A Very Sad Update from Mistymama - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#1 of 36 Old 12-14-2010, 03:26 PM - Thread Starter
 
chely7425's Avatar
 
Join Date: Aug 2007
Location: Washington
Posts: 3,649
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I have a very sad update from MistyMama about baby Gavin: Gavin is not doing well. We decided we do not want him to suffer simply to extend his life & put a 'do not resuscitate' in place along with measures to make him more comfortable. If things improve, we choose to bring him home, with hospice. There are no words to describe this nightmare & the agony of watching Gavin suffer. Please keep her and her family in your thoughts and prayers, this a position no family should ever have to be in.

 

Update 12/17 (c&p from FB): They have identified where he is loosing protein and can give a certain steriod to help stop it - that also means we can stop the nasty ACTH injections. Our goal is keeping Gavin comfortable and give him the best quality of life possible, w...hile not extending his life with heroic measures. He has comfort meds (for pain & rest) avaliable and we will continue work on his seizures - he's starting a ketogenic diet Monday. But most of all, we will be able to care for him AT HOME where he belongs, with very supportive nursing care. Hopefully he can come home in time for Christmas.  Also forgot to mention some genetic tests came back - Gavin's lissencephaly is genetically based, some deleted chromosome. We'll meet with Dr's next week for more detail and hopefully be able to put a name/syndrome to this.


Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
chely7425 is offline  
#2 of 36 Old 12-14-2010, 04:52 PM
 
miso_soup's Avatar
 
Join Date: Mar 2010
Location: Pittsburgh, PA
Posts: 186
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Oh my. I am so, so sorry. Words can't describe. My thoughts and prayers are with you and your family, mistymama. 


Catherine, DH and DS kid.gif Dylan Michael, born 9/23/10 
miso_soup is offline  
#3 of 36 Old 12-14-2010, 05:05 PM
 
CherryBomb's Avatar
 
Join Date: Feb 2005
Location: Indiana
Posts: 8,143
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

Oh mistymama :(  I'm so sorry.  I think about you and Gavin often.  We are praying for you.  grouphug.gif

CherryBomb is offline  
#4 of 36 Old 12-14-2010, 05:31 PM
 
beckyand3littlemonsters's Avatar
 
Join Date: Sep 2006
Location: Leeds, England
Posts: 3,277
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
hug.gif

Becky, sahm to angel.gif25/04/2000 Chloe 12/04/2002 Cameron 19/02/2004 Caitlin 28/06/2005 angel.gif24/07/2006 and Caden 14/03/2008

Xander 19/05/2011
angel.gif 19.05.2012 angel.gif 18.08.2012 angel.gif 24.05.2013 angel.gif 25.6.2013 belly.gif 04.09.2014 uc.jpg

beckyand3littlemonsters is offline  
#5 of 36 Old 12-14-2010, 07:09 PM
 
breanna31's Avatar
 
Join Date: Dec 2009
Location: Michigan
Posts: 128
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I am so sorry to hear this.  You and your family are in my thoughts.  I still think about you and baby Gavin often.


Waiting, not so patiently, to meet our new addition this October
breanna31 is offline  
#6 of 36 Old 12-15-2010, 01:11 AM
 
Melly24's Avatar
 
Join Date: Mar 2008
Location: New Zealand
Posts: 1,541
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

oh, mistymama. I'm so very sorry to hear this sad news about Gavin. My heart goes out to you and your family

x


Mama to DD Feb '08 (9lbs), DS Oct '10 (10lbs) hbac.gif, DD Jan '13 hbac.gif

Melly24 is offline  
#7 of 36 Old 12-15-2010, 06:42 AM
 
Annemarie42's Avatar
 
Join Date: Feb 2010
Posts: 241
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I am so sorry. Mistymama, you, Gavin, and your family are in my prayers.


Anne-Marie
expecting #3 October 26, 2010
Annemarie42 is offline  
#8 of 36 Old 12-15-2010, 06:43 AM
 
kallyn's Avatar
 
Join Date: May 2005
Location: central PA
Posts: 1,511
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

mecry.gif


Me love.gif, DH guitar.gif, and DD baby.gif9/27/10!
kallyn is offline  
#9 of 36 Old 12-15-2010, 06:54 AM
 
Breathless Wonder's Avatar
 
Join Date: Jan 2004
Posts: 4,262
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I'm so sorry. greensad.gif


He who can no longer pause to wonder and stand rapt in awe is as good as dead; his eyes are closed.  ~Albert Einstein
Breathless Wonder is offline  
#10 of 36 Old 12-15-2010, 07:15 AM
 
MaybeJ's Avatar
 
Join Date: May 2009
Posts: 503
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Words cannot describe, is right.  So, so very sorry to hear this mistymama.  I cannot even imagine.  Your family is in my thoughts.

