DownSyn Forum

burnsun

She had to go to the er by ambulance and is now in picu on a vent due to either aspirated vomit from the stomach big the others had or rsv. The are being as hopeful as they can..... But there is only a medium chance better if we make 48 hours

They said best case we will be vented for 10 days and our kids were all screaming when I left in ambulance with her

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 36 week little one with a variety of issues inc: cp & fragile x & Seizures & birth trauma

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Tigger · Posted: September 15 2011, 4:53 AM Post subject:

Praying for her & for the rest of you too.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

JanetG · Posted: September 15 2011, 7:38 AM Post subject:

Praying here too, Jane... Please update when you can.

_________________
Janet (45) and Jeff (45)
Joshua (angel) '85 (1 day old)
Sarah-age 23
Jaret-age 6
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

burnsun · Posted: September 15 2011, 10:38 AM Post subject:

we are at 80% on the vent and mixing nitrous to make it 73% and she stating 90. But we now have two arrterial lines and hopefully the vent can come down a little more...... three thoughts....1) H1N1 2) RSV or sudden onset pneumonia due to aspirating vomit (two others had vomit this week) but it is not behaving lke pnuemonia and reacting like the expect to antibiotics and our adoption team is checking to see if we can get a judge to come and finalize our adoption if necessarry instead of wait to assigned date cause I do not want her to go to heaven without a real name..... it that is the case they are te...lling us 50/50 which is better than last night!

I guess that is better..... it is wait out.... but none of them know how stong our girl is! How amazing she is....... but it was very hard to be asked whether to intubate or not and this time knowing that if Eric or chose not to she would die......

She has a fighting chance now and this gil has been fighting since the day she was born! She will show them!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 36 week little one with a variety of issues inc: cp & fragile x & Seizures & birth trauma

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

mellysmom · Posted: September 15 2011, 11:50 AM Post subject:

Still praying.

momlorac · Posted: September 15 2011, 12:18 PM Post subject:

saying a prayer

_________________
Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

Momof6 · Posted: September 15 2011, 1:43 PM Post subject:

Prayers, prayers and more prayers.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 18, Chelsea 15, Connor 13, Logan 8, Cody 5 & Austin 3 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

DanielsMommy · Posted: September 15 2011, 2:08 PM Post subject:

Many prayers coming her way. That sweet strong baby will show those docs. Praying so hard!!

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

burnsun · Posted: September 15 2011, 2:51 PM Post subject:

she is down to 65% and tolerating the vent dop well and they will take another cest film and see how lungs look and what is going on.

Our judge signed her adoption papers so she is officially Sarah Emmaline Grace Smith as of 1:30 pm this afternoon and she is not alone or and orphan if the wost happened.... we will still go back to court when she is all better and do it again but we have them in case of the worst thing which I cried for houses about as they sewed thos lines in last night.....it was scheduled for late Dec but we passed our 6 months and all other stuff was done.

She is fighting more than they though and surprising them all! Not me though!

They are still saying 7 - 10 dyas on the vent but now they are being much more hopeful......

and to my wonderous surprise.... or maybe I just needed this ...... a beautiful young woman with DS cleaned the table next to me in the cafe this am....... and her friend was cleaning the hallway...... dutifully and gainfully employed adults that made me feel like there was hope and I will tell them all how much this ment to me later.

I spoke to her she said that she is supposed to expidite her work..... she was just confused on expidite....and I told her usually it meand speed up and do well at same time but for today just being there was enough to make this mom's whole day! She miled and waved...... she said she would like to hug me but it is not allowed and I said I knew why and told her she was amazing and thanks........

it made my whole situation a little better and I loved telling Sarah about it when I came back up!

I love this girl!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 36 week little one with a variety of issues inc: cp & fragile x & Seizures & birth trauma

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Helen · Posted: September 15 2011, 6:14 PM Post subject:

Bless you Jane. I missed all this. I'm joining in with the prayers for all of you, but especially your little doughnut. Hang in there, xx

_________________
Helen

Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!

rlstewart · Posted: September 15 2011, 8:31 PM Post subject:

adding my prayers too

_________________
Racheal
mom to Henry (01/06), Ramona (06/08), and Cora (2/10)

Don't underestimate my ability
Don't definate my character
Don't belittle my authority
It's time you recognize my quality

-Peter Tosh, I Am That I Am

EAS1971 · Posted: September 15 2011, 9:11 PM Post subject:

Jane, I had no idea! I must have missed all this. Lots of prayers for your little doughnut! I know she is VERY strong and has already overcome major odds and has surprised everyone. She will keep doing that. Hugs for you and lots of prayers for her.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

mary c · Posted: September 15 2011, 9:15 PM Post subject:

I'm praying too!

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]
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[IMG]

Momtoseven · Posted: September 15 2011, 9:25 PM Post subject:

We'll keep praying for your Sarah Emmaline Grace - keep fighting!

Those things like meeting the girl in the cafe - they seem to happen just when you need them.

_________________
Maureen - Mom to Daniel(22), Brandon(20), Jordan(15), Thomas(14), Carrie(8), Samuel(6) and Mark (3)
https://www.carepages.com/carepages/MarkEdwardC32708

logansmom · Posted: September 15 2011, 10:35 PM Post subject:

She remains in our thoughts and prayers. Please continue to keep us updated.

Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

Googsmom · Posted: September 17 2011, 10:29 AM Post subject:

Prayers!!!

