Re: Question about doc response to drop of sats

February 3, 2004

Sorry I can't be of help, but I am very interested in what others

have to say about this. When Zach had his bronch they put him on a

monitor afterward. The nurse asked me what his normal " sat " was and

I said I had no idea. She looked at me like I was nuts. I didn't

know that I should know what it was. He was 93 after the procedure

and was 98 when we left. The nurse said that was ok with

his " condition " . Are saturation levels something that should be

regularly monitored? What does a low sat rate indicate?

Sara

> My daughter is almost 4 and has a long list of medical problems,

one

> of which is cf. I was wondering what the typical response of

> doctors is when a child is having desaturations. is

probably

> colonized with psuedomonas and typically sats around 95 when awake

> and 92 when asleep (although she varies quite a bit during the

> night). For almost a week she has been dropping to the low 80's

> when asleep so I have been putting her on oxygen at night and

using

> blow by during naps. When she is awake she is typically satting

89-

> 91 although sometimes a little higher or lower. Is this kind of

> change something that would get your kids' doctors very excited?

>

> Georgianna

February 3, 2004

Sara, a low sat rate means you're not getting enough oxygen at room

air. CF flare ups can lower the sat rate as more mucus is produced,

blocking/obstructing air flow. Asthma episodes also effect sat rates.

Over time, as scarred lungs worsen from repeated infections, sat

rates drop to the point where oxygen is needed 24/7. The finger

monitor they use isn't the best indicator of sat, you need to do

arterial blood gasses for that (but that's a painful, invasive

procedure). But in pinch, the finger thingie gets the job done. A 98%

sat rate for a pwcf is acceptable, especially after a surgical

procedure where general anesthesia is used.

Georgianna, you said your daughter is " probably colonized with

pseudomonas. " Hasn't the doctor told you what she's culturing? I'm

wondering what other health problems she has that would make her

doctor think an 80% sat rate is okay to leave at such a young age. Do

you feel he agressively treats her CF? It sounds like 80% is not her

normal sat rate. Any deviation is an alarm, so yes, I'd think her

doctor should be " exited. " If he isn't, you should ask " Why not? " Can

you go to another doctor for a second opinion? Is she currently on

any antibiotics?

Kim

Mom to (24 with cf and asthma) and (21 asthma no cf)

> > My daughter is almost 4 and has a long list of medical problems,

> one

> > of which is cf. I was wondering what the typical response of

> > doctors is when a child is having desaturations. is

> probably

> > colonized with psuedomonas and typically sats around 95 when

awake

> > and 92 when asleep (although she varies quite a bit during the

> > night). For almost a week she has been dropping to the low 80's

> > when asleep so I have been putting her on oxygen at night and

> using

> > blow by during naps. When she is awake she is typically satting

> 89-

> > 91 although sometimes a little higher or lower. Is this kind of

> > change something that would get your kids' doctors very excited?

> >

> > Georgianna

February 3, 2004

Georgianna,

YES! Have your daughter cultured and treated. It

sounds like an infection of some sort, and it's best

to be proactive, I've found.

When my twins first came home from the hospital,

after being in for 6 months since birth, I felt very

ill-equipped to handle or understand their disease and

the complications of having been born very premature.

As a result, I missed signs that she was in distress.

Thank God for our RN, who told me we needed to take

her to the hospital immediately. Her CO2 was way up

and she was desatting. She had to go back on the

ventilator (which just about killed me because she

had been on it for so long since birth), and treated

with IV antibiotics for pneumonia. The up side is that

she recovered and was like a different child entirely

after her hospital stay.

I learned quickly after that to keep careful watch on

their baselines, and to take immediate action whenever

they varied. Most of the time it's a false alarm,

and they're simply weathering a cold, but on occassion

it's been pa rearing its ugly head and a good course

of TOBI and cipro was required.

