Layla's 2nd VEPTR procedure

[Guest guest]

Finally home from the hospital, where things didn't go as smoothly as planned

for my baby girl

She was supposed to have a lengthening of the first VEPTR, as well as add a rib

to rib VEPTR on her left side to help expand her rib cage - more room for lung

growth / capacity.

Expansion went well, but when trying to add the rib to rib on her left side, it

broke one of her ribs. SOOOO, Dr decided to try another rib and broke that one

as well. Needless to say, 2 additional incisions (4 fresh ones altogether) and

no hardware, but 2 broken ribs.

She also developed a small pneumothorax (air leaking from lungs), which the

nurses said would " hopefully " repair itself.

I should have also said that the pre-op blood work indicated low blood

platelets??? Normal should be between 150-450 and Layla's was at 108... post op

it was extremely low at 47. No one told us this until discharge and when I

asked WHAT??? The only answer I got was " Just try to keep her safe from sharp

corners and follow up with her pediatrician " ....

[Guest guest]

Wasn't finished ranting and raving....but, my last comment was going to be:

I feel like I am losing faith here....Like maybe her medical team isn't working

together to make her journey as smooth as possible...Like she is suffering

excessively. My heart is broken for my baby girl. And when I say baby, I mean

LITERALLY. She is only 2 years old and according to doctors she has about 10

more years of this to go. I'm dying inside.

Sorry for the downer...any advice???

Thanks in advance...

T.,

>

> Finally home from the hospital, where things didn't go as smoothly as planned

for my baby girl

>

> She was supposed to have a lengthening of the first VEPTR, as well as add a

rib to rib VEPTR on her left side to help expand her rib cage - more room for

lung growth / capacity.

>

> Expansion went well, but when trying to add the rib to rib on her left side,

it broke one of her ribs. SOOOO, Dr decided to try another rib and broke that

one as well. Needless to say, 2 additional incisions (4 fresh ones altogether)

and no hardware, but 2 broken ribs.

>

> She also developed a small pneumothorax (air leaking from lungs), which the

nurses said would " hopefully " repair itself.

>

> I should have also said that the pre-op blood work indicated low blood

platelets??? Normal should be between 150-450 and Layla's was at 108... post op

it was extremely low at 47. No one told us this until discharge and when I

asked WHAT??? The only answer I got was " Just try to keep her safe from sharp

corners and follow up with her pediatrician " ....

>

[Guest guest]

Im so sorry Has there been any talk of halo and casting as an

avenue to buy time to help her lil bones/ribs grow stronger? I dont know

if it would even be possible, but I have seen kiddos with hardware go

through halo....I know the decision would be based on many factors, but

thats what came to mind first (and of course Im no doc)....I know you're

in survival mode now but dont hesitate to call me if you want to

scream...and then brainstorm. Im here for you sista...Please dont feel

alone.

HRH

(303) 507 2485

> Wasn't finished ranting and raving....but, my last comment was going to

> be:

> I feel like I am losing faith here....Like maybe her medical team isn't

> working together to make her journey as smooth as possible...Like she is

> suffering excessively. My heart is broken for my baby girl. And when I

> say baby, I mean LITERALLY. She is only 2 years old and according to

> doctors she has about 10 more years of this to go. I'm dying inside.

>

> Sorry for the downer...any advice???

>

> Thanks in advance...

> T.,

>

>

>>

>> Finally home from the hospital, where things didn't go as smoothly as

>> planned for my baby girl

>>

>> She was supposed to have a lengthening of the first VEPTR, as well as

>> add a rib to rib VEPTR on her left side to help expand her rib cage -

>> more room for lung growth / capacity.

>>

>> Expansion went well, but when trying to add the rib to rib on her left

>> side, it broke one of her ribs. SOOOO, Dr decided to try another rib

>> and broke that one as well. Needless to say, 2 additional incisions (4

>> fresh ones altogether) and no hardware, but 2 broken ribs.

>>

>> She also developed a small pneumothorax (air leaking from lungs), which

>> the nurses said would " hopefully " repair itself.

>>

>> I should have also said that the pre-op blood work indicated low blood

>> platelets??? Normal should be between 150-450 and Layla's was at 108...

>> post op it was extremely low at 47. No one told us this until discharge

>> and when I asked WHAT??? The only answer I got was " Just try to keep her

>> safe from sharp corners and follow up with her pediatrician " ....

>>

>

>

>

[Guest guest]

Oh my gosh!I am so so sorry to hear this your poor baby. It's bad enough to have go through this but add on more pain :( your in my prayers and we are with you in our hearts. Live, laugh, and loveJoyOn Aug 5, 2012, at 10:40 AM, "brendalinnia@..." <brendalinnia@...> wrote:

Finally home from the hospital, where things didn't go as smoothly as planned for my baby girl

She was supposed to have a lengthening of the first VEPTR, as well as add a rib to rib VEPTR on her left side to help expand her rib cage - more room for lung growth / capacity.

Expansion went well, but when trying to add the rib to rib on her left side, it broke one of her ribs. SOOOO, Dr decided to try another rib and broke that one as well. Needless to say, 2 additional incisions (4 fresh ones altogether) and no hardware, but 2 broken ribs.

She also developed a small pneumothorax (air leaking from lungs), which the nurses said would "hopefully" repair itself.

I should have also said that the pre-op blood work indicated low blood platelets??? Normal should be between 150-450 and Layla's was at 108... post op it was extremely low at 47. No one told us this until discharge and when I asked WHAT??? The only answer I got was "Just try to keep her safe from sharp corners and follow up with her pediatrician"....

=

[Guest guest]

No advice, but I am sorry to hear about the horrible day you all had. There have been days where I have questioned the doctor team as well. Hang in there mom and do what is best for your baby girl! Sent from my iPadOn Aug 5, 2012, at 10:44 AM, "brendalinnia@..." <brendalinnia@...> wrote:

Wasn't finished ranting and raving....but, my last comment was going to be:

I feel like I am losing faith here....Like maybe her medical team isn't working together to make her journey as smooth as possible...Like she is suffering excessively. My heart is broken for my baby girl. And when I say baby, I mean LITERALLY. She is only 2 years old and according to doctors she has about 10 more years of this to go. I'm dying inside.

Sorry for the downer...any advice???

Thanks in advance...

T.,

>

> Finally home from the hospital, where things didn't go as smoothly as planned for my baby girl

>

> She was supposed to have a lengthening of the first VEPTR, as well as add a rib to rib VEPTR on her left side to help expand her rib cage - more room for lung growth / capacity.

>

> Expansion went well, but when trying to add the rib to rib on her left side, it broke one of her ribs. SOOOO, Dr decided to try another rib and broke that one as well. Needless to say, 2 additional incisions (4 fresh ones altogether) and no hardware, but 2 broken ribs.

>

> She also developed a small pneumothorax (air leaking from lungs), which the nurses said would "hopefully" repair itself.

>

> I should have also said that the pre-op blood work indicated low blood platelets??? Normal should be between 150-450 and Layla's was at 108... post op it was extremely low at 47. No one told us this until discharge and when I asked WHAT??? The only answer I got was "Just try to keep her safe from sharp corners and follow up with her pediatrician"....

>

=