My daughter just passed on Aug 9th 2010

[nursereilly]

Hello everyone....I posted on another forum here, and was suggested to come here.....

I had a special needs child Dianne, our "Princess Di" as we nicknamed her...she just turned 21 on July 5th....... we knew someday she would pass...but never in the manner that happened so suddenly.........I have cared for this amazing, wonderful child for her entire life at home.....

She has had many hospital admissions over her life due to pneumonia's, surgeries, etc......

She was born perfectly normal & healthy, and got sick with meningitis and encephalitis at 3 weeks old, they gave her a month to live "if she was lucky", so we basically took her home to die. she lived for 21 years and a month.....it wreaked havoc on her so m uch that it caused severe brain damage, and left her as a quadraplegic with seizures, a feeding tube.......and at 8 years old she got a trach....then in May 2004 she got septicemia, and was actually dying......they called us in and basically said it was only a matter of time.....then she miraculously got bettter.........but she then needed oxygen 24/7, and a ventilator to sleep on at night due to severe central apnea and also from the oscillating vent at the ICU that caused some lung damage ( that was one side effect that happens often...so we just went with the flow)

She came home and still went in the hospital periodicaly for usual pneumonias, etc.......the usual "here we go again" stuff......

she stayed as healthy as she could be and was pretty stable for a few years.......

We ended up moving down to Florida in May 2008, after me & my now husband were reunited after being apart for 25 years....since we went to high school together.....a story all of it's own!

So he bought my daughter a van with a wheelchair lift, added on a room for her etc etc.......all this for my daughter...who he treated and loved as his own......so she has only been in the hospital twice since we moved down here......a miracle in itself!

She did well, had recurrent UTI's over the last year.....no huge deal but still not great.......everything was going well then the day after she saw her new primary MD, due to her being 21 down here...they make you get adult doctors.....so we came home and she was changed........that was the last time she had urinated.......so she would hold her urine sometimes .....we could straight cath her if needed if more than 8 hours went by before she went ......rarely ever had to because she would eventually go......she also had home nursing 22 hrs a day.......so we figured she'd go ....just lets see.....having no clue what was really ahead of us......so al night nothing....next morning , nothing...not even with a cath.......off to ER we go......thinking probably a UTI again, antibiotics...and MAYBE an admission a night or two until everything settled down.........we get to ER......potassium is 6.4, her creatinine is 2.0.....was lower with her last bloodlabs about a month prior., bladder scan...nothing there..........so she got sent to another hospital that had a kidney specialist on staff in ICU that took her.........the creatinine was now 2.6 the next day, and the day after 3.0.......they told us she was in total renal failure.....and what do we want to do .......we discussed options.....and went home to talk about it ...called her dad back in Mass to tel him.....and we all decided she has been through enough in her life and we can't bear to see her going through any more........it was very strange because she looked absolutely beautiful and healthier than she ever has in most of her life....her skin was absolutely clear.......nothing wrong by looking at her....on the outside. She looked so good we copuldn't believe she was that sick....so we had her go to Tidewell Hospice after meeting with them and talking about it to explore every option and what was best for her......it was the hardest thing but most unselfish thing and most loving thing we could have ever done for her.........the hospice house was like a 5 star hotel...if you wanted it, and they could do it, you had it.......... we stopped her feeds because she had residual because her stomach was just not digesting any more food.....so they explained that it is actually more stress and uncomfortable on a person when they are in the process of passing.......so we agreed to not feed her........I was worried she was going to be hungry , but it never happened...she actually was very good and did excellent....never a sign she was hungry or anything........she went there on a Tuesday, and passed the next Monday.......they gave her meds to make her comfortable, and then when she was actually in the process of passing, they removed the vent..........she went very peacefully with her entire family around her father, aunt, uncle, cousins on her fathers side ( they drove down from Mass to be there with her and to see her before she passed and were hoping to make it before she passed) her holding her hand and telling her we will be ok, and not to be scared and not to worry.....the doctor who was there is phenomenal....he stayed at my daughters bedside for the entire time except to go eat lunch...........it was very sad , yet we are relieved she never has to stay stuck in a bed or having to have other people do things for her we take for granted, like scratching an itch, brushing teeth...etc..........It's just such a surreal thing after 21 years to suddenly have that person you've loved more than anything and cared for daily to be gone......... I see things around us that tells me she'd here......I saw things and heard things that tell me she is around......I don't care who thinks it's crazy or a bunch of nonsense.........I have seen it and heard it with my own eyes and ears.........It's still like a surreal experience .....PDVD_018.BMP this is a pic of her when she was little.......what a beautiful little girl~

[ModKonnie]

Hello everyone....I posted on another forum here, and was suggested to come here.....

I had a special needs child Dianne, our "Princess Di" as we nicknamed her...she just turned 21 on July 5th....... we knew someday she would pass...but never in the manner that happened so suddenly.........I have cared for this amazing, wonderful child for her entire life at home.....

