I’m sitting at my kitchen table as I write this, listening to Kelly Clarkson Stronger CD. That is the soundtrack I am listening to as I type this post.
One week, I’ve been caring for my T-tube for a week now. It’s been rough. I didn’t have all the supplies that I needed. I complained a lot on my Facebook. I felt like a whinier and I hate feeling that way. When I was discharged from OHSU on November 23rd I was sent home with 2 suction catheters to get me by. It wasn’t enough. Low and behold the ENT doctors there did not write me the prescriptions I needed for all the T-tube care items in order to not have issues at home. I knew it was the holiday weekend, so I didn’t baulk too badly. I reused the catheters, which is a no no if you know anything about t-tube/trach care. I am having a hard time being understood on the phone, so I wrote my care coordinator and she received my email Monday morning. She called Dr. Anderson my primary ENT here in Vancouver and the one who didn’t do my last surgery. He was angry, he become my angry voice and advocator for me. I’m blessed that I have an awesome doctor like him on my team.
I had a hard time naming what I was feeling, finally in the middle of the night, of course, it finally came to me. I feel betrayed by the OHSU doctors. They lied to me about my primary doctor being on board with the T-tube. Yes, the T-tube is working well for me this time, but the manner in which they did it is not okay with me. This week I learned to live with anger and not to sin because I am angry. While waiting I received a survey from OHSU asking about my opinion of their service from my hospital stay. I’m hoping to be kind as I express my disappointment with Dr. Flint and his team. I am a firm believer that even if I have been hurt by someone that I have to be kind and respectful in telling someone that they hurt me. I think this is what Jesus was talking about when he said not to sin in anger. I believe I can tell the doctors they betrayed me and how I felt without being unkind and hurting with my words or actions. It is not easy, believe me. I have thoughts of hurting them like I have been hurt. But I am quickly reminded that even though they hurt me, they also were trying to help me breathe.
The T-tube is working. Yes, I have a dull ache in my chest where I can feel the tube going into. I am able to cap the T-tube and breathe and talk. I am still learning to listen to my body in regards to when the suctions and when to take the mucus medication. My wound from where they cut to insert the T-tube and where it comes out hurts, but it is still healing. Thank God for pain medications.
Here are things that I am learning:
- Preparation is everything. I have set up my bathroom counter for a T-tube care center for me. I have my suction machine, sterile water, and catheters all there ready for me. I set up a section with what I need to suction and clean my t-tube after each time. If I am to be successful with my t-tube I feel that I need to be mindful of what it means to take care of myself.
- I need small reminders that I am human. I bought myself a soft grey robe, one that feels good on my skin. I can touch and be reminded of the good things in my life.
- Not everything going on my life needs to be centered on my t-tube. I’m still able to learn, study Jesus, pray, watch movies, laugh, and just enjoy being alive. Small things are important to me.
I’m not perfect at this illness journey. I know that Jesus has me covered. I am not alone. This is the most important thing I am learning.
Please wait...