Sunday, February 10, 2013

I need a nap....

I have had a frustrating few days.
When I get tired and there is no down time or quiet, there comes a time when I feel like I might scream or punch someone.
Last night, I had to do everything I could to not punch an RT (respiratory therapist).
Now let me be clear, I wouldn't actually punch someone, but you know that feeling you have where you think "what if I did?" In an alternate life, could this happen?
I hate when I feel like that.
This has been a particularly frustrating stay. Lots of change. Lots of new people. Lots of explaining and out of routine.
Why is that so frustrating you say?
I hate change. I don't know why, but I do and it freaks me out and I am routine oriented and I like to know what is coming, especially when it comes to my son and his disease. Now, if you know anything about CF, you know it is anything but predictable, so you think I would have adjusted by now. Just can't do it. I think I am broken. I feel crazy and neurotic.
I think after I have been here a while and I feel things spiraling out of control because I have no control at all over CF, then I become extra controlling over other things and I get fixated. I get so frustrated that I have to lock myself in the bathroom and cry into a towel so Kaleb doesn't hear me. That helps a little.
I don't pretend to understand how to run a hospital or a department. But, I do think, that I could teach some valuable lessons to the medical world from a parents/patients perspective.
I get along with everyone here, I value that. I put time and energy in to relationships here, even when Kaleb is not sick, I come down to visit and bring treats and say thank you. This is part of our life, our family. We have a routine, we have a way of doing things. The staff and those here realize that this is more than just a stay, this is our life, and because of that, we do things differently than a one timer.
So when I have to report someone to their supervisor and stick up for my child and correct mistakes, it makes me feel yucky. I get sick to my stomach, heartburn and reflux commence and I get stressed.
I won't report someone just because they are annoying or I don't jive with their personality. I am careful and particular. I have been here for over 10 years with Kaleb and I honestly can only remember one other time I have had to report anyone.
But when medications are not right and mistakes are made that will impact or harm my child, mama bear comes out and I have to do something. I am his advocate. I am his protector. I do not have blind trust just because you have some letters after your name. I take pride in the fact that I know Kaleb's disease, I mean KNOW it. For myself. Based on my research and learning and life experience. I write everything down, I get orders straight from the doc and make sure that we stay consistent with our plan. I do not say this to be arrogant, but I know CF and especially my sons CF better than most of the people here, including docs.
So when I catch a mistake and ask for it to be corrected and I am treated condescendingly and I insist on checking and double checking and seeing the orders myself. When I don't just "take your word for it" because you took a course on being an RT and you keep telling me my kid is taking meds he isn't taking and giving me meds he isn't on, please don't be rude to me. It isn't about you and me, it is about my son and his safety.
So when I give grace the first few times but it keeps happening and you tried to give my child medication that is not prescribed and you aren't aware of the right names for the ones he is on, I have to say something. I am not rude, I am not mean, I just have to say something. I have to make sure that mistakes don't happen when it comes to my kid and I would like to keep it from happening to anyone else.
I pray that this is something that helps someone learn and grown and get better at their job.
I will have to accept the fact that I may be talked about or whispered about or complained about, but I have to not care because this is more than a disagreement, this is my child.
So it has been a frustrating few days. I care too much what people think sometimes and I have to weigh that with how to be the best mom, caretaker, and advocate I can be.
I choose when to say something and when to keep quiet. I work on my flexibility and being inconvenienced and not in control. I pray that I can continue to show God's light through everything, even yucky and frustrating situations like this because that is more important to me and I fear that being at risk.
There is so much more to CF than meets the eye. Chronic illness has so many layers and I pray I am up for the task and am doing a good job.
Because this job God gave me is important and I take it seriously and Kaleb means everything to me.


Debbie said...

I too have had to report someone. I didn't want to, but I had to.
Our visit in December, I thought I was going to have to report and RT, but luckily, I didnt. I bet it was the same one, for the same reasons.

It is so frustrating, because we are the ones there for our child 24 hours a day and know what they are on, even if it was just changed, because we are involved in our child's care and then they question whether or not we know what we are talking about because we are only the parent. We cant question whether or not they know what they are talking about because they went to school.

I too, go into the bathroom to cry so Chey wont know. People just dont understand, if they dont live it.

Prayers for you and for Kaleb.

Jennifer said...

I totally know! I always ask what med is being given. Many, many times I have had to correct/update the RTs. One time I got into it with someone insisting on drawing labs at 11:00 pm, that had been cancelled. I made her leave, check with his nurse, sure enough I was right. She just disappeared, no apology or anything. I wrote her up for sure. I feel bad for the patients who's parents are unable to be at their side 24/7.

Elena said...

Hello, my name is Elena and I am from Madrid,Spain. A few days ago reading the CF foundation page I knew about your marvellous family and about Kaleb and I started reading your blog. Now In this difficult days I want you to know that we are praying for you,for Kaleb and for all your family. We are too far but I Think prayers are very powerfull and it will be very nice if we pray for each other. I have twins whith CF, (DF508) they are six years old that´s why I understand you so much. I hope Kaleb will be OK soon. Sorry if my English is not very good.
Good bye and I wish you the best

Amy said...

I know exactly what you mean. It's something I learned very quickly a few months ago when we had our first hospital stay. YOU are the one who knows your child best and YOU have to be the one to speak up when something isn't right.

I'm sorry this stay is so hard for you. Keep your head up! Kaleb is very lucky to have you as his mom!

Kristi Bowers said...

Thank you! Are you on Facebook ?

Sandy Long said...

Totally agree, Kristi. We have had times when we had to report people, and completely break down. THe hospital breaks me down in similiar ways. THere are so many competent people but also so many that think they know your child and their occupation. It's such a draining experience working with people that think they control you. I hate the hospital and hate that it seems some like to "control" you because they feel you are at their mercy and your child is the guinea pig. There aren't many of these kind but when they exist in your child's hospital breaks you down. Keep fighting for your boy. YOu are an amazing mom that simply needs the best for him. If they don't get it- that's not for you to even need to explain. Hang in there!

Kristi Bowers said...

Thank you!