Post by myangelamanda on Jun 27, 2012 15:09:53 GMT -5
Hi Max's mom. I read all about your Max and just felt compelled to reach out to you and sadly welcome you here.
My name is Michele and I've been a member here for 5 years. My daughter died in October of 2004 in such a similar circumstance as your sweet Max. She was 8 1/2 ... healthy and vibrant and alive one day ... diagnosed with a rare leukemia the next ... taken off life support within one month of being diagnosed. My husband and I lived at our Children's Hospital as well. We did not utilize the special "rooms" or the Ronald McDonald house either. We stayed in our daughters room day after day night after night ... sometimes we stayed in the tv lounge because the beeping of all those life support machines made it so difficult to even try and get consecutive sleep ... and by that I mean at least an hour straight right?
I admire the actions you and your husband took regarding the doctors. I WISH I had even THOUGHT to file a complaint. Makes me so sad to read what your hospital told you about the doctors doing minimum required care, but in a weird way I guess I knew trying to fight a Children's Hospital wouldn't ever work. I detest many of those doctors there and wish I would have chosen another hospital. Maybe it would have been the same, but maybe it wouldn't. So cold and callous and unfeeling they are. Not an ounce of compassion or care in their bones if you ask me. The nurses ... a whole other story ... best nurses I have EVER come in contact with ... the doctors ... forget IT! Blech.
We, too, had something happen at the hands of one of the PICU doctors. Something I overheard her say and do and from that moment in time everything went downhill for Amanda. I confronted not only the doctor, but the floor nurse, the fellows, the resident and even Amanda's oncologist. I wanted to see the notes from the rounds from that morning that her "mini me" stupid kiss @$$ assistant took while on the rounds and they REFUSED to let me see them and kept blaming the nurse. HELLO? Last time I checked I think nurses FOLLOW DOCTORS ORDERS not the other way around ... but they would NOT even admit that what I had heard was even said let alone carried out. It all had to do with the oscillator level being reduced at a much quicker rate than what was told originally to me and my husband by the one doctor we actually liked. He, sadly, was off his shift at the time and they just did it. They just lowered the level like they were turning down the thermostat. Very matter of fact and like we need to save electricity so let's turn it way down. From that point on everything went the wrong way.
Like you, I've since just realized that there are many many many many many things I would have done different including NEVER EVER giving in to taking my child off a life support because THEY were coercing me to do so. Heck no. I'd have waited days if not weeks or months. I wish I did.
I too have a terrible last memory of my daughter. I can't even begin to tell you. It eats away at me daily. At the time, she was on the oncology floor. I was leaving for the night to go home to my son (who was 6) as his life was completely uprooted. As I left, she was crying and screaming (chemo's side effects are horrifically painful ... no one talks about the reality of chemo) ... I can't remember if I said "I Love You" to her as I was leaving. Didn't think much of it at the time as my husband was there and I needed to get to my son. About 5 hours later my home phone rang and my husband said she was being put back in the PICU and into a medically induced coma.
There's more to the story, but that's the short of it ... I never had the chance to talk to her or hug her or even hear her scream ... again. When I finally did get to hug her ... I mean really hug her ... she was cold within a few seconds and I can still remember the lips like you wrote about. I can feel her cold cheek on my warm lips as I kissed her before I, too, left. HOW did I leave my baby that night? HOW? It haunts me to this day. I'd never leave if I knew the after math of all the choices. They'd have to physically remove me and I would not be nice and polite. I'm not sure if I was ... I don't remember much but the walk towards the elevator and the cold sterile unemotional blech of that horrific place. I want to NEVER EVER see it again.
Wow. This was a huge post, but it really honestly felt so good to just share it with someone I know had such a similar circumstance. I hate hospitals now. Hate them. I am so fearful of any and all doctors now too and I don't trust them as far as I can spit. I feel as though the post-traumatic stress from living 24/7 in a hospital and watching your child die there has tainted me forever against the medical profession. Some don't understand my feelings, but they've never had their child die let alone die while at a Children's Hospital. I know I was naive and had put our hospital up on a pedestal pretty much my entire life ... all I ever heard was what a fabulous hospital it was and blah this and blah that ... so of course that's where we're taking her ... of course ... kids go there and get better and go home and live happily ever after. Why go anywhere else? So stupid I was. So so stupid. I still have not been able to forgive myself for some of the choices I was forced to make as a parent for my child. The guilt is just overwhelming and just as awful as it was 7 years ago.
