[tri-med] Re: Decision for Baby Luke

It's so nice for a nurse to recognize the wants of a patient, not just the 
needs!  It's their job to see the technical stuff, but you know you have a 
good nurse when he/she recognizes that the hamburger was the problem, not a 
dosage or weak whatever!

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
----- Original Message ----- 
From: <NanlorW@xxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Friday, October 22, 2004 9:22 AM
Subject: [tri-med] Re: Decision for Baby Luke


>
> In a message dated 10/22/2004 7:04:39 AM, jfwolpert2@xxxxxxxxxxx writes:
>
> << this is what we have had set up for kam.  everything can be done short 
> of
>
> putting her on a vent. >>
>
> Dom had to be reintubated after his back surgery. The doc had told me he
> would probably be pretty much out of it for a day or so after his surgery. 
> But
> when he was in recovery, he was way more awake than anyone anticipated so 
> when he
> had the chance, he extubated himself. Docs thought he was ok, called me in 
> to
> see him, but by the time I got to the room in PICU, they were all in the
> room, re-intubating him, because he had slipped back under anesthesia and 
> they
> were afraid he would stop breathing (maybe he did, no one told me).They 
> had tried
> CPAP, but he would not leave the mask on. Well, they got him all intubated
> and about half an hour later he was wide awake and pissed off. They 
> decided to
> keep him intubated for another few hours, but he kept fighting everything,
> trying to pull IVs, central line, vent. Not a sleep for 24 hours type of 
> patient.
> So they had to sedate/paralyze/restrain him to keep him from really 
> hurting
> himself. Problem was, by then it was about 7 PM and it had been nearly 24 
> hours
> since he had anything to eat and he was hungry. I had promised him a McD's
> hamburger when he was awake and not vomiting and that is what he wanted. 
> One can
> not eat and be on a vent. More sedation. Then junk started accumulating in 
> his
> lungs. He ended up being on the vent for nearly two weeks. Then we had the
> little war between the orthopedic docs and the pulmonary docs. Ortho 
> wanted him
> up and moving and pulmo was afraid without the vent he would fill with 
> fluid
> and die. I stayed with him for nearly two weeks and the first night I went
> home, the nurse thought he was sleeping and turned her attention elsewhere 
> (I had
> left until nearly midnight) and by 12:30 AM he had every line and the vent
> pulled. The docs had left the vent off until morning to see how he was 
> doing, but
> the Xrays did not look good so they were going to re-intubate him. A resp
> iratory therapist caming riding in on his white charger and said, " Give 
> me today
> to just work with him. If he is not better by tonight, we can 
> re-intubate." So
> they gave him the go ahead. There were a bunch of really sick kids, 
> including
> the boy who had broken his neck and the parents went on line to find 
> better
> treatment than he will be a quadraplegic and they found a doc on the east 
> coast
> who had some experimental medicine going. The boy is walking today. There
> have been a couple of TV shows about him. But this RT made Dom his 
> personal
> project and was in there with him every 15 minutes that day, pounding his 
> back
> (very carefully), sitting him up, making him cough, making him breathe in 
> the face
> mask, and by the end of the day, he no longer needed the vent. Our kids do
> stuff different and I will always thank God for sending the angel RT that 
> day
> who recognized what was needed and just did it. A nurse who had been in 
> his room
> when it all started was there when he was moved to lower level of care. 
> She
> looked at me and said, "I can't help but believe that this all could have 
> been
> prevented if we had just gotten him that damn hamburger." I think she was
> right.
>
> Nan-mom to Dom, 21, tri 18 mosaic and bipolar; and Ali, 21, autism, TS, 
> ADHD
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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