It is 2:30 am, and instead of pumping, I am nursing the baby again. She so rarely wakes up in the middle of the night like this! Hopefully, she’ll fall back to sleep shortly and sleep through the rest of the night.
As expected, today was an extremely long day for my mother, and exceptionally exhausting. She was a trooper, and truly hung in there. In fact, she did much better than we had anticipated!
The kids slept in for me this morning – Maya woke up around 8:30, and Micah slept until 8:45. We brought them both into bed for a little while, but we went downstairs before 9:00 am. My father and I spoke a few times this morning…I checked in with him to remind him about getting my mother’s medications for the day and a list of other supplies we might need, and he also called to tell me that the wheelchair transport was running about 30 minutes late.
Megan arrived a little after 9, and I took some time to shower and get dressed. While I was getting ready, I noticed a huge leak in our bathroom from all of the rain…part of the ceiling and the wall were falling down. Not really a surprise…we’ve had roof issues for a long time that were supposed to be corrected in our last renovation. Unfortunately, our contractors did a terrible job, and created some new problems and failed to fix some of the items. Luckily, this addition we are starting should address the problems. In the meantime, Elliot found the source of the leak, and managed to put a temporary fix on the problem.
Megan arrived at 9:00, and I managed to get out the door with Maya at 9:30. While in the car, I spoke to my father again, and I learned that he had not gotten all of her medications for the day. He did get a few of the critical medications (like the chemotherapy drugs), but he did not get her insulin, her Tylenol, or her medications for her intestinal issues. I was worried about getting through the day without all of her medications.
Despite the heavy rain and poor visibility, I made great time getting to Hopkins, and arrived there around 10:30. I called my parents and found them over at the Wilmer Eye Institute just as the appointment was beginning. We started out our appointment with a young doctor who asked a lot of background questions and did some initial screening. She decided to send Mom downstairs to have a field of vision screening test.
Initially, the doctor wanted Mom to transfer into a chair, but when I realized that it had limited support, I knew Mom would not be able to stay in the chair and hold herself upright. We used a bit of creativity, and managed to bring Mom’s wheelchair into the room. She needed a little help lining up with the machine (she had to lean forward and place her chin on a rest and stair at a dot in the center of the machine), but we got it working!
I helped support Mom’s back during the test while my father sat with Maya outside the room. The test was quite fascinating – my mother leaned into a half sphere, and with one eye covered at a time, she was asked to stare straight ahead at a center point and press a buzzer when she could see a light enter her field of vision. As mom leaned forward, this device that looked like a flashlight on a manual arm bobbed and weaved behind her. It was obvious to me that my mother could see nothing on the left half of the sphere – there was a clear center line, and for each eye, she missed the light any time it was on the left side of that center line.
After the field of vision test, we tried transferring my mother into the examination chair so that they could do another test. Unfortunately, she was not able to line herself up appropriately or see what she needed to see, so they were unable to conduct the test. We transferred Mom back into her wheelchair and returned upstairs.
At that point, she started to complain about being tired. We reclined her in the chair and gave her some water. We waited for another 15 minutes, and then went into another room with the primary doctor – Dr. Goldstein. She was wonderful. They were able to keep Mom in her wheelchair and do a standard vision test. What we learned is that with her glasses on, my mother’s vision is excellent – when she can find the letters, she can read them perfectly. The biggest challenge for my mother is putting things within her field of vision, and remembering to scan to the left to find things outside her field of vision. This problem is called neglect.
After the vision test, we were taken to meet with the low vision occupational therapist, Cat. While there, my father ran out to get us all some lunch, and we ate while we met with Cat. She was a huge help – she ran a number of tests, did a cognitive function test, and started to teach my mother a few techniques for scanning. She gave us a list of suggestions for helping my mother as well. For now, Cat does not think insurance will allow us to do therapy on an outpatient basis until my mother leaves the inpatient rehab at Levindale. She gave us a few devices to buy for mom in the meantime, including a talking watch and a light. Cat will talk to the occupational therapist at Levindale and give her some suggestions for the therapy, and we will start working with Cat upon my mother’s release.
After we met with Cat, we went down to radiation – we did not get there until 2:15 or so. Radiation was running very late, and it was nearly 3:00 before they took my mother back. We met with the nurse to discuss the fact that my mother has been getting headaches recently. We need to watch this carefully, because it could be a sign of brain swelling, and her steroid may need to be adjusted.
After radiation, we waited for the transport to head back to Levindale. It was nearly 4:00 before we returned. We learned that Mom’s roommate had checked out, and we were able to move Mom to the front bed in the room – good for her vision. Mom was extremely impatient while we waited for the room changeover, but we finally got her back in bed around 4:30. Jeremy had joined us and helped us keep Mom company while we waited. After the changeover, Dad left, and Jeremy and I stayed behind to help Mom with her dinner (she ate the chicken salad from Panera tonight). Jeremy did most of the helping – I sat and nursed Maya for the trip home.
Jeremy and I both left about 6:00 pm. On my way out, my mother called – she was just practicing with her phone! Cat had told me that I had picked a good phone, and we just needed to work with Mom on training and use of it. I made good time getting home, and spent the evening with the children. Micah went to bed early, and Maya initially fell asleep at 8:40. My mother called again to tell me she had been up and watching NCIS (Jeremy had turned on the tv for her) and she was going to try and sleep. I ordered a talking watch for my Mom and I found a few of the other devices Cat recommended today. We are going to try and start working on a crochet project, but I think I need to order one more device for my mom this week to make that possible.
Unfortunately, Maya woke up again at 9:15 and then again at 2:30. It is 4:00 am, and she is fussing again, so I’m going to go upstairs and try to nurse her to sleep. Mom sounded great, and did really well today. My Dad called this evening, and the nurses said she was having a good night. Hopefully, she’ll still be in good spirits in the morning!