The saying is “no news is good news,” which I suppose makes today a good day. I haven’t heard anything about my mother overnight tonight, so I hope that means she is having a good night.
I never made it to bed last night…after all of the commotion, I sat on the couch waiting for the last call from my father that he made it home. When he didn’t call, I started to worry, but I was afraid of calling him and waking him up, too. I turned on the tv and sat and watched for a while. I must have dozed off around 7:30 or so, and the baby woke up around 8. Elliot brought her downstairs to me, and I slept on the couch a bit while nursing her. Micah was still asleep at 9:00 when Megan arrived, and he slept another fifteen minutes.
I made Micah eggs for breakfast, and he actually ate most of them. Megan helped me get the children dressed, and watched them both while Elliot and I showered and got ready to go. It was raining and disgusting outside, so Megan decided she would take Micah over to Laura’s house for the day to play with Merrick and Addie (my friend Niki’s children). After they left, Elliot, Maya and I got in the car and drove to Hopkins.
I got an interesting phone call this morning from a company who provides private companions and nursing aides at Levindale. We talked for a bit, and I asked the man to send me information – if my mother is repeatedly having issues, we may need to send someone to help in the evenings/early mornings, or possibly overnight. The company also provides caregivers for the home, so it is never a bad idea to have the name of a service.
The weather was terrible, but we still made it to Hopkins in good time…before my parents. Along the way, we learned that Jeremy would not be able to join us for a visit today…he was handling a huge flood in his basement. Ugh!! We tried parking at the valet service at the Cancer Center today, and it went smoothly. We waited in the family waiting area for my mom to arrive, and they got there around 1:35 or so. We were able to chat for a bit before the treatment. My mom seemed comfortable – no intestinal issues – and she was sitting up straight and doing well in the wheelchair. My dad had requested a Tylenol for my mom before they left, and that seemed to be helping, too. They took her back around 1:50, and we called for the return shuttle. Treatment went quickly again, and we had a moment to check in with the radiation nurse. The radiology techs asked us if mom would be doing an extra 7 days of treatment, and we were surprised. Apparently, it was authorized in the computer as a “possibility” but both the doctors and the nurse had previously told us mom would max out on treatment after 4 weeks. We will see how it goes, but we’ll do every minute of treatment they suggest, especially if mom continues to tolerate it well.
In other good news, my father told me today that their long-term care insurance received the paperwork and actually authorized my mother, effective immediately! No waiting period, no arguments…we can now make claims against the policy for anything we need that is not covered by insurance, so that is a huge relief.
After radiation, we decided that I would ride back in the transport with my mother and my father and Elliot would drive separately with the baby. Traffic was heavy, but we made decent time getting back to Levindale. Much to my surprise, my mom was willing to sit in the wheelchair for a bit longer after we returned.
Just as we got back to her room, the nurse coordinator and the social worker approached us to set up a meeting to discuss some of the concerns we had and how we can develop a plan to improve my mother’s experience. I have to say, I was impressed. It is not often that facilities come to you when there are problems – it is often a battle to find someone there even willing to talk! I had planned on reaching out to the nurse coordinator this afternoon, and it just made things easier when she came to us.
My mother, father, Elliot and I met with them for about 45 minutes. My mother was able to express her concerns, we were able to discuss the medications and insist that the nurses administer the medications (even the ones written “as needed”). We talked about the different consults we were expecting, and we devised a plan for moving forward. In addition, we had the opportunity to talk about my mother’s vision loss, and ways we can set up the room to make the experience a little less scary for her. They immediately agreed to help – first by changing the nurse call button in my mother’s room to something easier for her to find and operate. Second, they agreed to move her either to the “A” bed in the room (near the door) when one opens up or into a private room. From the front of the room, my mother would be able to see the door and the clock – both things that would make her stay a little less frightening.
Elliot and my father left shortly after the meeting, and I stayed behind with my mother. On the way home, Elliot detoured my father to pick up one of our building permits from WSSC, so it looks like we are fully authorized to start renovating the house now.
Mom slept most of the afternoon – not surprisingly, she was tired after the long night she had. The afternoon was relatively quiet as my mother slept. I was surprised that she did not have any therapy sessions scheduled – I will be looking into her schedule tomorrow, and trying to figure out how much therapy she is getting and what times (and see if they will give us a daily sheet).
Things seemed to go a bit more smoothly in the afternoon. The nurse today was nice (but I had to correct her several times on HOW to apply some of the medications). They seemed to remember and bring all of her medications (some a little late), but everything was being given. All I can say is some nurses don’t seem to follow directions – today’s nurse actually took a suppository, opened it up, and tried to use the medication as a cream instead.
The best news of the afternoon? Maya laughed! Not just a smile and a silent laugh, but a full-out rolling giggle with sound (and even a snort). It made my heart sing, and Mom was able to listen to her, too, and it gave my mom a huge grin. It is so wonderful to watch Maya’s personality emerge.
My mother’s dinner arrived around 5:30, and I left around 6:15. Once again, I made it back home in under an hour. Elliot and Micah left for Simchat Torah services tonight – Micah was adorable as he left the house clutching his Torah. During dinner, I sang to him a few of the Simchat Torah songs (“Torah, Torah” in particular) and he was clapping and singing, too! While they were out, Maya spent time playing on the floor – she was chatting and laughing and moving all about, and it was wonderful to see her getting that time to explore.
My mother called this evening to tell me that all was well. She was a bit confused about the time of day – she thought she had just woken up and was ready for therapy. I explained that it was nighttime, and that I had left about 2 hours before and would be back in the morning. She said she was fine and would see me in the morning.
It was immediately bedtime for Micah when they came home, and I had already put Maya in her pajamas and swaddled her tight. Micah cooperated with bedtime, but unfortunately, Maya did not. She fell asleep initially at 8:30, but she just would not stay down. We tried moving her at 9, and again at 9:30, and again at 10. All she wanted to do was snuggle and nurse. Finally at 11, I gave her to Elliot and said I was done nursing her because she was no longer hungry and I was too exhausted to do it for another minute. As long as Elliot stood and walked with her, she was quiet, but she certainly refused to go to sleep. I think it was around 12 before she finally crashed. Her schedule has been out of whack since the late night transfer to Levindale. I hope we can get her back on track soon.
I’m hoping to go visit my friend at Sinai hospital tomorrow…or possibly this weekend. I cannot bring the baby over, so I have to go at a time when someone is around to keep an eye on the baby. My next big hurdle…Sunday. Elliot is going to be gone from 6:00 am until 4:00 pm, and I have to figure out how to take care of 2 children all day and visit my mother. I may need to take Micah to Jen and Jeremy’s house and leave him there, if we can figure out how to plan that with their babysitter.
Oh, and if you are still out there, keep the messages coming! We are still reading the Journal and your messages to my mom each day, and she loves hearing them. In fact, we have more time each day with the transport to and from Hopkins. She is also receiving visitors again. I do not know her exact therapy schedule yet, but evenings are definitely good, and there is probably time during the day, too. We are gone Monday through Friday from about 12:45 until 2:45 for radiation, and weekends she just has therapy (although far less than she had at Hopkins each day). There are a few guest areas, and if there is more than one visitor, we should be able to move mom into a wheelchair and go sit there.