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Posts Tagged ‘complex medical needs’

As a parent you are an advocate for your child. As a parent to a complex medical needs, or special needs child your advocacy is crucial, especially when they are very young and can not communicate. That is the most frightening time. You know that the decisions that you make will change and shape your child’s future. Why wouldn’t you want as much information as possible before making such life altering decisions. Any doctor who is offended by the notion that you would like another opinion is more than likely insecure with their own abilities. That is of course just my opinion, but having had so many doctors in my son’s very brief life, I have found that the really strong and knowledgeable doctors encourage the second opinion before it had even crossed my mind. More often than not, their outlook ends up the correct. It has also been my experience that the few doctors that have bared resentment end up being close, but not necessarily on target. My son’s tracheostomy is a great example of another look and the ultimate prognosis[…]

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This week has been one of the most stressful I have experienced in quite awhile. There was one issue after another spanning the spectrum. I’m not going into details, but one particular issue stood out this week that made me stop for a moment to think. I’d like to begin with sharing this quote.

“Learning to live in
the present moment is
part of the path of joy.”
-Sarah Ban Breathnach

Something that I realized this week is that I try to approach each day with that quote in mind. Having a son with a life-threatening disease which many of it’s patients never make it to adulthood can certainly be overwhelming. You never know when things will take a turn for the worse and what could be your final day. We all live with that to some degree, but when there is a diagnosed cloud looming overhead it makes it seem more realistic. I think many that share terminal diagnosis and life-threatening diseases ignore that cloud. They fight through the pain, suffering and illness and inspire many along the way. While my son can not speak and communicate that to me directly, his actions clearly define this attitude. As a parent I have embraced that as well. I do not dwell on the fact that his life expectancy is potentially shorter. That doesn’t mean that I do not think about it from time to time. I may even shed a few tears over it during those moments. One thing my wife and I decided was we would embrace each day as it’s own and see tomorrow as something to look forward to rather than dread. We take the time to relish our time as a family. While my son has spent half his life in a hospital, we have had some of our fondest memories as a family there. This week I had to spell out the grim reality to get a medical provider to understand my point. They were neglecting to remember the fact that my son’s disease carries with it certain avoidances that have been documented with research to be particularly harmful and potentially hasten the onset of certain issues. While I understood the point the provider was trying to make in respect to the challenges this particular constraint placed, I was equally disturbed that they continued to press the issue as if I was being an overprotective and unreasonable parent. I felt as though they were attempting to sway my stance on their favor by asking me to compromise my values towards my son’s care. This should never happen, but it does when people do not take the time to remember or understand and be open-minded. Maybe by living in the present and embracing today rather than the potential we were misunderstood. The embodiment of this ideal is not meant to make it any less serious or to pretend it does not exist.  However, if I choose to take the time to expose you to the reality it is not appropriate to make me feel as though I am the one in the wrong. As I tell many of my critics, “walk a mile in my shoes. I bet you won’t make it that far.”

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Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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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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