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difficult child update
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<blockquote data-quote="susiestar" data-source="post: 400435" data-attributes="member: 1233"><p>First, LOTS of hugs. It must have been terribly hard to go through getting the tube in - almost makes you wonder if they could have sedated her (for YOUR benefit, if not her own). </p><p> </p><p>I know exactly how scary the heart stuff is. She truly has beaten her heart up with this problem, and I am glad the docs here are keeping a very close eye on her. At one point a doctor did an EKG wrong on Jess and gave us a potentially devastating diagnosis of a heart disease that could kill her at any moment with-o warning - then sent us HOME with NO way to help or treat it and a FIVE MONTH wait to see a pediatrician cardiologist! It is why she got a cell phone at age 12 - so that if she was at school she had a chance of dialing 911. So I truly DO know your terror and worry right now. She is young and with help this will heal. </p><p> </p><p>They are right about a tdocs, even if it drives you crazy. Ask the hospital if they have a family therapist that you can see. in my opinion this should be a part of difficult child's therapy because it is the aftermath of living with her and getting her through this.</p><p> </p><p>Please do NOT underestimate what you have done the last months - you kept your child ALIVE through a very life threatening illness and you found a place that can and will help her. That is HUGE and INCREDIBLE! Like all heros who do amazing feats, you are worse for wear at the other end of the part where you do most of it alone. So yeah, you now need some help. It was terrifying and awful and painful and isn't over. It is just that now you have help. </p><p> </p><p>When you can, leave the hospital. You know difficult child is going to protest, that is part of the illness. You KNOW she is safe and being cared for. Learning some independence at her age is vital, and so is learning that Mommy is actually a person with wants/needs/etc of her very own that have nothing to do with her. Taking time to care for YOU now that she has other adults to care for her is going to be vital to HER recovery every bit as much as hers. PLEASE see a therapist and also do some things for YOU. Heck, ask the staff if you can get a massage somewhere - and go do it! </p><p> </p><p>The updates are really appreciated, so thank you. I hope that this trip is every bit as helpful as difficult child needs and that you are able to deal with the feeding issues as well as find medications that will really help her. You are doing an awesome job - so reward yourself and be nice to yourself.</p><p> </p><p>(((((hugs)))))</p></blockquote><p></p>
[QUOTE="susiestar, post: 400435, member: 1233"] First, LOTS of hugs. It must have been terribly hard to go through getting the tube in - almost makes you wonder if they could have sedated her (for YOUR benefit, if not her own). I know exactly how scary the heart stuff is. She truly has beaten her heart up with this problem, and I am glad the docs here are keeping a very close eye on her. At one point a doctor did an EKG wrong on Jess and gave us a potentially devastating diagnosis of a heart disease that could kill her at any moment with-o warning - then sent us HOME with NO way to help or treat it and a FIVE MONTH wait to see a pediatrician cardiologist! It is why she got a cell phone at age 12 - so that if she was at school she had a chance of dialing 911. So I truly DO know your terror and worry right now. She is young and with help this will heal. They are right about a tdocs, even if it drives you crazy. Ask the hospital if they have a family therapist that you can see. in my opinion this should be a part of difficult child's therapy because it is the aftermath of living with her and getting her through this. Please do NOT underestimate what you have done the last months - you kept your child ALIVE through a very life threatening illness and you found a place that can and will help her. That is HUGE and INCREDIBLE! Like all heros who do amazing feats, you are worse for wear at the other end of the part where you do most of it alone. So yeah, you now need some help. It was terrifying and awful and painful and isn't over. It is just that now you have help. When you can, leave the hospital. You know difficult child is going to protest, that is part of the illness. You KNOW she is safe and being cared for. Learning some independence at her age is vital, and so is learning that Mommy is actually a person with wants/needs/etc of her very own that have nothing to do with her. Taking time to care for YOU now that she has other adults to care for her is going to be vital to HER recovery every bit as much as hers. PLEASE see a therapist and also do some things for YOU. Heck, ask the staff if you can get a massage somewhere - and go do it! The updates are really appreciated, so thank you. I hope that this trip is every bit as helpful as difficult child needs and that you are able to deal with the feeding issues as well as find medications that will really help her. You are doing an awesome job - so reward yourself and be nice to yourself. (((((hugs))))) [/QUOTE]
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