It's really hard to talk about sometimes. I wonder if there isn't more I should be doing? I have finally had to admit (to myself) that G is not going to be ready for mainstream school next fall. Not only is he super small, he just doesn't understand things other kids do. I am so tired of fighting teachers and doctors who's response is mostly "he'll be fine". You really cannot expect my child to wash his hands and get in a line without a reminder. He can't color or write his name. He doesn't even want to try because his little flexible hands can't maneuver pens and such. Then there is the whole can't smell issue...how do we cope with this? How do we teach him that other people can smell things and he never will? How do we teach other people that he has no idea what a flower smells like, or home made cookies? How did he bond to us as an infant without smelling? Did it happen later? Was he 1 or 2? Did he fall and hit his head to cause this? Was he born that way? It's really hard not to just cry for him. How can I fix this? I am trying so hard to be strong and fix everything that comes up to make life normal for him but how can I make this better? Could be worse, it can always be worse. What if there is a fire? He can't smell the smoke. Maybe we should avoid a home with gas in it, he could never spot a gas leak. How as a mom can I make this better?
He got sick over the weekend. Not sick sick just noticed he lost his appetite, well what he has of one. He went almost 24 hours without urinating. After a trip to urgent care and a rash and ER visit later we have nothing. I am hoping it was indeed nothing. Still can't get him to eat much. Do I sit on him just to shove a few bites of turkey in his mouth? I hate when people judge that you are a horrible parent based on what you feed your kid. I find it awesome you can get your kid to eat some tofu and organic juice. Mine won't even drink juice or eat vegetables. Of course now knowing he has anosmia and can't smell anything makes more sense as to why he won't eat things that are pretty normal for even a picky child. But again, how do I fix this? This could be another reason for FTT but why? Why? I just want some answers. I just want a reason. Something to point us in the right direction, a reason that will allow him some extra attention in school. I worry now even more. But I am just happy that he is such an awesome kid. Even when he should be feeling pain and discomfort he will smile and appreciate the music in his heart. I just want to make things easier for him. Just not sure how...
Showing posts with label fail. Show all posts
Showing posts with label fail. Show all posts
Monday, November 28, 2011
Tuesday, October 11, 2011
Medical Staff: please don't play telephone, it's a horrible game.
At my wits end with medical people. Please, please listen to the parents. At least acknowledge that we know our children. After all we do live with them. I am so frustrated with no explanations...just do this and call us later. Really? Yeah, ok and I should trust you why?
I don't know what to do but I regret this facility and the decision to come here.
They are so focused on the constipation and not WHAT is making him constipated. I feel like no matter what I say/explain or otherwise they think this is a new problem and ugh, whatever. I thought of writing a letter to them since the person in charge keeps sending messages through other nurses.
Dear ARNP,
We came to your facility looking for answers to a life long problem our child has. Since birth he has been constipated. After 2 years of making appointments, visiting various urgent care clinics multiple, more than 15 different times in less than 2 years asking what is wrong only to get blown off, they did an x-ray in the middle of the night at an ER. At all these doctor visits, pediatric specialists, urgent care doctors and nurses they all felt his stomach and told us there is no way he was constipated. We just worried too much, or thinking about it too much. Well finally we had an x-ray that said we were right ALL along and oh yeah we don't know what to do cause its so bad. So after an ambulance ride to Children's we were given instructions for oral clean out since an enema would rip his intestines apart. After a month or so of this to no avail and he was suffering stomach pain and vomiting we went to the ER again. This time I was blown off stating he is simply 2 and having tantrums. Tantrums from a dead sleep? He does not, or did not ever have tantrums. I know my child. After telling this doctor I don't accept her answer she conceded to do another x-ray to prove that he is all better from the oral clean out. She ate her words and was apologetic when she saw how impacted he was. Thankfully the wonderful Neurodevelopmental staff stepped in and rescued him by having him admitted for a clean-out through the stomach. 24 hours of intense clean out and the x-ray after showed he was finally cleaned. We were instructed to give him Mirilax every day and told from now on he will be fine.
That was 2 years ago. He still is not fine.
