The word of the day is, you guessed it, compartmentalizing. Before going to see my mom today, I was having one long meltdown. I had no idea how I was going to keep my emotions in check during my visit when all I could think about was how this, in all reality, was probably my last Mother’s Day with my mom. I didn’t think I could do it and found myself making that my mantra while getting ready. Not to mention the fact that I’m childless not by choice so Mother’s Day is an emotional day for me anyway. Needless to say, my emotions were at an all-time high. Driving to the hospital I had a heart-to-heart talk with myself. I told myself that my main goal was not to cry in front of my mom and upset her. I also told myself that my emotions could not control me today, that I had to control them. Enter the idea of compartmentalizing. Mentally I created a room in my brain that had concrete walls three feet thick and encased in titanium and stuffed all the emotions I had been feeling this morning and slammed the door and locked the twenty padlocks on it and headed into my mom’s room. She had been put back on BiPAP this morning because her oxygen levels dropped again. The first half hour or so my mom just kept asking me to take her home. I could feel those concrete walls cracking in my brain and I just forced myself not to think about it. I had to tell her several times that the doctors feel that she just wasn’t ready yet. And she seemed to accept my reasons only to ask me seconds later when she could go home. At one point I mentally added another foot of concrete to that room. All in all, though, I got through it without breaking and, as I walked out, I felt pretty proud of myself that I was able to control my emotions and didn’t let them control me. I did what I thought was impossible.
I climb into bed and under the covers
And tiredly settle in.
Just as I’m almost asleep
My brain begins to spin
I take deep breaths and try to stop
My thoughts from where they want to go
But there’s no use for it’s time
For the nightly random quiz show.
First up tonight name my teachers
From Pre-K to grade six
Once I pass that round it’s on to
How many centimeters in a yardstick
Round three involves a tv show
That’s 40 years old.
Name all the Walton children
In order youngest to old.
The final round of the night
Is always the hardest of all
But my brain will not let me rest
Until I’ve answered the call.
Solve the problems in your life
Both major and the small
I lay back in bed and groan
And let out an exasperated sigh
At this rate sleep will come
When the dawning sun is nigh.
I went and saw my mom today in her new room at the hospital. She was sitting up in bed with only the oxygen mask on and the BiPAP was sitting off to one side. She looked much better and her voice was stronger than it had been on Wednesday. A few minutes after I arrived, the nurse came in with her breakfast. There was a plate of pancakes that had been cut up into tiny pieces and looked like it had two cups of syrup mixed in. It looked so overly sweet, but my mom didn’t seem to mind it. There was also some yogurt and a cup of thickened cranberry juice. Over the next 45 minutes, she ate more than I thought she was. My sister has been comparing her to a baby bird when eating and she definitely fit the description today. There were points when I couldn’t get the next bite to her fast enough, although she was very careful when chewing and swallowing. It was so good to see her eat again.
After she finished, we were chatting and she kept showing signs of mental confusion that threw me off balance in terms of how to respond to her. She kept asking me how “mama” was and if she was worried about my mom. Her mother died in the late 1980s, so I really wasn’t sure how to answer her. Do I tell her that her mom was dead? Do I play along with her and respond as if she was still alive. I wrestled with that dilemma for a few seconds when I decided that the best option was to play along. So I simply told her that “mama” was worried about her and hoped that she was getting better. She looked at me for a moment in a very confused way and I had to wonder if she thought I was the one who was having a mental lapse. Finally, she just nodded and moved onto the next subject. I had never dealt with mental lapses in my mom before and it was very surreal. I just hope I made the right choice to play along with her at that moment. A very short time later she began to doze off so I decided to leave. She asked me if I was coming back tonight and I told her I would see her tomorrow and she asked if she was going with me and I had to explain to her that she needed to stay in the hospital. She asked me why and I told her that the doctors were still very concerned about her breathing and swallowing and if something went wrong that she was in the best place to get a quick response. She weighed that response for a minute and then nodded and we said goodbye to each other. I’ll update again tomorrow and relay what new adventures awaited me on this journey.
I took a personal day today and didn’t go to the hospital to see my mom. I guess when my sisters and brother got there she had been moved and was very disoriented and confused and calling me. The nurse told them that she had been doing that for a while. When my sister told me that I felt so horrible and guilty. I felt like I should have been there and felt so selfish for wanting a day of normality. And yet, I needed it. Yesterday afternoon it was like I ran into a solid brick wall emotionally and physically. I was doing ok until mid-afternoon when my brain just kind of said it was done. I couldn’t think straight at all and at first, it worried me. Then I realized that all the stress of my mom’s illness had finally caught up with me and I needed to take time away from it all. I’m going back to see her tomorrow and I’ll share more of an update with you all then.