MaybeJ is offline  
#11 of 36 Old 12-15-2010, 09:42 AM
 
sunwillshine's Avatar
 
Join Date: Feb 2009
Location: mid-Atlantic
Posts: 2,325
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Thinking of you all, mistymama, and sending you and baby Gavin peace and love.  xo


Part hippie-chick, part type-A career woman, all mama. Enjoying life as a wife to my partner of 11 years, and a mama to our smarty-pants toddler, Cadence.

sunwillshine is offline  
#12 of 36 Old 12-15-2010, 09:58 AM
 
Join Date: Feb 2010
Posts: 607
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

how terribly heartbreaking. i'm so sorry this is happening. i shared your story of sweet gavin w/ my husband many weeks ago and we think of him, and your family, often. 

lotusma is offline  
#13 of 36 Old 12-15-2010, 09:54 PM
 
Monarchgrrl's Avatar
 
Join Date: Aug 2007
Location: San Francisco
Posts: 2,240
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm so sorry! greensad.gif My heart goes out to you and your family. You'll be in my thoughts.

Beth- WOHM slinggirl.gif  -Madly in love with my Wife- SAHMhola.gifandbabyf.gifSophia, born 11/2/10, at home! homebirth.jpgExpressing love, one ounce at a time!  1pump.gif

Monarchgrrl is offline  
#14 of 36 Old 12-16-2010, 09:55 AM
 
prettyuglybefore's Avatar
 
Join Date: Jun 2007
Location: Colorado
Posts: 217
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Sending peace and love to mistymama and her family.


Molly - Hard working mama to DD 06/06 , #2 9/2010!
prettyuglybefore is offline  
#15 of 36 Old 12-16-2010, 11:21 AM
 
outlier's Avatar
 
Join Date: Sep 2008
Location: far from average
Posts: 529
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I'm so sorry to hear about sweet little Gavin.  I wish peace for Gavin and strength for you and your family to get through this awful time. 


9/2011 items decluttered
outlier is offline  
#16 of 36 Old 12-16-2010, 11:41 AM
 
texmati's Avatar
 
Join Date: Oct 2004
Posts: 6,850
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

so, very, very sorry mistymama.


Texmati-- Knitter, Hindu, vegetarian, WOHM. Wife to superdadsuperhero.gif and mom to DS babyf.gif24 months, and DD boc.gif 8 months! .

texmati is offline  
#17 of 36 Old 12-17-2010, 08:11 AM - Thread Starter
 
chely7425's Avatar
 
Join Date: Aug 2007
Location: Washington
Posts: 3,649
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Update in OP!


Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
chely7425 is offline  
#18 of 36 Old 12-17-2010, 09:43 AM
 
CherryBomb's Avatar
 
Join Date: Feb 2005
Location: Indiana
Posts: 8,143
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

I'm so glad to hear that they're making some progress on figuring out what's wrong.  We will keep praying grouphug.gif

CherryBomb is offline  
#19 of 36 Old 12-17-2010, 10:39 AM
 
ryleeee's Avatar
 
Join Date: Feb 2005
Location: royston vasey
Posts: 2,629
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

DDCC

 

so very sorry to hear about gavin :(

you're all in my prayers. 


mama to 8 year old haye  and 3 year old zao
ryleeee is offline  
#20 of 36 Old 12-18-2010, 11:55 AM
 
ILovePie's Avatar
 
Join Date: Aug 2008
Location: Midwest, USA
Posts: 523
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

My heart breaks for Mistymama and her entire family.  I have been thinking about her a lot the past few days and just haven't known what to say.

 

I'm thinking of you, Mistymama. 


B, happily married to M. Mother to two boys: B (3/08) and A (9/10)
ILovePie is offline  
#21 of 36 Old 12-19-2010, 04:49 PM
 
Eresh's Avatar
 
Join Date: Jul 2007
Location: Gainesville, VA
Posts: 776
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I'm so sorry ... my thoughts are with Mistymama and poor baby Gavin.  I hope he's able to come home.


