Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 - It must feel awful to be so out-of-control of your baby's care. For them to not call you is unforgivable. I hope you are able to calm yourself, gather your strength, and face whatever comes today. I'll be sending positive thoughts to all of you. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi , When my son transferred to a different hospital, he had respiratory distress and had to be intubated that night (he had been extubated for over a month at the time). We found out about it the same night, but it wasn't until he was stabilized and back in the NICU (when he was transferred, he was put out " on the floor, " which probably should have never happened!). We were scared because it was a new place, and we beat ourselves up about not spending the night at his bedside (we were staying at Mc House a few blocks away)...but being there at that moment wouldn't have changed anything. The hospital should have called you, and this is a great opportunity to make your wishes known to the staff. Hugs to you and to JD--hope he is feeling better. (mom to Evan 8 mos) erin32573@... wrote: Monday evening JD was transferred to Children's Hospital. They had a bed available for him. Yesterday I met with the Nero-surgeon regarding the CT Scan that was done on his head. There is no need for a shunt at this moment. She wants to see JD in three months and have another comparison. That is the good news. Every night I usually call to check on him. Last night I didn't get to do that because I had Olivia by myself and need to get things ready for Wednesday. My plans are to spend the night with JD Wednesday night before his surgery. I called this morning and found out the JD went to Respiratory Distress last night and WE WERE NOT CALLED. I feel like I can scream right now, I think I have cried so many tears right now. I hate that my son is going through all of this and I am so frustrated right now I don't know what to do. So right now I don't even know if or when he is going to have surgery. Hopefully later I will know more. -very very upset mommy right now Bowdoin Special Education Vanston Middle School x4809 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi , When my son transferred to a different hospital, he had respiratory distress and had to be intubated that night (he had been extubated for over a month at the time). We found out about it the same night, but it wasn't until he was stabilized and back in the NICU (when he was transferred, he was put out " on the floor, " which probably should have never happened!). We were scared because it was a new place, and we beat ourselves up about not spending the night at his bedside (we were staying at Mc House a few blocks away)...but being there at that moment wouldn't have changed anything. The hospital should have called you, and this is a great opportunity to make your wishes known to the staff. Hugs to you and to JD--hope he is feeling better. (mom to Evan 8 mos) erin32573@... wrote: Monday evening JD was transferred to Children's Hospital. They had a bed available for him. Yesterday I met with the Nero-surgeon regarding the CT Scan that was done on his head. There is no need for a shunt at this moment. She wants to see JD in three months and have another comparison. That is the good news. Every night I usually call to check on him. Last night I didn't get to do that because I had Olivia by myself and need to get things ready for Wednesday. My plans are to spend the night with JD Wednesday night before his surgery. I called this morning and found out the JD went to Respiratory Distress last night and WE WERE NOT CALLED. I feel like I can scream right now, I think I have cried so many tears right now. I hate that my son is going through all of this and I am so frustrated right now I don't know what to do. So right now I don't even know if or when he is going to have surgery. Hopefully later I will know more. -very very upset mommy right now Bowdoin Special Education Vanston Middle School x4809 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi , When my son transferred to a different hospital, he had respiratory distress and had to be intubated that night (he had been extubated for over a month at the time). We found out about it the same night, but it wasn't until he was stabilized and back in the NICU (when he was transferred, he was put out " on the floor, " which probably should have never happened!). We were scared because it was a new place, and we beat ourselves up about not spending the night at his bedside (we were staying at Mc House a few blocks away)...but being there at that moment wouldn't have changed anything. The hospital should have called you, and this is a great opportunity to make your wishes known to the staff. Hugs to you and to JD--hope he is feeling better. (mom to Evan 8 mos) erin32573@... wrote: Monday evening JD was transferred to Children's Hospital. They had a bed available for him. Yesterday I met with the Nero-surgeon regarding the CT Scan that was done on his head. There is no need for a shunt at this moment. She wants to see JD in three months and have another comparison. That is the good news. Every night I usually call to check on him. Last night I didn't get to do that because I had Olivia by myself and need to get things ready for Wednesday. My plans are to spend the night with JD Wednesday night before his surgery. I called this morning and found out the JD went to Respiratory Distress last night and WE WERE NOT CALLED. I feel like I can scream right now, I think I have cried so many tears right now. I hate that my son is going through all of this and I am so frustrated right now I don't know what to do. So right now I don't even know if or when he is going to have surgery. Hopefully later I will know more. -very very upset mommy right now Bowdoin Special Education Vanston Middle School x4809 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 You know, we've had the issue of not being called from day one: hospital (actually they were all fairly good), the school system, even one of the Perkins' nurses (now gone) often failed to phone when had a problem, and certainly in her first adult living situation. I've never figured out how to handle this so have no answers other than that you must stress with everyone over the years to come that you MUST be contacted about anything. It won't always do the trick, but you'll at least be successful some of the time. Know that we're all thinking of you. