[tri-med] Re: It was worse than I thought

Yazmin,

Hi, me again!  I didn't see this message till after I sent the first reply!
Elanor does sometimes fight the vent.  They usually keep her sedated at
first so that she can rest and not be stressed about the tube.  They
typically give her versed, which keeps her pretty calm.  When she first went
to PICU and was intubated, they gave her a muscle relaxant so she would hold
still while they intubated and gave her a central line.  Then it was just
versed.  They are cutting back on it now, and she does wake up and chew on
the tube.  They nurses and respiratory techs aren't real crazy about that,
because it drops her sats.  But she doesn't really fight it much.  I think
she has been on a vent so many times in the last few months after her
surgery that she has kind of gotten used to it (it's sad isn't it?).  She
does breathe around the vent most of the time (meaning she takes her own
breaths as well as the ones the vent gives her), but not always.  It just
depends on how much sedation she has on board, and how tired she is.  As for
gagging, Elanor does when she has secretions built up in the tube, and she
gags and coughs.  She doesn't make any noise, but the vent beeps when she
does it because it effects the pressure.  I'm not sure what the cause for
the waking and gagging, but it might be just her trying to get the gunk out
of her lungs, and it is really coughing.  Elanor has bad spots, usually in
the early mornings, but then she feels better later on, and the bad spots
get fewer and far between.  They just try to keep her clear by suctioning,
and give her her treatments and her percussion.  They use the percussor vest
here, and it does a great job at knocking stuff loose.  

I hope I have helped.  Keep your chin up, and stay strong Momma!


Jennifer Vanderbeek
Boise, Idaho, USA
Mom to Arwen (10); Elanor (8), Trisomy 18; Caregiver to Joe (29), Cerebral
Palsy; and Wife to Andrew (I'm not telling how old he is because he's
younger than me!)

Check out Elanor's CaringBridge site at:

http://www.caringbridge.org/visit/elanoranne 





-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Yazmin castro
Sent: Wednesday, March 19, 2008 11:45 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: It was worse than I thought

I wanted to ask you some questions about Eleanor or another mom that their
child has gone through the same. Now that she is sedated, does she try to
fight the vent, meaning trying to breathe on her own trying to wake up?
Because Kira today early morning tried to fight the vent got all agitated
and had to bag her because her sats were very low, trying to pull out the
tube.They also gave her a drug to paralyze her. Is Elanor on that too? I am
very afraid that she is feeling pain, I also see her gag at times. I tell
the nurses and they give her sedation medication, but I am so very afraid
that when I am not there they wont see her gagging and waking up because she
cannot make any kind of noise. Does Elanor gag also or does she try to wake
up?
 
Yazmin
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and
she loves to talk.


----- Original Message ----
From: Jennifer Vanderbeek <Phil46@xxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Wednesday, March 19, 2008 7:25:51 AM
Subject: [tri-med] Re: It was worse than I thought

Yazmin,
I know exactly how you feel.  Elanor is in PICU with flu, and is also
intubated.  My advice is to take advantage of the time she is sedated and
has her own nurse to rest yourself.  They emotional drain is exhausting, and
you can wear yourself out without even knowing it.  Don't worry, it makes it
worse!  At least she is able to rest and let the vent breathe for her while
she heals.  It is so hard to see your little one all connected to machines.
Trust in God and He will take care of her and you too.  My prayers will be
with you today...


Jennifer Vanderbeek
Boise, Idaho, USA
Mom to Arwen (10); Elanor (8), Trisomy 18; Caregiver to Joe (29), Cerebral
Palsy; and Wife to Andrew (I'm not telling how old he is because he's
younger than me!)

Check out Elanor's CaringBridge site at:

http://www.caringbridge.org/visit/elanoranne 



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Yazmin castro
Sent: Wednesday, March 19, 2008 12:28 AM
To: tri-med@xxxxxxxxxxxxx; trisomy10q@xxxxxxxxxxxxxxxx
Subject: [tri-med] It was worse than I thought

Kira is in the hospital, it turns out she has pneumonia. She is very ill,
today they had to intubate her because she was working way too hard to
breathe. I feel very depressed. I have never in all her hospitalizations,
felt as if there was a chance I would lose my baby. We are in the UCLA
medical center is a very good hospital with very good doctors. But if you
are the type that want to stay with your child all the time 24/7, it's not
that good for you because they don't let you sleep at your child's bedside.
So I am at home worried, calling the nurses but I also want to rest. I
really, really hope she gets off of the ventilator. I just can't wait to see
her smile. I leave everything to god I know my daughter is in good hands, no
one is greater than god.
Yazmin  
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and
she loves to talk.



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