Today was a good day. Amazing to me, especially since I was up all night last night – I didn’t even attempt to lay down until 7:00 am. It has been a long time since I’ve been able to utter that phrase, but in the context of this nightmare, today was a good day. The kids woke up around 8:00 this morning, and I nursed the baby and we decided to bring Micah into the bed to cuddle a bit before breakfast. Micah loves to burrow into the bed and pull the pillow over his body and say “night night.” He snuggled in bed with us for a bit, and spent a ton of time pointing out our eyes, nose, ears, mouth, teeth…and then he discovered the baby. He spent the next few minutes poking her eyes out and trying to lay on top of her and give her a hug.
I called my father around 8 or 8:30 this morning to see how mom was doing and talk to him about the many adventures of Micah and Maya…they are always good for a smile. He said the nurses had told him Mom was more awake today and more verbal. Naturally, I was afraid to read too much into that because I hate disappointment.
In another comic moment, after the call with my father, I went to the bathroom…followed in, of course, by Micah. He watched intently as I went to the bathroom, and felt the need to announce “Mommy poo poo.” As I flushed the toilet, Micah made sure to clap his hands and say “Mommy yay.” I was grinning, and wanted to ask if I could get my gold star. Naturally, I called my father to share the story, and I could hear him smiling over the phone…a genuine smile amidst all this sadness.
Around 10 am, my friend Tami called to tell me that she and her mother were on their way over. I was quickly showering and we were working on getting the kids dressed while we fielded phone calls. They arrived shortly thereafter, and we sent Micah off to synagogue with Elliot, and then Tami and Bobbi took me and Maya up to the hospital to visit my mom. When we arrived, I decided to skip breakfast and go straight to the room, even though I knew Maya likely wanted to nurse a bit.
I got upstairs, and much to my surprise, my mom was awake and talking. She was speaking clearly and knew exactly who I was and where she was. Her right eye was very swollen and purple – looks like someone popped her one. I held her hand and asked how she was…and she told me she was dying. I was a little stunned, but did my best to reassure her. She then proceeded to ask me for help – she said the nurses were trying to kill her. I quickly realized that this was a side effect of the medications she was taking, but it was still worrisome to see. It actually reminded me of my grandmother when she was in the hospital.
My mom began complaining about the feeding tube they had put in through her nose…she said it was hurting her throat and choking her. I asked the nurse if they had tried her swallow test again this morning, and was informed that she had choked again. I tried explaining it to my mother, and she told me that I was trying to kill her, too. At that moment, I couldn’t help it…the tears and hurt welled up. While logically I understand that it was the medicine talking…it still hurt to hear my mother say I was trying to kill her. I calmed myself down while the nurses moved my mother from a bed to a chair and sat her up. My mom again called for me and asked me to help her because the nurses were trying to kill her.
I reminded her that the doctor had ordered the tube, at which point she said “Yes, Dr. Olivi – he was in earlier today, and I asked him to take out the tube and he didn’t help me either. He is trying to kill me, too.” It was with that sentence I felt some relief…because she remembered the doctor, recognized him, and knew he had been in to see her.
I then told my mom I would ask them to repeat the swallow test later, and when she heard me asking, she started to believe again that I was helping her. I called my dad and gave him an update to prepare him, and she asked him to come help her, too. I got some swabs for my mom, and began to swab her mouth. She thanked me and asked for a drink or ice chips. When that request was denied (by the nurse) she asked if the swabs could be cold, so I asked the nurse for a cup of ice water. I began dipping the swabs in the ice water, and she told me it was much better.
When the nurses were gone, my mother kept begging for ice chips. I remembered that when my grandmother was sick in January, my mom would sneak her tiny ice chips even when they had restricted her due to swallowing problems, so I felt I should try and do the same. I only gave her the tiniest of chips – not enough to cause any choking or aspiration, and it truly brought her some relief. She started to calm down as I stroked her arm and scratched her back.
By the time my brother arrived, she had stopped accusing everyone of trying to kill her. She was loudly complaining about the feeding tube and asking for it to be removed. When we explained that she failed her swallow test, she kept insisting she could swallow and would demonstrate it for us. She ordered me to get the nurse back in so she could prove she could swallow.
We began to talk to my mom about all the messages we’ve been receiving – in the mail, by text, on facebook, and here on this web site. My mom was touched, and she told us to thank everyone for their kindness. I told her about this web site, and we read her many of your messages of encouragement and love, and she was thrilled. She laughed at inside jokes…like her friend Faye’s reference to my mom being her “oldest” friend, and she appropriately responded and announced to us that Faye is 10 months older than her. It was wonderful. About half an hour after I told her about the web site, my mom turned to me and said “Hey, Jess, could you do me a favor? Could you post a message for me on that web site?” I started to well up, thinking my mom wanted to post a message expressing her gratitude and thanks for the outpouring of support. She looked at me and said “Can you tell them to come and check on me? Because they’re trying to kill me and no one is helping me.” I have to say, I laughed, because in the moment, I think she really did mean to express her gratitude and reach out to those around her…but it just kind of came out backwards because of all the meds. So, on behalf of my mother, I want to extend her gratitude and love for all of you and your kindness to us during this time.
I spent half the day trying to get her brisket recipe…she was quite suspicious of why me, her vegetarian daughter, wanted the recipe. I talked to her about her friends who were planning to visit the next day, and she said she was looking forward to it. She spoke to a few people on the phone as well.
We talked to her about passing the swallow study, and said it was important for them to understand that when she was coughing she was clearing her throat because of the tube irritation, not because she was choking. After that, EVERY time she cleared her throat, she announced “I’m not choking.” Except one time…when she announced “okay, so I choked a little.” It kind of reminded me when she tells me something (like I promise not to tickle your chin) and then she screams “I LIED” as she dives for my ticklish spot.
I saw the doctor briefly in the afternoon – he said he was amazed by the change in 24 hours, and he was encouraged that we could possibly stabilize her…for now. Nevertheless, it was a little glimmer of hope, and we needed to think we could have even just a little more time.
My mom accidentally knocked her feeding tube out in the late afternoon…while the down side was they needed to reinsert it, she was tube-free for about 3 hours, so it was a nice break for her. Tami and Bobbi watched Maya for me until about 3. They kept me company during lunch, and then said their goodbyes. Right around that time, my parents’ friends Gail and Steven arrived for a visit. They spent time with my mom, watched the baby, then took my father out to dinner. We decided to leave around 7 – my mom was getting sleepy, they were reinserting her tube, and we hoped she would have a comfortable night.
If she continues along this path, they may be able to move her to a regular neuro inpatient floor in a few days. They may even be able to get her to rehab. IF. So, let’s hope tomorrow is an even better day, and that IF happens.
So, tomorrow we will be there in the morning. We are expecting some of her “oldest” friends to come down for a visit, and one of my best friends, Heather, will be joining us to help out. In fact, I’m racing to type up this update before Heather arrives to give me a bit of a break tonight. If I have my glass of wine tonight, I’ll be drinking to more “good” days.