Mom continues to make steady progress although she did have an episode where her oxygen levels plummeted and she had to go back on BiPAP for a while. They are no longer talking about a feeding tube, for now, and she is enjoying some real food again. This afternoon she had pureed macaroni and cheese and a thickened orange drink that was fortified with protein powder and nutrients, which she said was very good. We can see her getting stronger now that she is eating food again. However, whenever the topic of her recovery comes up her forehead crinkles up and she gets an overwhelmed look on her face. She knows how long it is going to take and is very frustrated by how hard everything is for her. The most important of those things being her breathing. The consensus among my siblings and me, for the moment, is that we will fight for her recovery as long as she wants to. It just feels like we are walking down this road that runs along a cliff and that at any moment the life that we all know will just fall away from us into some abyss.
The other day when I was visiting my mom in the hospital, she had BiPAP on so it was very hard to understand what she was saying. That came back to haunt me today. During my visit today, she started talking about that and how I couldn’t figure out the word “eat” after figuring out the letters “e” and “a.” She went through the whole scenario and then declared me to be a “dumbass.” I knew I heard her correctly but it took me a second to fully process it.
“Did you just call me a dumbass?” I asked her.
She responded by emphatically nodding in the affirmative and then gave me the biggest grin I’ve seen on her face in weeks. It just made me laugh out loud. Then she called my older sister over to her bedside and told her she was in “deep shit” and once again grinned. She was totally playing with us and it was glorious to see that side of her personality again. Even in her weakened state, struggling to breathe, she still has her sense of humor. That is what I admire most about her, her ability to laugh even in the darkest times of her life. It has gotten her through so much pain and heartache and I am hoping it gets her through this as well. But from now on, I am officially a “dumbass.”
I saw my mom today and she was off the BiPAP and had a high flow cannula in her nose that was helping her breathe. One of the first things she asked me today was if she had missed the wedding. At first, I wasn’t sure what she was talking about but then I realized she meant Prince Harry’s wedding. I told her that she hadn’t missed it and she asked me to record it for her. I had to laugh to myself, here she is fighting to breathe and yet she is worried about missing the big event. But, that’s my mom. She is still only allowed to eat pudding, ice chips, and applesauce because her swallowing muscles are still too weak and they are very concerned about her aspirating food into her lungs and getting pneumonia again. They are talking about putting in a naso gastric tube to get nutrition into her. But the trouble is they can’t do that until she is off BiPAP because the tube won’t work with the mask. So, we can either help her breathe or feed her. It’s an obvious choice but a very difficult one as well. The current plan is to wait and see how she does tonight and hopefully they will be able to wean her off the BiPAP sometime this week. For now, her care team is sounding more hopeful that she is going to pull through. They are making it very clear though that if she does, it will be a very long road.
Another day of ups and downs. My mom’s swallowing test did not go well at all. She just doesn’t have the strength yet to swallow food so it’s ice chips and pudding for her. She was also on the less invasive bipap but we had an incredibly difficult time understanding what she was saying so they put her on a smaller mask for as long as she could handle it. The nurse threw out the word “hospice” for the first time today as well. So, while we are still hopeful, the reality of the future is creeping in more and more.
Mom’s extubation was a complete success today. She was communicating with head nods and shakes beforehand and letting us know that she was ready to have that tube out of her throat. Afterward, she was placed back on BiPap, which is a less invasive form of intubation, and was holding her own on that. So, we are all hoping she will have a quiet uneventful night tonight and tomorrow they will assess her ability to swallow and hopefully she will be able to eat something. Yep, you read that correctly, she wasn’t allowed to have any food at all today and believe me she was hungry. Keep the prayers and good thoughts coming and I’ll continue to keep you all posted.
Tomorrow is most likely THE day! My mom had another really encouraging breathing test today. She was able to breathe pretty much on her own for almost 6 hours today and she was communicating through nods and head shaking. She let us know that she wanted to go home. Which made us all smile. The doctors feel she meets enough of the criteria to be extubated tomorrow morning. We are all tremendously anxious about it because once the tube comes out there is no going back. Either she will recover or she won’t. There is no in between. So while I am pleased and immensely proud at how far my mom has come in the past few days I am paralyzed with fear with what comes next. Thank you for all your support so far and I hope it is ok to ask for continued prayers and good thoughts moving forward.