(((((((hugs)))))))))) and I'm sorry you are here. Sorry my post was so long too. I wish Max was right there with you and that you never needed to search for a place like this.
~michele
My name is Michele and I've been a member here for 5 years. My daughter died in October of 2004 in such a similar circumstance as your sweet Max. She was 8 1/2 ... healthy and vibrant and alive one day ... diagnosed with a rare leukemia the next ... taken off life support within one month of being diagnosed. My husband and I lived at our Children's Hospital as well. We did not utilize the special "rooms" or the Ronald McDonald house either. We stayed in our daughters room day after day night after night ... sometimes we stayed in the tv lounge because the beeping of all those life support machines made it so difficult to even try and get consecutive sleep ... and by that I mean at least an hour straight right?
I admire the actions you and your husband took regarding the doctors. I WISH I had even THOUGHT to file a complaint. Makes me so sad to read what your hospital told you about the doctors doing minimum required care, but in a weird way I guess I knew trying to fight a Children's Hospital wouldn't ever work. I detest many of those doctors there and wish I would have chosen another hospital. Maybe it would have been the same, but maybe it wouldn't. So cold and callous and unfeeling they are. Not an ounce of compassion or care in their bones if you ask me. The nurses ... a whole other story ... best nurses I have EVER come in contact with ... the doctors ... forget IT! Blech.
We, too, had something happen at the hands of one of the PICU doctors. Something I overheard her say and do and from that moment in time everything went downhill for Amanda. I confronted not only the doctor, but the floor nurse, the fellows, the resident and even Amanda's oncologist. I wanted to see the notes from the rounds from that morning that her "mini me" stupid kiss @$$ assistant took while on the rounds and they REFUSED to let me see them and kept blaming the nurse. HELLO? Last time I checked I think nurses FOLLOW DOCTORS ORDERS not the other way around ... but they would NOT even admit that what I had heard was even said let alone carried out. It all had to do with the oscillator level being reduced at a much quicker rate than what was told originally to me and my husband by the one doctor we actually liked. He, sadly, was off his shift at the time and they just did it. They just lowered the level like they were turning down the thermostat. Very matter of fact and like we need to save electricity so let's turn it way down. From that point on everything went the wrong way.
Like you, I've since just realized that there are many many many many many things I would have done different including NEVER EVER giving in to taking my child off a life support because THEY were coercing me to do so. Heck no. I'd have waited days if not weeks or months. I wish I did.
I too have a terrible last memory of my daughter. I can't even begin to tell you. It eats away at me daily. At the time, she was on the oncology floor. I was leaving for the night to go home to my son (who was 6) as his life was completely uprooted. As I left, she was crying and screaming (chemo's side effects are horrifically painful ... no one talks about the reality of chemo) ... I can't remember if I said "I Love You" to her as I was leaving. Didn't think much of it at the time as my husband was there and I needed to get to my son. About 5 hours later my home phone rang and my husband said she was being put back in the PICU and into a medically induced coma.
There's more to the story, but that's the short of it ... I never had the chance to talk to her or hug her or even hear her scream ... again. When I finally did get to hug her ... I mean really hug her ... she was cold within a few seconds and I can still remember the lips like you wrote about. I can feel her cold cheek on my warm lips as I kissed her before I, too, left. HOW did I leave my baby that night? HOW? It haunts me to this day. I'd never leave if I knew the after math of all the choices. They'd have to physically remove me and I would not be nice and polite. I'm not sure if I was ... I don't remember much but the walk towards the elevator and the cold sterile unemotional blech of that horrific place. I want to NEVER EVER see it again.
Wow. This was a huge post, but it really honestly felt so good to just share it with someone I know had such a similar circumstance. I hate hospitals now. Hate them. I am so fearful of any and all doctors now too and I don't trust them as far as I can spit. I feel as though the post-traumatic stress from living 24/7 in a hospital and watching your child die there has tainted me forever against the medical profession. Some don't understand my feelings, but they've never had their child die let alone die while at a Children's Hospital. I know I was naive and had put our hospital up on a pedestal pretty much my entire life ... all I ever heard was what a fabulous hospital it was and blah this and blah that ... so of course that's where we're taking her ... of course ... kids go there and get better and go home and live happily ever after. Why go anywhere else? So stupid I was. So so stupid. I still have not been able to forgive myself for some of the choices I was forced to make as a parent for my child. The guilt is just overwhelming and just as awful as it was 7 years ago.
(((((((hugs)))))))))) and I'm sorry you are here. Sorry my post was so long too. I wish Max was right there with you and that you never needed to search for a place like this.
~michele
