Emerence is home

January 6, 2006

Hi all,

Emerence did well. We see her ENT at a local hospital that has

affiliations with Boston Childrens. Her ENT asked one of the

anesthiologists who used to work at Childrens to come in on her day

off and she agreed so I felt better. Turns out she has 4 kids, one

autism and one failture to thrive (who is doing well today). The

ENT did say she would get me in the waiting room in 30

minutes...well, 45 minutes out I started panicking so the desk nurse

called int and they were just finishing up. Just turns out they had

spent extra time with the anesthesia etc and didnt' realize it would

run so long. PHEW. Emerence looked AWFUL and was in pain. It was

hard to get her to take meds/liquids for a while so I was using a

straw as a dropper. Her ENT p lanned ahead for her to stay and

watch her sugars and she did well once we got upstairs. I had

brought drinkable yogurt and her carnation powder to mix witht he

milk. However, she let us know when she was in pain and at one

point yelled at the nurse, " I WANT my MEDICATION " . So they decided

to giver her tylenol with codeine at 8 pm thinkingi t would make her

sleep and she was up until almost midnight running around like a

crazy kid. We came home this am and she slept (me too!) from 10 -

11:30. However, I wouldn't mind if she went in for another 2 or so

hours - she is irritable on top of her normal diva of a self

Her voice sounds the exact same so I am very relieved!!!!!

The one highlight was a med student who the on floor pedi guy sent

in to see if I would talk, telling her that she might never see

another kid who was SGA with RSS characteristics. She spent almost

an hour asking me questions about what she could look for in her

patients and who the experts were.

Thanks for all the concern!

, mom to 6 and Emerence 34 mo 25lb 34 "

January 7, 2006

I am really glad that Emerence is doing so well. It will be fun to watch her

progress!

This discussion of the Tylenol with Codeine is really interesting to me.

Charissa has had it several times after surgeries and it affected her more like

Max than Emerence - it took the edge off the pain, but she was alert & very

" normal " acting - watched videos but didn't fall asleep. The last 2 oral

surgeries (and other times too) she has had Vicodin successfully. But -

Charissa is VERY hard to sedate.

I remember when she was younger & had her various in-patient surgeries they

told me that she needed more than usual for her size to sedate her. She had 10

in-patient or surgery center proceedures before she was a teenager, so she had

quite alot. Within the last 7 years she has had to receive a " sedative " 3 of

the 4 times when her left elbow was dislocated, and within the past year she has

been sedated twice for oral surgery (place dental implants and recently remove

an impacted wisdom tooth). Each time she was able to fight off the sedation.

With the 4th elbow dislocation, the E.R. doctor was working on her for about 2

hours trying to get it back into place. They gave Charissa several doses,

alternating between Versed and Fentanyl. Charissa kept talking and arguing with

the doctors, and they finally said they had given her as much as a large adult

man should have & they couldn't give her more. They called in 2 more doctors &

2 nurses and 4 of them held her down while the

E.R. doctor reduced (put back into joint) the elbow. He said we must really

have our hands full at home, if her " constitution " was strong enough to fight

off such strong drugs! <lol>

I forget what the oral surgeon gave her for sedation, but he also had to

give her the maximum he could. Charissa was sedated enough to calm down & let

him work (as long as he kept her eyes covered with a towel!), but she taked to

him through the entire proceedures. I talked to our Neurologist about this, and

he said he has heard of a few cases like this (he used to teach at a major

medical school) and suggested that we ask for Propofol if she needed sedation

again. Thought I would share that in case anyone else found that their child

was the same!

in Alaska

(mom of Charissa, age 21 and *not* RSS, but had all the issues, plus some)

RSS-Support wrote:

Date: Fri, 06 Jan 2006 20:40:25 -0000

From: " Jodi Zwain "

Subject: Re: Emerence is home

,

I am so glad that you two are home and doing relatively well. Interesting about

the

Tylenol with Codeine. We have had the same experience with Max. He used to

overreact

to meds that normally would make others sleepy. In fact, when he had the triple

procedure and was given morphine, he did not sleep, did not act strangely, was

just his

normal, maybe a little hyper self.

I know how worried you were about this procedure. I'm happy that it went

smoothly and

you can cross off another chapter in your lives.

Jodi Z

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January 8, 2006

That brings back memories. When was 18 months old the doctor prescribed

something to not so much sedate her but to relax her - yeah right. She was

having a procedure called a VCUG which is an ultrasound and catheter with

constant x-ray while they shoot dye in to see if it will back up into the

kidneys because of a UTI she had at such a young age. She was screaming the

entire time.

Then, when had her open heart surgery, the anesthesiologist asked us

about her activity level and we told her that she's the kind of kid that can

keep going and going. After the surgery he told us we were not joking. During

her surgery he had to give her more anesthesia, when they were setting her up in

the ICU unit (which they say takes about 45 minutes) he again had to give her

more because they couldn't have her fighting them when they were getting her all

set in the room. Right after they got her in the room and set in, she was awake

and within 15 minutes they were taking her off the respiratory - they were

amazed at her recovery in that sense.

These kids are way too tough.

B

and Kelli

R wrote: