CHANGES...always so scarey
Posted by Tonni Brende on Wednesday, August 11, 2010
A bit ago we learned that our rehab doctors clinic hours were being cut back considerably and that we would have to choose another doctor. Stinks, but no biggy since the nurse is really our life line. We have chosen Dr Rinaldi, who is a doctor we saw years ago and we were impressed by the fact that he addressed Johnathan before us, as it should be.
Well, yeasterday I got an e-mail stating that our nurse is also leaving the department. NOW, I am freaking out! The rehab nurse is the one that handles EVERYTHING to do with the special needs part of my sons medical life; be it his baclofen pump adjustments, his PRN meds, his equipment and therapy scripts, EVERYTHING; complete trust and faith is palced in this nurse.
Johnathans chart is a mess. Over the 11 years of living here in the KC area, we have met numerous doctors that diagnose based on his CP diagnosis and not on true testing, and we have met even more "power trippin" nurses that think they know it all. I know I don't know it all. I know the medical field is truly a guessing game, and that when it comes to the severe and profound that can be even more guessing. But I also know I deal with Johnathan and his needs daily. I have been doing it for 11 years and have had waaay more crash courses than I have cared to have. I am willing to admit when I am wrong. I am willing to listen. But I also expect those that I deal with to act in the same manner. I have to trust that they have Johnathans best interests at heart as an individual. I know no one would ever mean to cause him harm; but I have had harm caused upon him from those that thought they knew it all. This is my 24/7, 7 days a week job priority, he is only their job once every 6 months to a year. He is not a norm and should never be treated as such. He is not everything his chart says he is and those that deal with helping in making his medical needs choices need to know that.
There are 2 other nurses in the rehab clinic. I have met them both once, so truly do not know either of them, so have no one within this clinic I trust to make choices based on Johanthans best interests and not their own. One of the nurses and I disagree with who started the hostility upon a visit. I felt I was met at the door with hostility, she says she was just asking questions. Questions never bother me; truly I encourage them, for that is how we get to know each other and learn more about Johnathans needs. Her "questions" were "why do you think he needs a pump increase"..because his tone is higher and it is harder to get his shirt on, basic question...then "how do you know you aren't going to have to come back and decrease the dose as last time"...I don't, I only know his tone has changed for the worse and something needs to be done and this is what we do for it....HELLO, bothered at this point...she asked why I was being hostile...I asked why she was asking stupid questions....needless to say, we got the increase, all was fine and on my way I went; sending an e-mail to my regular nurse on the event. I can't remember the ladies name, but one appointment and I will know which of the 2 she is, for attitudes like that are constant. I know I can be demanding, scatter-brained when trying to solve a new puzzle, but I do know the truthful facts behind my son and I have done a good job thus far. I refuse to be treated like an odiot. Save that for the parents that ARE still stuck on every word the docs say and are still learning they have a voice and this is their child.
Bottom line...I am freaking out...we have major surgery in St Louis coming up (no date yet, just some time in September). We are totally trusting of Dr Anderson and whatever team he chooses for us there. We are luckily staying in a rehab facility there after surgery so I will be well trained in what to expect and what Johanthans needs will be before we come back. I am devastated that I will be coming back to deal with people that do not know us and do not know what is truth and lies within Johantahns chart (only I am stupid enough to comb thru it). If any issues arrise I know I can call St Louis, but if emergent, I am just going to have to place my trust in God to send me someone open minded enough to listen to a lowly parent for the facts.
Other issues are just redoing the seating clinic appointment for new wheelchair and bath chair and luckily I have my DME, Doctor's Equipment, who knows us, coming for that so between Jason and I we can get what Johnathan needs. I already got my script for therapies for the year, so that also ia a no brainer. Pump increases and refills will be my only issue. I have the science on Johnathan with what is an okay % of pump increases. And refills, well, they get one shot, two maybe, but never 3.
Wait a minute...what am I stressing for....truly we got plenty of time to get to know these people and go elsewhere if need be. Anderson and his team got this surgery and its aftercare, so no need to feel rehab here needs to be involved. We have quite the recovery and plenty of down time coming. I already have a wheelchair picked out per a clinic visit, so not much arguement should be had there. Stander, if argued, I can always go back to oOrthotic & Prosthetic Lab in St Peters and Columbia is where Dr Emerson is if rehab don't work here.
