[tri-med] Re: Pulse Monitor

----- Original Message ----- 
From: "Yazmin castro"
> Hello everyone,
>   Does anyone have a Monitor that reads the the child's oxygen and heart 
> rate? I would love to buy it from you if it's not being used.

Yasmin,

My first question is to ask why you are wanting a pulse oximeter? Do you 
suspect apneas? Or does your little one have a heart condition?

Technically a pulse oximeter (which is what I think you are after) is 
considered a medical item that requires a prescription from your doctor.
Additionally they are high tech and require regular servicing and 
calibrating from specialised professionals plus they use "disposable" items 
such as leads and wraps that are expensive and need to be replaced fairly 
frequently.

So what I am saying is that you really need the support of a medical supply 
company and legally a prescription from your doctor. Anyone that supplies 
one second hand without that prescription is technically breaking the law. 
(like sharing prescription drugs) and leaving themselves open to prosecution 
if the machine fails or even if you don't know how to use it properly.

You also need the support from your doctor to interpret the readings. 
Depending on whats going on a saturation of 90% can be normal or it can be a 
sign of problems. Same with heart rates. Normal can vary widely.

That said I heartily recommend them for ALL our families. You can buy apnea 
monitors from baby shops these days and they serve a purpose but they are 
not enough for our kids. A pulse oximeter is much better.

Children with a trisomy diagnosis are at a much higher risk of suffering 
apneas, both obstructive and central apneas, both of which occur more 
frequently during sleep. They are the "silent killers" of our children. They 
only need to experience one apnea for it to kill. (an apnea is the absence 
of breathing for 15 or more seconds - so not long). The signs of apneas can 
be very subtle until they become deadly.

I remember back to the fight I had to have Alex diagnosed with apneas (took 
12 months in all) despite his needing to be resuscitated a number of times. 
When we finally got passed the pediatrician to the sleep doctor he wanted to 
know why it took so long to get to him!!! I also look back with horror at 
the fact that one of the very first things I was sent regarding trisomy from 
a SOFT mum was a tape from conference. It was all about apneas and the 
higher risk in tri-ers by a doctor from Duke University. I was lucky enough 
to finally meet him here in Australia a few years later - he got a HUGE hug 
believe me!!!

Apneas are so common in our kids that I believe that they should ALL have 
sleep studies and be monitored, at least for the first couple of years. Most 
apneas can be treated but you can't treat them if you don't know that they 
are there. Eventually most of our kids do grow out of them. (some like Alex 
don't)

Very few parents watch their child all night (a practice I would strongly 
discourage for your own mental health) to see the subtle and early signs of 
apnea. (blue tinging, pale skin etc usually) . Very few parents are well 
versed enough to see the signs of obstructive apnea at all (the signs of 
apnea in a child whose chest is still moving).

A pulse oximeter gives you that early warning that your child needs to be 
checked. They are a machine, and a machine is fallible, they do give false 
alarms a lot. However they are an aid and an early warning system that 
something is not quite right and you need to do that check personally. I 
feel that they are better than apnea alarms because an apnea alarm only 
tells you that your child has stopped breathing - that is that there is no 
chest movement. As a result they don't give you enough time and they 
certainly don't tell you about obstructive apneas becuse in that case there 
chest is still moving but they are not getting any air.

When Alex was a baby I was actively discouraged from using any sort of 
monitor, apnea or otherwise. The doctor told me that I would only obsess and 
worry, get no sleep, that I was better than a machine etc etc. When Alex was 
only a few weeks old and in hospital once he was regularly dropping his 
saturations to the 70's, (quite dangerous) I asked the doctor if we should 
be doing anything and he said yes, turn the monitor off so you aren't aware. 
And thats exactly what he did!!! When I asked him years later why he did 
that he told me that if a the breathing of a baby that young, was that bad, 
he was probably going to die anyway and it was better for it to happen 
sooner while he was asleep. (Yep he gets a birthday card from Alex every 
year!!)

Alex stayed alive because I refused to sleep. The first time he had a severe 
apnea I was lucky because I walked in as it was happening. Even so it was 
still very difficult to resuscitate him. (His trachea had collapsed, low 
tone, and when that happens it "sticks" to itself and it can be hard to 
"unstick", amongst other things). From that time on he slept in my arms or 
on my chest so that I could "feel" and "hear" if he stopped breathing. My 
family and I took turns in nursing him 24 hours a day.

Finally we got a monitor after we proved the apneas to the doctors (major 
fight). After a number of very close calls we got a pulse oximeter instead 
and we wouldnt be without it. Very bluntly Alex would have died a dozen 
times without me getting that early warning that his oxygen levels were 
dropping. At the very least he would have suffered a heck of a lot of brain 
damage.

I do have a "spare" monitor at the moment that I could share. Its not a 
straight pulse oximeter, rather its one of those monitors that you see in 
ICU that does everything, blood pressure, cardiac trace, temperature etc 
etc. Its heavy so the postage would be really high. It is working fine but 
the rechargable battery is dead (works fine on mains power but I need the 
battery component so we can take it with us). Aus power is different to US 
power (we use AC you use DC) so you would need to check with Nellcor whether 
you can simply switch the plug (easy enough and I think thats all that needs 
to happen. The power cord is the same as for my computer) or if something 
else needs to be modified. Additionally they will tell you that the parts 
(leads etc) are unavailable, however the leads on Alex's new machine fit it 
just fine. It even prints out all the readings. This spare one cost us 
$18,000 (Aus) 6 years ago, his new one was a bargain at $11,000.

A regular old pulse oximeter is a lot cheaper. Currently (here in Aus) they 
are around $3,000 for a portable one, $5,000 for a table top. My spare I 
gave to someone else years ago. Not sure if it even still works!!

So please tell us why you are thinking of getting an pulse oximeter and how 
we can help you either get one or at the very least reassure you. There are 
many of our children on the list using them in some shape or form.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 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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