Blessing upon blessing!

**MaryCarney** · 07-28-2011, 01:09 PM

Many of you have shared in the journey of my long-time homecare patient Elizabeth. I first started caring for her at age 6 months.
She has a whole raft of congenital heart, skull and immune system defects. She came home from the NICU at five months on a ventilator with a tracheostomy tube, feeding tube and basically a little ICU in the parsonage her sweet parents called home. They have had very few days since then without a nurse in their home for at least part of the day and all night.

Sick kiddo - in and out of ICU. Several open heart surgeries.

Fast forward 2 1/2 years.

Off the vent, off oxygen, walking - and basically the cutest, happiest kid I know. Yesterday she left the hospital without her tracheostomy tube, which she has had since the age of six weeks. So finally she can attend Sunday School , pre-school and spend the night at the grandparents without a nurse or her mom needing to be in the same room. Last night, she slept without being hooked up to an oximeter, heart monitor and trach collar for the first time EVER.

Yeah, I'm out of a job - for which I am so thankful!

(No worries - I had two jobs anyway

)

Oh, and to add to the blessing, Mom and Dad just found out they are expecting another blessing in February!!!

**mh3rdwheel** · 07-28-2011, 01:48 PM

Originally Posted by MaryCarney

Many of you have shared in the journey of my long-time homecare patient Elizabeth. I first started caring for her at age 6 months.
She has a whole raft of congenital heart, skull and immune system defects. She came home from the NICU at five months on a ventilator with a tracheostomy tube, feeding tube and basically a little ICU in the parsonage her sweet parents called home. They have had very few days since then without a nurse in their home for at least part of the day and all night.

Sick kiddo - in and out of ICU. Several open heart surgeries.

Fast forward 2 1/2 years.

Off the vent, off oxygen, walking - and basically the cutest, happiest kid I know. Yesterday she left the hospital without her tracheostomy tube, which she has had since the age of six weeks. So finally she can attend Sunday School , pre-school and spend the night at the grandparents without a nurse or her mom needing to be in the same room. Last night, she slept without being hooked up to an oximeter, heart monitor and trach collar for the first time EVER.

Yeah, I'm out of a job - for which I am so thankful!

(No worries - I had two jobs anyway

)

Oh, and to add to the blessing, Mom and Dad just found out they are expecting another blessing in February!!!

I am happy to that wonderful kid is able to do things that were impossible before. god Bless.

**Russ** · 07-28-2011, 01:57 PM

How outstanding is that?!

**OOwl** · 07-28-2011, 01:59 PM

In the bleak world of depressing news stories, this is a lovely story of hope, courage, dedication, and love. Thank you for being part of that special family's success, and thank you for sharing it with us. Made me smile.

**bumplett** · 07-28-2011, 02:00 PM

I'm so happy to hear you are out of a job!!!!

Are her medical issues genitic? What are he parents chances for a healthy 2nd baby??

**MaryCarney** · 07-28-2011, 02:18 PM

Her medical issues are - to a degree - genetic BUT most likely a spontaneous mutation. There is no testing for her conditions - genetic anyhow. She's a really interesting case, as the two teams of geneticists actually disagree on which syndrome (if any) she has.
Possibilities have included CHARGE syndrome. Stickler Syndrome and a couple of others. She does not fit the major category profile for any of them.
She's just Elizabeth!
Cute story - while she was in the hospital to get the trach removed, she had to wear one of those security ankle bracelets. She got hold of my keys, and tried every single one of them trying to 'unlock' that thing!

**jas** · 07-28-2011, 02:29 PM

Wonderful story!

**erinalexmom** · 07-28-2011, 09:50 PM

This is exactly what being a nurse is all about

im always telling my patients that I am trying to put myself out of work

wonderful story!

**bumplett** · 07-28-2011, 11:21 PM

I certainly wish her (and her family) years of happiness.

**mauimagic** · 07-29-2011, 01:27 AM

Mahalo MC for sharing your blessings - note to self - never give up!!

**Dutchie** · 07-29-2011, 02:01 AM

What wonderful news!!!!

**max915** · 07-29-2011, 07:54 AM

What a wonderful, wonderful story. God was watching over that little.

**Debbie-cat** · 07-29-2011, 11:46 AM

What a wonderful story!! I am glad you are out of a job.

**SandNOceanGirl** · 07-29-2011, 05:43 PM

Thank you for sharing! Isn't God a wonderful God! What a blessing for you to be able to be a part of something wonderful.

**mh3rdwheel** · 07-29-2011, 06:47 PM

Originally Posted by MaryCarney

Her medical issues are - to a degree - genetic BUT most likely a spontaneous mutation. There is no testing for her conditions - genetic anyhow. She's a really interesting case, as the two teams of geneticists actually disagree on which syndrome (if any) she has.
Possibilities have included CHARGE syndrome. Stickler Syndrome and a couple of others. She does not fit the major category profile for any of them.
She's just Elizabeth!
Cute story - while she was in the hospital to get the trach removed, she had to wear one of those security ankle bracelets. She got hold of my keys, and tried every single one of them trying to 'unlock' that thing!

Mary, Elizabeth is defying the odds, my son had Nicki that died had of birth defects and he did better for his disability then most.