Loving DH geek.gif, raising DS1 learning.gif(01/08) and DS2 bfinfant.gif(10/10), caring for cat.gif x 3 .
Eresh is offline  
#22 of 36 Old 12-20-2010, 08:36 AM
 
Join Date: Feb 2010
Location: UK milton keynes
Posts: 553
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

oh my, i'm praying so hard for a christmas miracle for them and clutching my baby just that little bit closer. always thankful.

 

love to you misty and strength n comfort to baby x


heartbeat.gifmy DH DS (5) angel1.gifx2... rainbow1284.gif DD 8th oct!! 9lb 5oz  Madison Akina-Mae - i wear her, feed her, co-sleep and hold her just about every minute of the day DS is my little scientist and the most loving person i ever did meet.  I'm lucky and I know it
corban's mum is offline  
#23 of 36 Old 12-20-2010, 08:41 AM - Thread Starter
 
chely7425's Avatar
 
Join Date: Aug 2007
Location: Washington
Posts: 3,649
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Gavin passed away yesterday, please keep Candace and her family in your prayers. We also need to decide what we would like to do with the money we have collected for her... Do we maybe want to get her a plant or bamboo or something? I have no idea...

Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
chely7425 is offline  
#24 of 36 Old 12-20-2010, 08:50 AM
 
Join Date: Feb 2010
Location: UK milton keynes
Posts: 553
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

candle.gifmecry.gif oh no. i cant say anything. too many tears. poor mama poor sweet boy


heartbeat.gifmy DH DS (5) angel1.gifx2... rainbow1284.gif DD 8th oct!! 9lb 5oz  Madison Akina-Mae - i wear her, feed her, co-sleep and hold her just about every minute of the day DS is my little scientist and the most loving person i ever did meet.  I'm lucky and I know it
corban's mum is offline  
#25 of 36 Old 12-20-2010, 11:02 AM
 
Melly24's Avatar
 
Join Date: Mar 2008
Location: New Zealand
Posts: 1,541
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

tears here too. how heartbreaking. 

 

thinking of you Candace and family and your sweet baby Gavin. May he rest gently in peace

 

xxxx


Mama to DD Feb '08 (9lbs), DS Oct '10 (10lbs) hbac.gif, DD Jan '13 hbac.gif

Melly24 is offline  
#26 of 36 Old 12-20-2010, 11:07 AM
 
texmati's Avatar
 
Join Date: Oct 2004
Posts: 6,850
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

candle.gif

 

I'm so, so very sorry to hear this.


Texmati-- Knitter, Hindu, vegetarian, WOHM. Wife to superdadsuperhero.gif and mom to DS babyf.gif24 months, and DD boc.gif 8 months! .

texmati is offline  
#27 of 36 Old 12-20-2010, 11:54 AM
 
CherryBomb's Avatar
 
Join Date: Feb 2005
Location: Indiana
Posts: 8,143
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

Oh no :(  I'm so sorry.  I was tentatively hopeful when I read the earlier update.  I have no words.  

 

 

CherryBomb is offline  
#28 of 36 Old 12-20-2010, 02:01 PM
 
prettyuglybefore's Avatar
 
Join Date: Jun 2007
Location: Colorado
Posts: 217
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

candle.gif

 

My heart goes out to Candace and her family. 


Molly - Hard working mama to DD 06/06 , #2 9/2010!
prettyuglybefore is offline  
#29 of 36 Old 12-20-2010, 05:53 PM
 
APBTlover's Avatar
 
Join Date: Dec 2007
Location: Southern US
Posts: 754
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

 So much tragedy lately... rest in sweet peace, baby Gavin. And strength and comfort be to those who knew and loved him.

candle.gif


treehugger.gif SAHM with a precious toddler and the love of my life, expecting a new little one July 2014!
APBTlover is offline  
#30 of 36 Old 12-20-2010, 07:09 PM
 
miso_soup's Avatar
 
Join Date: Mar 2010
Location: Pittsburgh, PA
Posts: 186
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Such devastating news. I'm so sorry, mistymama. You and your family are in my thoughts and prayers. Rest well, dear sweet Gavin. candle.gif


Catherine, DH and DS kid.gif Dylan Michael, born 9/23/10 
miso_soup is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off