This paragraph is background information for any readers that have not read my blog before.
My mother was on a ventilator for almost two months. I was her advocate and her support. The process was exhausting, and became the catalyst for an amazing transformation that occurred in me after my mom recovered.
This is Part 5 of my email excerpts. My emails started as updates to my family but then I had the realization of the therapy I achieved from writing them. Support poured in to sustain me. I continued my writing with this blog and soon my music followed.
In this section, I had no idea if I’d ever hear my mom’s voice again. I was struggling with taking care of myself; I was discouraged about how much weight I had gained. Since I’ve started writing in February, I’ve lost thirty pounds.
Toward the end of this section, my mom was doing well with the weaning process. She was being readied for transfer to a respiratory program at another hospital called Barlow. It was highly recommended. Unfortunately, her experience at Barlow turned out to be a nightmare. I watched her waste away as she lost 25 pounds in a very short time.
December 26, 2009
Well, I saw my mom after my tennis game. I felt so great after playing, and in some ways that made it harder to go to the hospital. I would give anything to be able to call her and talk on the phone like we did only six weeks ago.
She opened her eyes for me, briefly, and didn’t keep them open too long. I talked to her; she was very happy that I had played tennis. I could feel it.
I’m planning to take my dad back with me tonight. Also, I’m going to see if the hospital rabbi can come for a visit to see mom.
December 27, 2009
I just got back from visiting mom – I brought dad with me.
I would definitely consider it a wonderful visit. She looked relaxed when I got there, and dad burst into tears when he said hello. I chatted with her, and read her some cards she had received. Believe it or not, dad was so cantankerous that mom and I were laughing.
My mom liked the fan, and dad wanted me to turn it off. Dad’s impatience has risen to new levels. It’s hard to imagine that mom could laugh, because with the trach tube in – it makes a funny, honking sound. But it was amazing that she could see humor in the situation.
Then the Rabbi showed up! I didn’t think my mom would be able to appreciate her visit. Suddenly, her eyes opened wide and she was alert. The rabbi said a healing prayer (in Hebrew and in English). There was a respiratory therapist who was working on the other side of the bed. She was moved to tears, and said it was the first Hebrew prayer she’d ever heard, and that it was so beautiful.
The rabbi sang and my mom was nodding and smiling the whole time. By the time she finished, my mom was really beaming. It was quite beautiful.
I only wish I could have seen my dad smile.
December 28, 2009
I am just so upset! I just came back from seeing mom at 9:30 this morning. She did not open her eyes. She did not respond to me hardly at all. I asked her if she could hear me, and she gave the slightest nod.
I raced over to the nurse, who told me she had been given Morphine. I was beside myself – I wanted to curse so loud! Only on Friday night, her doctor made an emergency visit for her unresponsiveness.
He clearly stated that Morphine should not be given because it depresses her respiratory system. I guess for some reason, it was not taken off the medication list. I called the doctor on call, to vent on his message machine.
As I was leaving, I ran into the rabbi – I burst into tears, and she was very understanding.
The main thing is that mom now cannot take any meds for pain. Even the Tylenol knocked her out the other day. I hate to see her so weak, and it’s hard for me to figure out how she will be able to get stronger.
I’m learning so much about the respiratory, medical realm; I did know a lot about pediatric cardiac abnormalities after dealing with Jason. Now I remember how I did this in a very, very intense way for five years.
I haven’t slept well, because I wake up with my mind imagining how it might feel to have a trach tube in my throat and a feeding tube down my nose!
I’ve tried not to be tearful in front of my mom, but she saw my tears when I came in to see her later on in the day.
I told her my tears were due to the joy to seeing her looking so great – and she did! She pulled me in to kiss me, and she was bright and alert – I could hardly believe it! Just when I felt so down on the roller coaster, she brought me back up again. She was able to listen, nod, and laugh at my jokes. I think this was the most alert I had seen her. She looked very comfortable when I left.
She was full of smiles, kisses, and with all the tubes and wires surrounding her – she was an inspiration and an amazing picture of what the will to survive really means.
Fortunately, I had a hypnotherapy appointment. It has really helped me in so many ways, and saved my life.
December 29, 2009
I was so upset when I heard my mom pulled her nasal feeding tube out again! I know it has been irritating her so much, and tomorrow at 3 p.m. she’ll have the other tube put in her abdomen, thank god. It’s been 3 1/2 weeks, and her sinuses must really hurt.
After we talked, I called ICU to find out that they put it back in; it seems so unnecessary! When they put it in, my mom pulled it out again despite being in restraints! Then they put it back in AGAIN, and took an x-ray; it was on her hernia, and would have to be repositioned. The nurse was in the process of paging the doctor.
I told her that they should just LEAVE IT OUT. I’ll check back soon to find out.
I did play tennis, but my focus was gone. Still, it was a beautiful day. I’ve been feeling depleted. I am so out of shape! I just need to maintain my equilibrium, and not worry too much about my weight right now either.
At the hospital later on, I met with the discharge administrator. He wanted to know if we were okay with mom being transferred to Barlow. There were two openings today, but they were already filled.
December 31, 2009
I saw my mom this morning, since she had the G Tube put in yesterday afternoon. She is doing great on the zero ventilator setting, only getting slight pressure support. I know she is on her way!
I received word that she is going to be transferred to Barlow on Monday. Their treatment is considered more aggressive, and she will need therapies to speak and eat again – they do all that.
I wish I were able to read her lips, because she is trying so hard to ask me things. We did try a paper with letters, but she is still too weak to see and point. I’m just hoping she’ll be completely off the ventilator very soon! Hopefully, she’ll be able to have the trach and G tube removed someday.
January 1, 2010
My mom sends her wishes to everyone for a wonderful New Year. She wants to thank everyone for their continued prayers for her recovery. I have shared everyone’s beautiful messages of support, and my mom has appreciated all of the love coming her way.
A picture can be worth a thousand words . . .
January 5, 2010
I received a call this evening from mom’s doctor. She will be transferred to Barlow tomorrow!
I don’t know any more details, as far as what time she will go. I’ll try and make sure her Ipod/headphones, neck pillow, and long pillow go with her.
I called to speak with her nurse this evening; I let the nurse know to tell my mom what is going on. Mom is so aware of everything and very excited; I know she has been quite hungry, too.
I can’t wait to hear her first words soon, as well as watch her eat food again.
I sound like the parent of a child, but it truly is going to be wonderful!
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