All day long, I make mental notes of the things I want to write here, or the things I want to tell my mom when I see her. Naturally, I tend to forget most of those things by the time I sit down to write, or by the time I see my mother. When I’m having a good day, I jot down little notes when things pop into my head. Tonight is one of those nights…I had about a dozen things I wanted to share, but my mind is currently blank as I sit down to write.
I am almost afraid to say it, but I think we may finally be reaching a better place for my mother. Most of our days seem to be good ones, and that has been such a relief for all of us. I think we’ve finally “broken in” the staff at Levindale, and we seem to be on the right track.
Last night was a much better night for Maya…she fell asleep around 9 pm, and slept through until 8:30 this morning. Micah woke up around 8:15 – I went in to get him and brought him downstairs. Maya and Elliot joined us about 30 minutes later. Micah has just been adorable lately. Aside from his Elmo obsession (Micah wakes up saying “Mommy? Daddy? Elmo, please!”), he spends a lot of time naming body parts. His newest word is “arm” – I cannot wait for my mom to hear him, because he says it like he is from Boston – “ahm.” My mother loves to mimic Boston accents, and often teases her friends Diane and Joey (who are from Boston) by telling them they “talk funny.” I’m sure she will love listening to Micah’s new-found Boston accent.
Megan arrived at 9, and within moments, Micah confiscated her keys. He loves to walk around with her keys all day long. They left for Micah’s Kidville class, and Elliot, Maya and I headed up to Levindale. Our plan today was to go up early, stay with my mom through radiation and then return home early. The best laid plans, right? Or, as my mother always says, “Man plans and G-d laughs.”
We arrived at Levindale and my mother was down in therapy. Delicious and I joined her there, and she was doing really well. They had decided to put a knee brace on her, and worked on standing. She actually was standing for about 7 minutes (with support), but the knee brace kept her left leg from buckling under. I had actually asked the therapists at Hopkins to try a knee brace, but they did not think it would work. I was glad to see someone else came up with the same idea! Mom also sat upright without support for about 10 minutes, and she was doing a good job of using her left arm.
After therapy, we went upstairs to finish our care planning meeting that was postponed from yesterday. My father had arrived, and we sat in the conference room with the social worker, the floor manager, the nutritionist, the recreational therapist and the therapy coordinator. We started out talking to the nutritionist – my mother had a chance to ask why her food orders are often wrong, and the nutritionist apologized and said she would look into it. The recreational therapist went next – my mother told him that he should come by and tell her about the different activities, and if she was around and felt like joining, she would.
The bulk of our meeting focused on therapy. We talked about the different type of therapies my mom is getting and the goals for the therapies. We talked about how my mother is more capable than some of the therapists realized, and we talked about her tendency to close her eyes due to her vision issues. We felt great about the goals – working on her core stability, increasing her use of her vision and reminding her to use her left side. The goals seem quite reasonable to me, and I think that they are things my mother can accomplish, too.
We also spoke with the social worker – they will be helping us identify the equipment we need once we return home. There were recommendations from Hopkins, but we think things will change once my mother completes her course of therapy at Levindale. She seems to be getting stronger each day, and we are hopeful she will be able to better use her left side and regain some of her independence.
We ended by talking about some nursing/medication issues. We informed the floor manager about the mistake in chemotherapy medication the other day, we discussed how they are administering her steroids, and we also raised some concerns about how they are administering my mother’s insulin. The manager was surprised that there had been a mistake with the chemotherapy medication, and she said she would re-check the system to make sure it doesn’t happen again. We also verified the times they are administering her steroids – turns out, instead of giving her the pills every 8 hours, they were giving it to her at 9, 2 and 8, which means that my mom was going 13 hours in between her last steroid of the day and her first steroid pill the next day. The long span between pills is the reason she has been getting headaches! They changed the timing of the medications, and now she will be getting her pills at 7, 2 and 10.
