[tri-med] Re: To fundo or ot to fundo?

----- Original Message ----- 
From: "Ann Ekis"
>>He is worried that Michelle
> might not come off the ventilator if we use general anthesia.  I thought
> that intubate means to put on the ventilator?  Did Joanne use O2 before
the
> surgery?  It seems the more I learn, the more questions I have. Has anyone
> else have troubles with general anthesia? Conscious sedation?

Anaesthetics are always a concern for our kids - but the good news is that
despite our anxieties very few actually have problems.

Alex is considered a major anaesthetic risk because he has central apneas.
We always have deep and meaningfuls with the anaethetist beforehand and he
has only ever had a problem once and that was before we knew about the T-18.
(and the only time we didn't have a deep and meaningful discussion because
they expected him to breeze through)

The surgery in question was when he had his tonsils, adenoids and uvula
removed, he just didn't want to come out of the anaesthetic and he needed a
bit of stimulation. But once they got him out he was totally fine.

The anaethetists are usually a bit nervous with him - so we tend to go with
the same anaethetist we have used before. If we can't we get them to talk
with each other beforehand. The main precautions that they take are to
monitor him closely, and to keep the anaesthetic as light as possible. They
avoid the use of narcotics (eg morphine) not because it depresses his
breathing but because it makes him hypertensive, hyperventilate, tachycardic
etc etc. Alex has what they term a paradoxical reaction to narcotics (all
pain killers actually - even paracetamol - tylenol in the US). Thankfully he
usually doesn't need much anyway because he has an altered perception to
pain.

Where possible they also use spinal blocks. When Alex had his g-tube, fundo
and gut repair they used a high spinal block to keep the need for
anaesthetic low and so he wouldn't need much pain relief afterwards. They
did the same when he had his hernia repair at 3 weeks of age. With his
pacemaker surgery they bathed the surgical wound with local anaesthetic
before stitching him up.

Intubation is what they do to just about everyone when they have surgery.
Its exactly what it sounds like - tube - in. Intubation can actually occur
with any body orifice (eg urinary, rectal etc) but normally when people talk
about intubation they mean putting a tube in the airway. Intubation is done
to keep the airway patent (open and clear) to allow them to deliver the
anaesthetic gases and oxygen mixes. The person is usually still breathing on
their own. If they don't put a tube in the trachea can collapse on itself
creating an obstruction, the tongue can fall back etc etc. Intubation can be
through the mouth or through the nose (not an option for Alex because he has
almost no airway through his nose - its called choanal stenosis)

Alex has had 3 or 4 cardiac arrests now and after the last major one they
taught me how to intubate Alex at home to ensure that he had a patent airway
while I was resuscitating him. Once the tube is in I can make sure that he
gets air anyway its needed. That may be by himself, just with attaching the
O2 tubing to a mask and placing it over. Or if need be I can hook the Bi-PAP
up to it. Alex actually spits the tube out himself as soon as he regains a
certain level of consciousness.

Bi-PAP is sort of a simple home version of a ventilator. The thing about a
ventilator is that it actually takes over the work of breathing for the
person. So you can definitely be intubated without being ventilated. They
don't always ventilate during surgery but they usually have to with
abdominal surgery because they end up pushing and pulling on the diaphragm
hindering a persons ability to breathe efficiently on their own.

Half the time they don't bother mentioning it to the families but they do
with our kids because there is the risk that they may not start breathing on
their own again. They are in fact giving us time to think about what we
would like to do if that does happen.

Its a theoretical risk though and in actuality most don't have a problem -
even the master. He has always ended up being unventilated and extubated by
the time he gets out of theatre - always. His longest surgery was his
pacemaker. That should have been 2 hours but ended up being 7 because of a
hospital stuff up. He was intubated for the 7 hours and ventilated for 2
with no problems being weaned off the vent and being extubated before he
left theatre. I was prepared for the possibility he may have come out with a
vent (small chance) and or still intubated (high chance) - he had neither.

The stuff up by the way was the fact that they had Alex scheduled for first
surgery of the day (pacemakers are usually middle of the day) because of his
latex allergy and the fact that he can't fast because of hypoglycemia. I
went in with Alex at 7.30 and stayed with him while he was put out with gas
and while they intubated him. So he was out and ready by 8am but the
pacemaker wasn't in the hospital. The medical supply company reckon they
didn't know he was first up and were bringing it over that morning (dumb,
dumb, dumb) and then they got caught in peak hour traffic. So Alex lay
prepped on the table while they waited for his pacemaker to arrive. There
were a heck of a lot of angry people that day because it delayed everyones
surgery.

Very few of our tri-ers have had problems with general anaesthetics (off
hand I cant think of any but I am sure someone will jog my memory) and even
less end up being ventilated for long periods. I know a few who were
ventilated for a few days or weeks after birth. Some parents though opt for
no ventilation - its a choice some families need to make.