Should have updated you all sooner... for this here helped my tears stop and showed me the craziness of my stress. Talking it thru always helps. Never knew you helped so much....Thank you all for keeping me on these updates...Thank you Lord for the op...
Well, yeasterday I got an e-mail stating that our nurse is also leaving the department. NOW, I am freaking out! The rehab nurse is the one that handles EVERYTHING to do with the special needs part of my sons medical life; be it his baclofen pump adjustments, his PRN meds, his equipment and therapy scripts, EVERYTHING; complete trust and faith is palced in this nurse.
Johnathans chart is a mess. Over the 11 years of living here in the KC area, we have met numerous doctors that diagnose based on his CP diagnosis and not on true testing, and we have met even more "power trippin" nurses that think they know it all. I know I don't know it all. I know the medical field is truly a guessing game, and that when it comes to the severe and profound that can be even more guessing. But I also know I deal with Johnathan and his needs daily. I have been doing it for 11 years and have had waaay more crash courses than I have cared to have. I am willing to admit when I am wrong. I am willing to listen. But I also expect those that I deal with to act in the same manner. I have to trust that they have Johnathans best interests at heart as an individual. I know no one would ever mean to cause him harm; but I have had harm caused upon him from those that thought they knew it all. This is my 24/7, 7 days a week job priority, he is only their job once every 6 months to a year. He is not a norm and should never be treated as such. He is not everything his chart says he is and those that deal with helping in making his medical needs choices need to know that.
There are 2 other nurses in the rehab clinic. I have met them both once, so truly do not know either of them, so have no one within this clinic I trust to make choices based on Johanthans best interests and not their own. One of the nurses and I disagree with who started the hostility upon a visit. I felt I was met at the door with hostility, she says she was just asking questions. Questions never bother me; truly I encourage them, for that is how we get to know each other and learn more about Johnathans needs. Her "questions" were "why do you think he needs a pump increase"..because his tone is higher and it is harder to get his shirt on, basic question...then "how do you know you aren't going to have to come back and decrease the dose as last time"...I don't, I only know his tone has changed for the worse and something needs to be done and this is what we do for it....HELLO, bothered at this point...she asked why I was being hostile...I asked why she was asking stupid questions....needless to say, we got the increase, all was fine and on my way I went; sending an e-mail to my regular nurse on the event. I can't remember the ladies name, but one appointment and I will know which of the 2 she is, for attitudes like that are constant. I know I can be demanding, scatter-brained when trying to solve a new puzzle, but I do know the truthful facts behind my son and I have done a good job thus far. I refuse to be treated like an odiot. Save that for the parents that ARE still stuck on every word the docs say and are still learning they have a voice and this is their child.
Bottom line...I am freaking out...we have major surgery in St Louis coming up (no date yet, just some time in September). We are totally trusting of Dr Anderson and whatever team he chooses for us there. We are luckily staying in a rehab facility there after surgery so I will be well trained in what to expect and what Johanthans needs will be before we come back. I am devastated that I will be coming back to deal with people that do not know us and do not know what is truth and lies within Johantahns chart (only I am stupid enough to comb thru it). If any issues arrise I know I can call St Louis, but if emergent, I am just going to have to place my trust in God to send me someone open minded enough to listen to a lowly parent for the facts.
Other issues are just redoing the seating clinic appointment for new wheelchair and bath chair and luckily I have my DME, Doctor's Equipment, who knows us, coming for that so between Jason and I we can get what Johnathan needs. I already got my script for therapies for the year, so that also ia a no brainer. Pump increases and refills will be my only issue. I have the science on Johnathan with what is an okay % of pump increases. And refills, well, they get one shot, two maybe, but never 3.
Wait a minute...what am I stressing for....truly we got plenty of time to get to know these people and go elsewhere if need be. Anderson and his team got this surgery and its aftercare, so no need to feel rehab here needs to be involved. We have quite the recovery and plenty of down time coming. I already have a wheelchair picked out per a clinic visit, so not much arguement should be had there. Stander, if argued, I can always go back to oOrthotic & Prosthetic Lab in St Peters and Columbia is where Dr Emerson is if rehab don't work here.
Should have updated you all sooner... for this here helped my tears stop and showed me the craziness of my stress. Talking it thru always helps. Never knew you helped so much....Thank you all for keeping me on these updates...Thank you Lord for the op...
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