Hi Everyone,
I left for work before Corey was awake this morning. In the last year there have been moments that remind me of when I was a “new” mom. I find that I am reliving many of the ‘new mom’ emotions, always experimenting with trial and error techniques and naturally feel joy in seeing her firsts.
I also find myself worried when I leave. I go through the check list of contact numbers as well as my daily itinerary of sales calls with the nurses just as I used to with the babysitters. These details are necessary to help my peace of mind as I go to work knowing I can be reached; my cell phone is always at my side. I have to admit I am struggling with mild post traumatic stress disorder when it comes to the thought of not being available for the next phone call. I am also physically affected when any phone rings. It will only be another week or so before FMLA will go into effect and I can begin to work through some of my own residual fears.
Our nurse reported that Corey had a good day. She had two sessions of PT today. The first was with Gillian. Corey independently sat on the edge of the matte for a full 3 minutes; a new record. She also stood using the walker/platform for a full 3 minutes. This afternoon, Corey stood in the new standing frame with Jen for 6.5 minutes! Another new record; 9 1/2 minutes of standing today!! And you thought I was kidding Corey about her athletic training in going for the Gold…she’s tripled her time best time.
This evening was quiet. After the activity of the day it is exactly what I expected. Corey enjoyed resting but was VERY vocal. She was Chatty Cathy for almost 45 minutes. This is great but it also increases her mouth pain and volume of saliva.
Corey can not be left alone. Although she’s been improving, she still has serious health concerns that need constant monitoring. If we are not sitting at Corey’s side, she is being watched from the Kitchen table approximately 10 feet away from her. Corey’s new bedroom is our old Family room. We used to step down from the kitchen to the family room. We built a ramp to replace the step as well as a ½ wall enclosing the ramp and separating the family room from the kitchen. The table sits at the wall. Corey’s bed is positioned so that she has full view of the bedroom and kitchen and we have an unobstructed view of her.
One of her major health concerns is aspiration. That is when fluid or food goes into Corey’s lungs instead of down the esophagus and into the stomach. Corey is still being fed her nutrition, medications and daily water for hydration using her feeding tube. We take the necessary precautions to prevent aspiration; such as keeping her elevated at 30 degrees at all times. However, every once in a while Corey will choke on something; usually it’s her reflux fluids or saliva. She typically tries to swallow and work through it but sometimes it quickly escalates to chocking, gasping for a breath and coughing/vomiting to clear her airway. Tonight we had two of these episodes.
It’s hard to describe how we stay in Corey’s presence remaining calm but always cautious. We’re not hovering over her yet we never keep our eyes off of her for a minute. There are times we are sitting next to her, looking directly at her and out of no where she will begin to choke and fight for a breath. When these episodes happen Corey’s eyes are filled with fear and panic as she can’t speak or breathe. It’s critical that we remain calm, sit her straight up, ask her to lower her chin to her chest (this helps her swallow and clear the airway) and talk her though the directions to take deep slow breaths. Once the episode passes, she is exhausted but shows relief. We listen to her lungs to make sure we don’t “hear” any fluid. I’m learning what the sounds are but our night nurse confirmed she didn’t hear fluid, her chest/lungs sounded clear. We will watch Corey over the next few days to make sure her temperature stays consistent and she doesn’t become congested. Aspiration can quickly and quietly move into pneumonia. After the second episode Corey became clingy, she wanted to be held for the rest of the night until she fell asleep…that’s never a problem to accommodate!
These moments are frightening but “normal” for us at this time. It’s not to say that it’s forever; we hope as she improves and begins to swallow more consistently and begin to eat that she will gain control to prevent these episodes. I was sharing with someone today that I expect Corey to have a full recovery; however, I’m preparing to take care of her for the rest of her life. Although we’re looking towards the future we truly stay in today. Anything can happen within that 24 hour period that can change the course of our direction making all those preparations a moot point. It’s a challenge and hard work to stay present.
After the first episode, we were trying to lighten the mood. Corey and I have a running joke that all she has to do is snap her fingers and I come running. I was teasing Corey, ‘if you wanted me Corey, you know what you have to do’…She raised her right hand, laughed, snapped her fingers and pointed her finger at me! Yes…she has me wrapped!
Corey you had a really good day despite the episodes you had tonight. I saw how frightened you were but you know that you are never alone. It takes effort to move forward through the setbacks and disappointments. It takes courage and determination. Fortunately, you are filled with courage and determination. You may feel some fear but courage is not the lack of fear. Courage is the ability to feel your fear, to listen to what it has to say, to allow it to prepare you, and to move forward. You did that today. You do that everyday! I’m so proud of you, xoxo