It was a Bad, Bad Day today. It began with Corey’s swallow test. She did not handle the barium well at all. At one point she refused to swallow, she just wanted to spit everything out. The test did show some good swallows, however it also showed that she aspirated on one of the trials. This means that a small amount went towards the lungs not the stomach. She remains at high risk for aspiration but we still need to continue her trials. Our care plan is to administer extremely small bites of ice cream (smaller than an M&M) and only a few bites at a time, once a day. After the hospital we stopped at the grocery store so she could pick out her favorite flavors of ice cream.
When we arrived home Corey was exhausted. Corey had the taste of residual barium in her mouth and was livid. She’s been spitting all day and night trying to get the taste out. In addition, she’s complaining that her mouth is burning and her stomach hurt. She said she was hungry. We tried ice cream. Her anger was turning to rage because she wanted food. She tried to pull her feeding tube out several times today which causes more stomach pain. Her mind doesn’t realize her body isn’t ready yet.
The swallow study pushed her PT session to late this afternoon. That did not go well either. She was very anger at herself and her legs. She doesn’t understand how far she’s come and that all her strength and agility is coming back but it’s taking time. She wants to move her leg when it’s time to move her leg; not wait for the delayed response. She was furious. The session was cut short but not before she pushed through to walk the length of the kitchen (having a fit the entire time, but she did it!)
When Corey is angry she slaps her leg with the palm of her hand, makes a fist and pounds on the wheelchair arm and repeatedly hits the top of her head with her hand. Needless to say, we try to intercept each attack to protect her; which just makes her more upset. Unfortunately we don’t always catch the motion prior to impact; she has begun to bruise her arm and hand.
There have been many, many good moments to share with all of you. Then there are the moments that we deliberately don’t share but are a very real part of our daily routine. Today was a bad day. This is the part no one likes to read or face…not even us; but its all part of it. Today was a day we just have to remain calm, breath, validate Corey’s anger and then try to reassure her that it’s all coming back; it’s just slower than she’d like it to be.
At the end of a day like today, all my energy is depleted. The house is silent except for the usual night noises; the spin of the motor to Corey’s feeding pump, the sound of the heat pump turning on/off, Roxie snoring, Jade and Amelia purring and Corey’s occasional exhale signaling her falling into a deeper sleep. Tonight all that comes to mind is an old favorite quote;
Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow ~ Mary Anne Radmacher
Good night little voice, happy dreams. We will try again tomorrow, xoxo