Our visit to you was because he isn't getting better and a teacher at his school spoke highly of the department. We were hoping for answers. We were shocked to find out he is still highly impacted. For a child that eats hardly anything, just enough to survive this cannot be good. We totally understand and complied with your instructions. After numourous back and forth calls with your people and a second xray 2 weeks later we are still almost where we were. If you have a plan it would be nice to know that. How long can he go with poop that runs like urine? When I brought up to your people that he is barely eating you say its because hes constipated...but when I say he ate more before we started this treatment I am treated like I don't know my own child. When I say he wont drink something, I am not saying that just to hear myself talk. When I say that its liquid and there is nothing solid left, please hear me. I know my child. And whey your people say that you will be able to "feel his abdomen" to see if he is still constipated I have 20 other people that said that too in his first 2 years of life. Good luck with that. I just want answers or at least someone to throw out some things, do some more tests. This has now gone on for 4 years, it is not a new issue. Please hear me when I tell you this. I haven't gone to medical school but one thing I do know, is that I KNOW MY CHILD.
Listen to parents.
Sincerely,
Me
I don't know what to do but I regret this facility and the decision to come here.
They are so focused on the constipation and not WHAT is making him constipated. I feel like no matter what I say/explain or otherwise they think this is a new problem and ugh, whatever. I thought of writing a letter to them since the person in charge keeps sending messages through other nurses.
Dear ARNP,
We came to your facility looking for answers to a life long problem our child has. Since birth he has been constipated. After 2 years of making appointments, visiting various urgent care clinics multiple, more than 15 different times in less than 2 years asking what is wrong only to get blown off, they did an x-ray in the middle of the night at an ER. At all these doctor visits, pediatric specialists, urgent care doctors and nurses they all felt his stomach and told us there is no way he was constipated. We just worried too much, or thinking about it too much. Well finally we had an x-ray that said we were right ALL along and oh yeah we don't know what to do cause its so bad. So after an ambulance ride to Children's we were given instructions for oral clean out since an enema would rip his intestines apart. After a month or so of this to no avail and he was suffering stomach pain and vomiting we went to the ER again. This time I was blown off stating he is simply 2 and having tantrums. Tantrums from a dead sleep? He does not, or did not ever have tantrums. I know my child. After telling this doctor I don't accept her answer she conceded to do another x-ray to prove that he is all better from the oral clean out. She ate her words and was apologetic when she saw how impacted he was. Thankfully the wonderful Neurodevelopmental staff stepped in and rescued him by having him admitted for a clean-out through the stomach. 24 hours of intense clean out and the x-ray after showed he was finally cleaned. We were instructed to give him Mirilax every day and told from now on he will be fine.
That was 2 years ago. He still is not fine.
Our visit to you was because he isn't getting better and a teacher at his school spoke highly of the department. We were hoping for answers. We were shocked to find out he is still highly impacted. For a child that eats hardly anything, just enough to survive this cannot be good. We totally understand and complied with your instructions. After numourous back and forth calls with your people and a second xray 2 weeks later we are still almost where we were. If you have a plan it would be nice to know that. How long can he go with poop that runs like urine? When I brought up to your people that he is barely eating you say its because hes constipated...but when I say he ate more before we started this treatment I am treated like I don't know my own child. When I say he wont drink something, I am not saying that just to hear myself talk. When I say that its liquid and there is nothing solid left, please hear me. I know my child. And whey your people say that you will be able to "feel his abdomen" to see if he is still constipated I have 20 other people that said that too in his first 2 years of life. Good luck with that. I just want answers or at least someone to throw out some things, do some more tests. This has now gone on for 4 years, it is not a new issue. Please hear me when I tell you this. I haven't gone to medical school but one thing I do know, is that I KNOW MY CHILD.
Listen to parents.
Sincerely,
Me
Wednesday, August 31, 2011
Wordpress: Fail
I attempted to make the switch to Wordpress and I just can't figure it out, or really have the time too. The box to type the blog in doesn't look right. So here I am, back to my good old reliable blog that I neglect far too often. If its not broke, don't fix it.
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