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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!