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 You know, we've had the issue of not being called from day one: hospital (actually they were all fairly good), the school system, even one of the Perkins' nurses (now gone) often failed to phone when had a problem, and certainly in her first adult living situation. I've never figured out how to handle this so have no answers other than that you must stress with everyone over the years to come that you MUST be contacted about anything. It won't always do the trick, but you'll at least be successful some of the time. Know that we're all thinking of you. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 and wat if hed died and they hadnt call u they must call you even if they get another nurse to call not the one that has him hugs ellen > > You know, we've had the issue of not being called from day one: hospital > (actually they were all fairly good), the school system, even one of the > Perkins' nurses (now gone) often failed to phone when had a > problem, and certainly in her first adult living situation. I've never > figured > out how to handle this so have no answers other than that you must > stress with everyone over the years to come that you MUST be contacted > about anything. It won't always do the trick, but you'll at least be > successful some of the time. > Know that we're all thinking of you. Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 and wat if hed died and they hadnt call u they must call you even if they get another nurse to call not the one that has him hugs ellen > > You know, we've had the issue of not being called from day one: hospital > (actually they were all fairly good), the school system, even one of the > Perkins' nurses (now gone) often failed to phone when had a > problem, and certainly in her first adult living situation. I've never > figured > out how to handle this so have no answers other than that you must > stress with everyone over the years to come that you MUST be contacted > about anything. It won't always do the trick, but you'll at least be > successful some of the time. > Know that we're all thinking of you. Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Uh...I'm not sure that's the best example to give her. > >Reply-To: CHARGE >To: CHARGE >Subject: Re: upset news >Date: Thu, 23 Mar 2006 16:46:19 +1100 > >and wat if hed died and they hadnt call u they must call you even if they >get another nurse to call not the one that has him hugs ellen > > > > > > You know, we've had the issue of not being called from day one: hospital > > (actually they were all fairly good), the school system, even one of the > > Perkins' nurses (now gone) often failed to phone when had a > > problem, and certainly in her first adult living situation. I've never > > figured > > out how to handle this so have no answers other than that you must > > stress with everyone over the years to come that you MUST be contacted > > about anything. It won't always do the trick, but you'll at least be > > successful some of the time. > > Know that we're all thinking of you. Martha > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Uh...I'm not sure that's the best example to give her. > >Reply-To: CHARGE >To: CHARGE >Subject: Re: upset news >Date: Thu, 23 Mar 2006 16:46:19 +1100 > >and wat if hed died and they hadnt call u they must call you even if they >get another nurse to call not the one that has him hugs ellen > > > > > > You know, we've had the issue of not being called from day one: hospital > > (actually they were all fairly good), the school system, even one of the > > Perkins' nurses (now gone) often failed to phone when had a > > problem, and certainly in her first adult living situation. I've never > > figured > > out how to handle this so have no answers other than that you must > > stress with everyone over the years to come that you MUST be contacted > > about anything. It won't always do the trick, but you'll at least be > > successful some of the time. > > Know that we're all thinking of you. Martha > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Okay, I'm feeling bad cause I sounded like a git here. I'm sorry. > > > > > > You know, we've had the issue of not being called from day one: hospital > > > (actually they were all fairly good), the school system, even one of the > > > Perkins' nurses (now gone) often failed to phone when had a > > > problem, and certainly in her first adult living situation. I've never > > > figured > > > out how to handle this so have no answers other than that you must > > > stress with everyone over the years to come that you MUST be contacted > > > about anything. It won't always do the trick, but you'll at least be > > > successful some of the time. > > > Know that we're all thinking of you. Martha > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Okay, I'm feeling bad cause I sounded like a git here. I'm sorry. > > > > > > You know, we've had the issue of not being called from day one: hospital > > > (actually they were all fairly good), the school system, even one of the > > > Perkins' nurses (now gone) often failed to phone when had a > > > problem, and certainly in her first adult living situation. I've never > > > figured > > > out how to handle this so have no answers other than that you must > > > stress with everyone over the years to come that you MUST be contacted > > > about anything. It won't always do the trick, but you'll at least be > > > successful some of the time. > > > Know that we're all thinking of you. Martha > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 im a tactless git > > Okay, I'm feeling bad cause I sounded like a git here. I'm sorry. > > > > > > > > > > > > You know, we've had the issue of not being called from day > one: hospital > > > > (actually they were all fairly good), the school system, even > one of the > > > > Perkins' nurses (now gone) often failed to phone when > had a > > > > problem, and certainly in her first adult living situation. > I've never > > > > figured > > > > out how to handle this so have no answers other than that you > must > > > > stress with everyone over the years to come that you MUST be > contacted > > > > about anything. It won't always do the trick, but you'll at > least be > > > > successful some of the time. > > > > Know that we're all thinking of you. Martha > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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