I think we have had 3 kids (actually I know that there were more but these
are the three I can think of off the top of my head) on the list who were on
vents for any length of time. Two ended up being vented because of problems
that occurred during surgery - not because of the anaesthetic. Both were
cardiac surgeries - way more risky than what you are considering. Both
stayed vent dependent until their death from other factors. Another was
vented a few days after birth for a week or so (because of apneas). She was
successfully weaned with no great drama.

As Chris mentioned Jo is/was also a big medical and ventilation risk. It
heartens me no end that Miss Jo can make it through surgery such as she had
with no major issues. I don't think Cuz would mind me saying (because you
haven't met Jo) that while Jo is a real sweetie and the apple of my eye, she
is also prehaps one of the most fragile and dependent T-18'ers out there.
Why will probably stay a mystery though I know Chris has a few
thoughts/theories. Because of that Chris had very grave and valid concerns
regarding surgery - but as she posted Miss Jo breezed through (mum and dad
didn't :-))

But stuff does happen - ask Mary (mum to Ryan) even when it shouldn't - its
part of the roller coaster we never really know when to start screaming.

Conscious sedation - thats usually a drug called Versed in the US and
Midazolam here in Australia. I keep Midazolam with me at all times bcause we
use it with Alex when he has a Shapiro's crisis.

Versed is part of the benzodiazepine family (valium, lorazepam etc) The big
difference between Versed and the others is that benzo's normally depress a
person breathing, heart rate etc. Versed however doesn't have this effect.
Its called conscious sedation because you can give Versed to a person, they
become very relaxed and "drunk", but they don't lose consciousness. You can
do whatever you like to them but when the Versed wears off they will have
little or no memory of what happened. (Thats why its a highly restricted
drug but loved by the not so nice folk of the world eg date rapers and drug
addicts)

The other pluses for Versed is that it has a very short half life - meaning
that it wears off very quickly. Actually it works for about 30 minutes. It
is also a drug that can be reversed very quickly if something goes wrong. A
dose of narcan reverses its effects in seconds. (our other drug of choice
during a Shapiro's crisis has a half life of 10 hours with no antidote - 36
hours is a long time to ride it out if something goes wrong - and it has)

Versed is used for procedures like bronchoscopies etc when they need someone
relaxed and co-operative to swallow the tube but when they don't want them
to remember how awful it feels afterwards. Its probably more commonly used
here than in the US for sedation. In the US they still use a lot of chloryl
hydrate for sedation whereas chloryl is rarely used here anymore. (Its not
even in my MIMS anymore) Jude has a good anti-chloryl story if ever you
want.

For some people Versed doesn't work though - especially for people who have
a narcotic or benzo tolerence (eg drug addicts, people who take valium etc).

I love Versed as you can tell. Its saved Alex's life a few times.

I hope that my ramble has helped a little in understanding all this. It is a
hard call to make, and there are no right or wrong answers. My only advice
is to listen to your gut. Remember too that doctors are scared of our kids
simply because they are unfamiliar with them. They expect them to be really
fragile and for everything to go wrong. In reality they are tough little
beggars though and provided they are prepared for it to go wrong most of the
time they wont need it.

Talk it over with cardiologist again - is he worried about her not being
able to come off the vent because of her heart issues or because of the
T-18? If its the T-18 ask him why because as I said most don't have a
problem and it may be because he is afraid rather than because he has any
direct experience. I don't blame him for being scared though - I would
rather have a doctor who is healthily respectful of what can go wrong than a
complacent and arrogant doctor any day.

I am often asked by parents what I would do - and the bottom line is I don't
know. We deal with things as they happen in this house. My basic philosophy
these days though is that we do everything thats possible and then weigh up
problems if and when they occur. I have no desire to see Alex on a
ventilator permanently and if he were to suffer so much brain injury to
require a vent and there was little or no chance of recovery I would
probably make the decision to switch it off. But a lot of that is based on a
comparison of what his life is now (pretty much a typical 8 year old) to
what it would be.

But its not a hard and fast rule. The only rule that is hard and fast is
that we do what is needed and then weigh up the issues in the calm and
rational light of day.

I opted for the g-tube, fundo and gut surgery because of the risks of not
doing it and because of his quality of life if we hadn't (and mine - selfish
maybe but thats the reality. This mum couldn't face a lifetime of spending 8
hours a day feeding the kid only to have him throw it all up at me). At the
time I hated myself afterwards, but in hindsight I am glad we did it. Plus
the surgeons probably only did it because they didn't know he had T-18. (he
had a CHARGE diagnosis at that point not T-18)

Oh and one last thought - I always arrange with the anaethetist to get 20
minute updates while he is in theatre. Usually they just get one of the
scrub nurses to come out and let me know everything is OK. The anaethetist
did phone me from theatre though when they stuffed up during his pacemaker
implant. (at least he told me that they had stuffed up and I know he stayed
with him as we agreed) All his anaetheists are more than happy to do that
when I ask. Think they are more scared of the mother from hell flipping out
in the waiting room :-))) Sometimes it pays to have a reputation :-)))

We can not change the wind. But we can change the sails.
~Ghandi~

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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