about whether we actually get to sleep through the night? I say the good money is on screaming children overnight!

Damn – lost my entry again. I just entered the entire thing and the system glitched! That makes me crazy. Here is the short run down:

• Mom was up at 1:30, 3:30 and 7 last night – rough night.
• The kids slept until 8.
• I took Micah to swim class at 11.
• While I was out, Wendy, Schwuing, Ruby and Pat (Mom’s co-workers) came to visit. Ruby brought couscous (thank goodness – my Mom has been talking about it all week). They also brought beet salad and a fruit basket. Thanks!
• She had polished off 2 bowls of couscous by the time I got home.
• Micah sat at the table and joined them for lunch.
• Diane and Joey arrived as they were leaving – they brought a defrosted kugel and a babka.
• Steven and Gail arrived next for a visit.
• Mom did really well with the stream of visitors.
• Micah and Maya were napping, and Mom went back for her nap a little after 3.
• I took a brief nap around 3:30 while waiting for Sharon and Eddie to arrive, and Dad went to the store.
• Sharon and Eddie did arrive…and ended up walking through the house while all of us slept!! They left a babka with a note for us…we felt terrible that we missed their visit. We do need to start keeping our door locked, though.
• We had dinner at 6 – mostly leftovers. Dinner conversation sounded like this: Can I have some of Ruby’s couscous? You have a bowl in front of you. Oh. Can I have ice cream? After dinner, Mom. Okay. Can I have more couscous? Sure. Do I have more couscous? Yes – right in front of you. How about that ice cream? Mom, the rest of us are still eating and there are meat dishes on the table – can you wait until we’re done with the meal to eat the ice cream. Sure. Can I have ice cream? Mom – remember, we have to wait until the end of the meal and I promise, you’ll get ice cream. Right. Can I have couscous?
• Sharon and Eddie called to say they were still in the area, so we rounded out our night with a visit from them.
• At 8, Mom headed back to her room, and we had a meeting with the architect.
• We finally selected a contractor for our renovation – we hope to sign the contract tomorrow.
• Mom has been up all night not feeling well…headache and nausea. We’re a bit worried about her. Not sure if this is brain swelling, or eating too much, or the change in medications, but it isn’t a good night here
• Maya just woke up at 4:30…she is screaming, too.
• Elliot forgot to give Micah his reflux medication – so I suspect he’ll be up screaming in the next hour, too.

Fun night in the Brodey-Harkavy household.