I’m sorry I didn’t write last night. Yesterday was a very hard day with Tracy. Here are some of the highlights, if you can call them that…?
When I first got there she was sleeping. I can’t tell you how much peace it gives us to see her resting. It has been so rare for me on my visits with her. Not long after she quickly awoke asking for water, a cold cloth for her head and that that she was hungry. This is a common complaint for her, but according to the nutritionist she is getting a whopping 1700 calories a day. Probably more than Tracy’s had in a very long time, given her strict diet and work out regime. “Paulie” the nutritionist explained to me that the hungry sensation coming from her brain is because there is no longer any signals to do with chewing, taste buds and swallowing. Her brain doesn’t think she’d gotten 1700 calories!
Shortly after this the physiotherapist (Shelley) came in to do her daily movements and ‘wrap’ her legs. They moved her to a special “chair” – really it’s just a smaller version of a hospital bed that is more upright. The process of moving her can be very painful and uncomfortable for Tracy. They closed the curtains so I don’t see her grimacing.
Once she was in the chair she quickly wanted to ‘talk’ – mouth words to me. More water, brush her hair, spray in special detangler, cold cloth not cold enough, move head, etc etc.
But then there was a moment where as I was brushing her hair and telling her about how handsome Christan looked in his new Crestwood uniform, and how well the boys were doing. TEARS started flowing from her eyes. I must tell you that up to this point I had not seen Tracy cry. I had thought I wanted her to cry, but then when it was happening I realized I preferred the non- crying Tracy. She sobbed and mouthed to me “I miss my boys”. I fought back my tears to stay focused and strong. I validated her feelings and said they missed her too, but Mom and Lynn were doing a stellar job.
In the late afternoon yesterday we had a “family meeting” with the head doctors, nursing staff and extended team – social worker, respiratory therapist, etc. It was like a full court press. I had a feeling the purpose of the meeting was to “scold” Tracy for some of her demands or objections, and I was right.
There were three things they wanted to convey:
1. Tracy was to allow them to “ween” her from the vent – it would be very hard work but if she continued to refuse the lessening of oxygen she wouldn’t get moved to a trache. More about this….
2. No more water! The little spongie stick like things that we put in her mouth had been soaked with water and she was sucking on them. The doctor informed us all that these are just meant to brush and wet her lips. There was water getting into her lungs. Although Tracy vehemently disagreed!
3. Objecting to be repositioned or moved. Several times a day they need to move Tracy’s position in the bed to alleviate bed sores or pressure sores. Their believed that she was objecting. I quickly interjected to say. She’s not objecting to be repositioned, what she’s objecting to is being handled roughly or mishandled. I went on to tell them all that I’d seen it happen. Not everyone takes care and compassion to move her! I could scream!
There are so many things I want to say about how the Doctor handled this conversation with Tracy. The biggest one is that I wanted to YELL at her and say she’s paralyzed NOT retarded, braindead or deaf!!!!! I couldn’t believe the slow, condescending way this woman was speaking to Tracy. And I could tell Tracy was as much in awe as I was!
At one point, wiht regard to the vent – she said “Tracy, it’s like running a marathon or a race”…. this was her analogy!!!?? Tracy started crying (…btw… she had not cried throughout this entire “meeting” – which ended up taking 1.5 hours!) Tracy mouthed the words “I so wanted to do the race”. Everyone was quiet.
At first I started crying, but I stopped myself and reached over to touch Tracy’s head and whispered in her ear. “You have a new race sister!” It’s called the Centurion Breathing Race! Use that same drive and mental capacity to win this race. I know it’s not the one you wanted to be doing, but it’s the one you’ve got to win!! We know you can do it.
In that moment, she looked up at the doctor and mouthed “do it now”. So, with us all standing there, they decreased her oxygen level and adjusted the settings so that in essence she was (with some pressure support) breathing on her own. We all waited.
I asked her “are you ok?”. Now, she needed the board. No longer able to mouth words because all of her energy and focus had to be on the breathing. We got out the board with the alphabet, and she spelled. “I’m scared”. The doctor asked “scared of what”? – her lips moved slightly of dying.
I could hear my Mom starting to sob. I quickly leaned over to her and said. Ok, seriously Trace they are NOT going to let you die! They are monitoring all the machines. The doctor interjected and told her about the alarms that would go off if her breathing was in trouble.
I asked the respiratory therapist if, when they made the adjustments could they please stick around to see how she was handling it from now on. Tracy also expressed that she wanted to see the oxygen monitor. Somehow if she could see the numbers – (Peep, volumes, etc – we’re learning what they all mean) ….she feels better. They agreed.
ON THE LIGHER SIDE: Ok, put the tissue away. Here’s the funny part of yesterday’s conversation. When talking about the repositioning and mishandling of her when being moved. She was desperate for me to spell out. “They need to be more organized”! and “They should have an agenda”. I laughed. Here’s Tracy running the show. The good news is that the nurses agreed to put up a daily schedule for Tracy on a white board so she could know what was happening when.
HAIR: What keeps me going is to know that my sister is still who she was. She’s a beautiful woman who takes incredibly good care of herself. She had me spell out. Please call my hairstylist and ask him to come in and do my colour. I love it!! We hope to make this happen this week.
BEDSIDE MANNER: You can teach and educate people about medical science, research and facts. You can teach and educate numbers, figures, stats and rates. You can teach and educate procedures, policies and practices. You CANNOT teach the ability to communicate with empathy, understanding and compassion. This,…. I’ve learned is an innate skill.
DR. ZOE UNGER: She is a resident in the CCU. Tracy values Zoe’s opinion and guidance. Tracy trusts Zoe and Zoe has taken the time to understand Tracy. Zoe is a young woman who is going to go far in her profession! Zoe was with me on the first night and has stayed with us ever since. She is Tracy’s new ‘friend’. She is to be commended. She is an exceptional doctor and human being. We all love Zoe.
We’ve created a Trust account for Tracy and her boys. To help, visit any CIBC branch and tell them you’d like to make a donation in Trust for Tracy Dort-Kyne to this account: #00002 / 60-47599.
WWW.TRACYDORTKYNE.COM: is under construction. We hope to have a link to make online donations by next week. In the meantime, go to the bank!
With love and gratitude,