Posts Tagged ‘being strong advocate’

As it became more apparent today that our surgical admission is turning into a much more open-ended one, I found myself with a new concern other than just my son’s recovery from his latest surgery. Will he contract another infection or other issue? This is always on my mind during any contact with medical staff, and let’s face it, the hospital is the worst place in the world for a sick person. Especially when that individual is immune compromised. Ironic isn’t is? That irony ranks right up there with getting rest in a hospital. As I once said about the hospital culture; Want rest or to be left alone and they come one by one, but need something and not a soul can be found. Back to the topic now. Hospital infections and more importantly how we as parents and caregivers can help minimize the exposure, at least to your precious one. This article is not meant to bash the healthcare staff of hospitals, but rather raise awareness to parents to help advocate and potentially reduce the spread of these infections[….]

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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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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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Past Few Days

It has been a very exhausting and stressful few days. I have been battling my son’s colorectal doctors to take a look at some odd and concerning lumps on his colostomy stoma. We have been playing the photo email game for several days. Why i do not know, but they are simply refusing to bring him in to look at him despite his bone marrow doctor requesting fervently. Late yesterday we finally received an email simply stating that it was nothing to be concerned with and will be dealt with during the colostomy closure in the future. That is it, no mention of what they are or that there is nothing to watch out for in the mean time. Just live with them for the next several months. Seeing how this opinion was arrived via photos only the fact that the doctor will not commit to what they are is a little concerning and creates doubt. If you can not identify these by name how can you be so certain there is no cause for concern? Some of my son’s other physicians agree with us on that point.  We will just have to be vigilant and watch for changes. I believe I have commented to this effect before, I wonder if other parents have the same difficulties with advocating?

Thanks for reading my point of view,


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Today was one of those days that are exhausting from start to finish. Speech theory, then occupational therapy, and a meeting with our medical supply company. This was intermingled with a slew of phone calls, both being made and received. All in the name of advocating and providing for my son’s needs, mostly medically. It began last night finding a very hard nodule on my son’s colostomy stoma. While it doesn’t seem to be causing him much issue, at least clinically it is bothersome that this suddenly appeared. There are a few indicators it is annoying him some. The big problem is whenever there seems to be anything to do with his colostomy it turns into a finger pointing, excuse making, pass the buck, frustrating time. (more…)

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