Our last issue – the insulin. Often, the nurses are declining to give my mom insulin when her pre-meal blood sugar is normal. The current plan is to give her an amount of insulin based on her pre-meal blood sugar, and then an amount of insulin intended to compensate for the carbs she eats during her meal. The doctor has been concerned that her blood sugar numbers keep getting above 180 every day, and they keep increasing the amount of insulin she should be getting with each meal, regardless of her pre-meal blood sugar. When the nurses disregard the order and do not administer the insulin, my mother’s sugar climbs, the doctors think the insulin is not working, and they raise the amount of insulin she should be getting, which makes the nurses more and more inclined NOT to give her the insulin. It is a vicious cycle! I’m hoping that the nurses will start administering the insulin as directed, and that we do not need to have this discussion again.
After the meeting, my mom ate lunch and Elliot ran over to visit our friend, Jen, who is on bedrest in the Labor and Delivery ward at Sinai. We left for radiation right at 12:45, and today, Elliot and my father drove to Hopkins with Maya and I rode in the transport with Mom. During the trip, I read her the blog and your messages. Donna – my mom is hoping to see you soon, and says she misses you! She also said that there are some people in life that just have a way of making others feel safe and cared for, and she said that you always have a way of doing that for her. So, thank you, and we hope to see you soon.
Mom was feeling well, but a bit uncomfortable and fidgety in the wheelchair. We had arrived early (about 1:20), and we learned that they were running quite late for radiation. My father stepped out to go check with the pharmacy about my mother’s chemotherapy prescription. While we were waiting, my mom and I chatted. We are working on a project together, and I am trying to see if my mother will be able to do some crochet work again. We had a pattern book we were discussing, and we started to pick colors for a new project. We also discussed her upcoming birthday – we are thinking of trying to go out to a restaurant for lunch that day with some friends.
When my father returned, he was concerned – her chemotherapy medication had arrived, but it was 120 mg, and she has only been getting 110 mg at Levindale. I was certain they had told us she was getting 115 mg at Hopkins, and we realized that we just did not know what the correct dosage should be. I sent a note to Dr. Holdhoff, her medical oncologist, to sort it out. He responded late tonight, and said he wants Mom on 120 mg. He said her ideal dosage was actually 114, and they usually just round to the nearest 10 mg, but he said it was possible that they were giving her 115 mg at Hopkins. She has definitely not yet been taking 120 mg since we started her treatment, and, of course, we are now worried about whether this is a major screw-up. Hopefully, we can get the prescriptions and orders all sorted out tomorrow.
At 2:00, they told us they were running at least another 1 hour behind. My mother asked to transfer to a bed to rest, and she ended up taking a nap for a little over an hour. She seemed MUCH better after her nap. At 3:15, they told us it would be another 45 minutes until they could see my mother. My mother’s friend, Diane, had planned to come and visit her this afternoon, but we were running too late to make that possible.
Elliot, Maya and I had to leave at 3:30 in order to get home in time for Megan. I apologized to my mother, and we left. The worst part – I not only had to leave my mom before she finished radiation, but it was several hours later than I had expected. Luckily, my dad called 10 minutes later to say that they had taken my mother back for her treatment. What a frustrating day! Radiation has been quite late most of this week, and I’m getting sick of it. I just wish they could run on time.
Elliot and I arrived home before 5. We had a good evening with the kids. I was exhausted and I tried to stretch out for a nap…but Micah just could not stop jumping on me. He was all about Mommy, and just could not let me close my eyes. Maya was also quite noisy – she just loves having attention! She has been such a smiley little girl, and she is loving her time in the evenings on the play mat (and no surprise, but she has been quite a hit at Levindale – all the Jewish grandparents adore her). We finally put Micah to bed at 8:30, and Maya fell asleep a little after 9.
Elliot and I were supposed to go visit a few houses tonight, but the real estate agent canceled on us. My father and I will go visit one house tomorrow night, and we have another visit scheduled for Friday morning. I am hoping we can quickly line up a house in the next week or two.