Don't wait for it to turn into a crisis. Get her

checked out now.

hugs and best wishes,

C

Mommy to Mick and Alli, 4 yo twins wcf

--- Georgianna Blanchard

wrote:

> My daughter is almost 4 and has a long list of

> medical problems, one

> of which is cf. I was wondering what the typical

> response of

> doctors is when a child is having desaturations.

> is probably

> colonized with psuedomonas and typically sats around

> 95 when awake

> and 92 when asleep (although she varies quite a bit

> during the

> night). For almost a week she has been dropping to

> the low 80's

> when asleep so I have been putting her on oxygen at

> night and using

> blow by during naps. When she is awake she is

> typically satting 89-

> 91 although sometimes a little higher or lower. Is

> this kind of

> change something that would get your kids' doctors

> very excited?

>

> Georgianna

>

February 3, 2004

Yes!!!! Rebekah was put in the hospital 3 years ago 5 weeks after a tune up her

stats were dropping into the low 80 " s and some even lower I can't remember

(sleep deprivation robs my memory) it is in the archives from Oct. and Nov.3

years ago.Rebekah was dx'd with Burkholder Cepacia soon after that which

explained why she was turning blue and grey around her lips and why her stats

were dropping during sleep even laying her down for diaper changes.When she was

admitted they hooked her up to the monitor she took a nap I left to pick up my

other 7 kids and got back to the hospital to find her hooked up to oxygen(our

first experience with it)that was very scary.I hope your doctor gets on it

quickly as low levels rob her other organs and make everything work harder.Best

Wishes sent. Love BeckyB.-Mama to 8-2w/cf--and Nana to 2

February 3, 2004

has cultured psuedomonas in the past but has also had some

clear cultures, even a clear culture after a bronch so I'm not sure

if that qualifies as being colonized. Her major other medical

condition is she also has Down syndrome. She is severely failure to

thrive, weighing 19.5 lbs at nearly 4 years old. She has a g-j tube

and a port-a-cath. She was diagnosed with a growth hormone

deficiency so we have started her on therapy for that, but so far

that hasn't helped with the growht issue. She had a VSD which was

repaired with open heart surgery last January. Before that she had

pulmonary hypertension but that seems to have cleared up from fixing

her heart. Oh, and after her heart surgery, her sternum didn't fuse

on the lower 1/2 - 2/3 so she now has a sternal non-union. This

could be affecting her breathing as well. It will need to be

repaired but we are hoping that she can grow some first so that

there is a bit more substance to her sternum.

I talked with pulmonary today about her change in her saturations

and we are scheduled to go to clinic on Monday unless she becomes

accutely ill. At this point, she doesn't seem sick, it is just that

her sats have dropped from where they were. They did not seem

overly concerned about the change, and I was wondering if I was just

overreacting thinking it is a big deal. It sounds like I'm not.

Her home health nurse is coming in the morning and we will talk

about what we think we should do. We have decided not to do Cipro

with her anymore because it causes such severe diarrhea with her and

she just can't stand to lose calories from that. Since she has a

port, doing IV antibiotics is not too difficult.

Georgianna and

> > > My daughter is almost 4 and has a long list of medical

problems,

> > one

> > > of which is cf. I was wondering what the typical response of

> > > doctors is when a child is having desaturations. is

> > probably

> > > colonized with psuedomonas and typically sats around 95 when

> awake

> > > and 92 when asleep (although she varies quite a bit during the

> > > night). For almost a week she has been dropping to the low

80's

> > > when asleep so I have been putting her on oxygen at night and

> > using

> > > blow by during naps. When she is awake she is typically

satting

> > 89-

> > > 91 although sometimes a little higher or lower. Is this kind

of

> > > change something that would get your kids' doctors very

excited?

> > >

> > > Georgianna

February 3, 2004

Highest hopes for ; you two obviously have your hands full; she none

the less deserves the best of care! Down's Syndrome persons are very

special and usually good natured. She will be in my meditations and hopes,

n Rojas