She has had many hospital admissions over her life due to pneumonia's, surgeries, etc......

She was born perfectly normal & healthy, and got sick with meningitis and encephalitis at 3 weeks old, they gave her a month to live "if she was lucky", so we basically took her home to die. she lived for 21 years and a month.....it wreaked havoc on her so m uch that it caused severe brain damage, and left her as a quadraplegic with seizures, a feeding tube.......and at 8 years old she got a trach....then in May 2004 she got septicemia, and was actually dying......they called us in and basically said it was only a matter of time.....then she miraculously got bettter.........but she then needed oxygen 24/7, and a ventilator to sleep on at night due to severe central apnea and also from the oscillating vent at the ICU that caused some lung damage ( that was one side effect that happens often...so we just went with the flow)

She came home and still went in the hospital periodicaly for usual pneumonias, etc.......the usual "here we go again" stuff......

she stayed as healthy as she could be and was pretty stable for a few years.......

We ended up moving down to Florida in May 2008, after me & my now husband were reunited after being apart for 25 years....since we went to high school together.....a story all of it's own!

So he bought my daughter a van with a wheelchair lift, added on a room for her etc etc.......all this for my daughter...who he treated and loved as his own......so she has only been in the hospital twice since we moved down here......a miracle in itself!

She did well, had recurrent UTI's over the last year.....no huge deal but still not great.......everything was going well then the day after she saw her new primary MD, due to her being 21 down here...they make you get adult doctors.....so we came home and she was changed........that was the last time she had urinated.......so she would hold her urine sometimes .....we could straight cath her if needed if more than 8 hours went by before she went ......rarely ever had to because she would eventually go......she also had home nursing 22 hrs a day.......so we figured she'd go ....just lets see.....having no clue what was really ahead of us......so al night nothing....next morning , nothing...not even with a cath.......off to ER we go......thinking probably a UTI again, antibiotics...and MAYBE an admission a night or two until everything settled down.........we get to ER......potassium is 6.4, her creatinine is 2.0.....was lower with her last bloodlabs about a month prior., bladder scan...nothing there..........so she got sent to another hospital that had a kidney specialist on staff in ICU that took her.........the creatinine was now 2.6 the next day, and the day after 3.0.......they told us she was in total renal failure.....and what do we want to do .......we discussed options.....and went home to talk about it ...called her dad back in Mass to tel him.....and we all decided she has been through enough in her life and we can't bear to see her going through any more........it was very strange because she looked absolutely beautiful and healthier than she ever has in most of her life....her skin was absolutely clear.......nothing wrong by looking at her....on the outside. She looked so good we copuldn't believe she was that sick....so we had her go to Tidewell Hospice after meeting with them and talking about it to explore every option and what was best for her......it was the hardest thing but most unselfish thing and most loving thing we could have ever done for her.........the hospice house was like a 5 star hotel...if you wanted it, and they could do it, you had it.......... we stopped her feeds because she had residual because her stomach was just not digesting any more food.....so they explained that it is actually more stress and uncomfortable on a person when they are in the process of passing.......so we agreed to not feed her........I was worried she was going to be hungry , but it never happened...she actually was very good and did excellent....never a sign she was hungry or anything........she went there on a Tuesday, and passed the next Monday.......they gave her meds to make her comfortable, and then when she was actually in the process of passing, they removed the vent..........she went very peacefully with her entire family around her father, aunt, uncle, cousins on her fathers side ( they drove down from Mass to be there with her and to see her before she passed and were hoping to make it before she passed) her holding her hand and telling her we will be ok, and not to be scared and not to worry.....the doctor who was there is phenomenal....he stayed at my daughters bedside for the entire time except to go eat lunch...........it was very sad , yet we are relieved she never has to stay stuck in a bed or having to have other people do things for her we take for granted, like scratching an itch, brushing teeth...etc..........It's just such a surreal thing after 21 years to suddenly have that person you've loved more than anything and cared for daily to be gone......... I see things around us that tells me she'd here......I saw things and heard things that tell me she is around......I don't care who thinks it's crazy or a bunch of nonsense.........I have seen it and heard it with my own eyes and ears.........It's still like a surreal experience .....PDVD_018.BMP this is a pic of her when she was little.......what a beautiful little girl~

Hi Diannesmom,

I posted a welcome to you on your last post, but I will say it again--I am so sorry you have to be here, but we welcome you. There are many here who have been through similar experiences and will be here for support, encouragement and some sage advice on how to travel this difficult journey.

ModKonnie

[nursereilly]

Hi Diannesmom,

I posted a welcome to you on your last post, but I will say it again--I am so sorry you have to be here, but we welcome you. There are many here who have been through similar experiences and will be here for support, encouragement and some sage advice on how to travel this difficult journey.

ModKonnie

Thanks again! I appreciate that immensley.......