_________________
Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

shab2010 · Posted: September 18 2011, 3:28 AM Post subject:

prayers from me and my whole family and friends x

Solveig · Posted: September 18 2011, 10:30 AM Post subject:

I missed all this, been working non stop for the past half week. Give Sarah a warm hug from me, and hang in there!!!
Wish I could bring you dinner, Mom.
You know we're right there next to you in spirit.

_________________
Mom to:
Jesper 07/23/95 (stepson)
Hanne Torill 06/06/98 (daughter)
Benedikte 04/14/00 DS (daughter)
Mads & Emil 07/05/00 (stepsons)
Svein Atle 05/13/03 (son)

burnsun · Posted: September 18 2011, 10:47 AM Post subject:

Well we are doing somewhat better again today though they are having to sedate her like an elephant...... that much would knock out most adults.....

we get to pull out the NG tube they put in and down through her stomach and into the insetine and estart some feeds in tummy today.....

but her temp is still fluctuating but we are about to start the wean out of the nitrous and then after that....... maybe the vent by the middle of the week unless she is a shining star and then sooner....... but but but she is doing amazing!!!! SHe keeps trying to pull it out on her own!

Though amazing is a relative term ....but for me inbetween the tears it is still better!.

Met another angel this am waiting on his job and his friends with cp...... they told me they were always diving their parents and teachers nuts and spitting and throwing tantrums or so when they were little in school..... but they are mature now..... gave me a little more hope for my hell raisers!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 36 week little one with a variety of issues inc: cp & fragile x & Seizures & birth trauma

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Momtoseven · Posted: September 18 2011, 2:37 PM Post subject:

Keep fighting Emmaline - we are praying for you!!

_________________
Maureen - Mom to Daniel(22), Brandon(20), Jordan(15), Thomas(14), Carrie(8), Samuel(6) and Mark (3)
https://www.carepages.com/carepages/MarkEdwardC32708

jtkkmom · Posted: September 19 2011, 12:45 AM Post subject:

Just reading this now & I'm glad to hear that she is improving. Will pray for a continued speedy recovery.

_________________
Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

Tigger · Posted: September 19 2011, 10:02 AM Post subject:

Praying she continues to improve.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

seansmom · Posted: September 19 2011, 12:15 PM Post subject:

Glad to hear she is doing better. Talk about stress!!

_________________

Mom to Sean 9 yrs with DS and Carly 12 yrs

burnsun · Posted: September 29 2011, 5:36 PM Post subject:

after 17 days........ here she is

https://www.facebook.com/media/set/?set=a.10150473579620884.460712.812490883&l=240450b2ec&type=1

we are finally starting to talk about going home with O2 and cpap at night to keep her airway open. She can manage it mostly on her own when not sick so we are holding off on the trach tube if at all possible...... we have to be able to keep it open on CPAP for two more nights and then we can try with every 2 week visits to ent to monitor.

We did get the base line holter test and likely the pace maker is coming at some time too...... they want to repeat after we are home or if they see issues in monitor as it gets down loaded...... that plan will change

but she is doing so much better and I really hope to never have one on a vent this long again (10 days)

Thank fo all your thoughts and prayers they ment a lot!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 36 week little one with a variety of issues inc: cp & fragile x & Seizures & birth trauma

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

logansmom · Posted: September 29 2011, 8:24 PM Post subject:

So thankful to hear that she's so much better. Smile

She remains in our thoughts and prayers as you prepare to go HOME!

Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

Momtoseven · Posted: September 29 2011, 9:04 PM Post subject:

Oh my - she looks great and she is so beautiful, Jane!! So glad she's doing better. Thanks for sharing the pics.

_________________
Maureen - Mom to Daniel(22), Brandon(20), Jordan(15), Thomas(14), Carrie(8), Samuel(6) and Mark (3)
https://www.carepages.com/carepages/MarkEdwardC32708

thatfield · Posted: September 30 2011, 6:46 PM Post subject:

Jane, how is Miss Sarah Emmaline Grace Smith ? hope she is continuing to get stronger.

_________________
teresa,
mom to chelsey 6-9-84 collin 2-17-95, Caty 2-14-98, clay 8-3-99, chloe ds 1-21-03, caycie 9-28-04, Caden 4-9-07, mammy to Mason 11-30-06, new grandbaby due 8-27-10

burnsun · Posted: September 30 2011, 7:10 PM Post subject:

here are today's photos

https://www.facebook.com/media/set/?set=a.10150476995485884.461445.812490883&l=9e47e727e9&type=1

they are trying am/waking hours w/o the O2...... she is not as happy and sort of whiny..... we put it on to sleep but still having a lot of apnea and choking......

I think it is going to be 02 as needed in day and cpap at night/sleeping but we have to test the waters...... she is not as happy!

but it is nice to be wireless..... though I am afraid she may choke on regular floor when I step out and they might miss it......

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 36 week little one with a variety of issues inc: cp & fragile x & Seizures & birth trauma

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

thatfield · Posted: October 02 2011, 5:11 PM Post subject:

wireless is great if it will work for her. so glad she is stronger . she is such a cutie .......................

_________________
teresa,
mom to chelsey 6-9-84 collin 2-17-95, Caty 2-14-98, clay 8-3-99, chloe ds 1-21-03, caycie 9-28-04, Caden 4-9-07, mammy to Mason 11-30-06, new grandbaby due 8-27-10