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Posts Tagged ‘Frustration’

I knew this week was going to be busy, but it turned out to be insane. I promise I’m not abandoning everyone and am very grateful for all that read. The past few weeks have just been so intense with the appointments and meetings.  I do not know what I was thinking when I scheduled these things. It must have been how much can I cram into a week.

I am a little frustrated about my son’s hearing right now. I know I haven’t written much about it yet, it is a touchy subject for me due to the way it has been treated, nonchalantly. This week however, brought on new concerns that rub me the wrong way. This week during our Aural Rehab Therapy she brought up in question the settings for his BAHA. She wants us to set-up an appointment with the audiologist that is now doing the BAHA cases. Specifically she wants him to test my son in the booth and address that the settings for this are indeed the right ones. I became quite upset over this. They are now suggesting something we brought up multiple times to multiple people and were always dismissed as that not being a potential problem. Now it is? The inconsistency is annoying me to the core. The initial audiologist that did his settings was very surly about our questioning if the settings were correct when there was no response.  She even put my son’s speech therapist in her place when she approached her telling her she needed to learn her role and stick to it.THE NERVE of that woman! Thankfully she is gone, but it possible now that her attitude toward my son and her lack of listening to concern maybe at the fore-front of a serious issue. If the settings indeed are incorrect, and have been this whole time, she would be responsible for delaying my son’s progress by 6 more months. Not to mention it took 18 months to even get aided in the first place. Sometimes I feel as though we attract all the riff-raff  in our realm. We will have to see where this takes us, but it is really striking a nerve with me at the moment. So is it a BAHA settings problem or a Central Hearing loss as they suspect? We will see soon I hope. Hope everyone has a safe and happy Labor Day Weekend.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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I have come to realize that as a father to a complex medical needs child that my life is normal. Some that I say this to look at me as if I have three heads, but when you think about it, normal is different for each of us. It is relative to the lifestyle and routines we lead in our daily lives. I remember my son’s physical therapist asking me one time how my wife and I handled everything. My son was the most complex patient she had work with. I laughed as I shook my head in a positive nod and said, ” this is what I do. I have become accustom to this and the things we must do for him medically. When your child has a running nose you help them blow it, I suction my son’s trach tube. You worry about tripping over all the kids toys I am concerned with not tripping on his tubes and wires. You change a dirty diaper, I change a colostomy bag, to me that is all normal now.” I went on to also say, “If you were to ask me to watch a “normal” child my son’s age I bet by the end of the night I’d be screaming for my medically complex child back.” I don’t think I would even begin to know how to care for a child that is not like my son. Funny how that works out isn’t it?

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After missing the past few days our nurse returned today. I sat her down and told her that 4 call outs in 7 weeks was not going to be accepted, especially when I lost a job interview opportunity on one of those days. We would not ever travel down the road of tolerance like we did with our last nurse. Obviously the agency is not keeping tabs or they would have said something. The fact that the agency did not call me on Monday either to inform me our nurse was not coming in was another issue. I also had to broach the subject about some things she had said and ways she has been acting that is causing some concern for us. She has been making comments the past few weeks about being “off and not quite feeling right.” She has been vomiting at home and nauseous here. Her blood sugar has gotten low to the point she was dosing off in the middle of a therapy session. These things were not making us feel very comfortable with leaving her alone with our son. (more…)

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Frustration Overload

Yesterday I was simply too frustrated and angry to write. I knew it would turn into a rant and while I am not against that I just did not want to expose this young blog to that. In a nutshell what got me started was our new day nurse calling out. The frustration was amplified by the nursing agency’s incompetent way of not bothering to notify me that my nurse would be out. It took me calling, some confusion by the person that answered the phone and a return phone call 45 minutes after the shift was to begin to learn of her absence. Today was the same, another call out five minutes after the shift began. That makes 4 call outs in 7 weeks which after our previous nurse that missed 50 days in eight months is something we refuse to accept. One of those recent call outs cost me a job interview. That in itself was a barn burner. It just simply amazes me that we can not find a nurse that has any commitment or work ethic what so ever. My wife has not even missed 4 days from her job due to our son, who has spent half his life in a hospital. Her position like a nurse puts someone else out when she misses, so like a responsible employee we schedule and juggle around her ever changing schedule. Is it easy, not at all. It just infuriates me that the agency allows them to do this. They have to, they are desperate for nurses. Which is odd because nurses around here can’t find jobs. So they are choosing other avenues outside of nursing rather than do home care. That is fine, but when the hospitals start hiring again do you think they are going to hire a nurse that worked retail or as an administrative assistant, in a factory, or where ever for a year or more without practicing? I know I wouldn’t. Their skill sets would be so rusty and more of a liability issue. So it makes no sense to me. That is enough on that, I do not want it to progress any further. Hopefully I will feel like writing more later.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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