Re: Asher's in the hospital/ 02 question

January 19, 2005

Ann, i too was pondering the O2 question.. i would ask the Dr. at the

hospital. We have o2 at home for use as needed. Hailee also does really good

during

the day and drops at night, which is normal..to a degree.

Hailee is sick with a head cold and i just checked her and she is 84, so i

dont know if i should hook her up, im not comfortable with it..

Good luck

January 19, 2005

Ann, i too was pondering the O2 question.. i would ask the Dr. at the

hospital. We have o2 at home for use as needed. Hailee also does really good

during

the day and drops at night, which is normal..to a degree.

Hailee is sick with a head cold and i just checked her and she is 84, so i

dont know if i should hook her up, im not comfortable with it..

Good luck

January 19, 2005

Hi,

We have oxygen in our house and I'm a nurse at a hospital. I will tell you that

normal sats are 95% and above. They are usually not treated until they reach

below 92- 93%. Medicare guidelines usually rule . Most insurance

companies follow these guidelines. In order for medicare (not medicaid, but

usually is the same) to cover oxygen, sats must be 88% or below. You can

ask your insurance company about their requirements.

The flu shot works only for influenza, not what we commonly call the flu. What

we commonly call the flu is a stomach virus. The real flu, or influenza, is a

respiratory disease. They should be able to tell you if that is what Asher has.

I

would expect that the ED took a nasal swab to check for both RSV and

influenza. Results of both are usually back in about five minutes, give or take.

Diarrhea is not usually associated with the flu for which we can be

vaccinated. Respiratory symptoms along with body aches seem to go with

influenza.

January 19, 2005

I dont know what the guide lines are but someone in here mentioned them. I do know how ever that when we were hospitalized, zachs stats at the dr.s were 83% if i didnt bring him in because my mom told me to for a precaution, We probably woulda been in big trouble. The hospitals wont take the child off of o2 if their stats arent stable at 94 % w/o o2. That is what i was told. Zach was on o2 for 3 days and neb treatments round the clock. Once his fever broke, holy cow zach on neb meds , loco boy:). Zachs normal o2 fluxuates mostly between 94 + % mostly 94 and 95. O2 is a big issue w/ us. Thats where most of our problems derive from. We see a pulmo because of it. I wish ur child makes a speedy recovery and is in our prayers.

mom to zach 4 , ga2 , alexis 6 __________________________________________________

January 19, 2005

I dont know what the guide lines are but someone in here mentioned them. I do know how ever that when we were hospitalized, zachs stats at the dr.s were 83% if i didnt bring him in because my mom told me to for a precaution, We probably woulda been in big trouble. The hospitals wont take the child off of o2 if their stats arent stable at 94 % w/o o2. That is what i was told. Zach was on o2 for 3 days and neb treatments round the clock. Once his fever broke, holy cow zach on neb meds , loco boy:). Zachs normal o2 fluxuates mostly between 94 + % mostly 94 and 95. O2 is a big issue w/ us. Thats where most of our problems derive from. We see a pulmo because of it. I wish ur child makes a speedy recovery and is in our prayers.

mom to zach 4 , ga2 , alexis 6 __________________________________________________

January 19, 2005

-Hi Anne,

had a sleep study last year that showed that her O2 sats kept

going low during the night. She didn't show signs of obstructive

sleep apnea and she didn't wake up when she desatted (sats in low

80's for up to 20 minutes and CO2 levels 55-57). I have a friend

whose daughter had 20 episodes of obstructive apnea an hour and her

daughter wasn't put on oxygen. She had her tonsils out.

is on low flow oxygen to keep her sats above 92. When she's

sick or stressed we keep them above 95. We can't give her more than

2 liters of O2 because then her CO2 goes up too high. She also

desats when she's moving around or when she has a seizure. We just

started giving her 1/2 liter of O2 whenever she's out of her

wheelchair. will be having another sleep study to find out

if she has some obstructive sleep apnea. We also need to find out if

her CO2 is going too high again. If it is then she'll need some

pressure support as she sleeps. Also, we found out that 's

sats are better when she is getting 2 times maintenance fluids (twice

as much as usual for her weight). And if she's not terribly anemic

either. She has severe dysautonomia from kidney disease and vascular

problems and we spend a lot of time keeping her fluids and

electrolytes in check.

I would suggest that you consult a pulmonologist who is familiar with

mito. It seems like the general thought is that if kids are sick and

running low sats then they won't move around as much and that once

they start playing then we can assume that everything is back to

normal. That just isn't the case with mito kids. doesn't

always turn blue if her sats are low. And when she's anemic or dry

she looks a little blue even if her sats are fine. We mainly go by

her breathing and heart rate. We monitor her sats overnight but it's

impossible to get a good reading if she is moving the slightest bit.

False lows are common with just about any pulse ox monitor.

I guess the most important part would be to look at all his vital

signs (pulse, temp, resp rate, BP, O2 sat) and figure out what they

look like when he's feeling well as opposed to feeling lousy. Home

O2 may very well help, but it might not be fixing the main problem.

Is there a way you could keep track of his vitals at home for several

weeks and then bring this data back to the MD? Maybe the O2 sats are

only the tip of the iceberg and you could be covering up an even more

worrisome problem.

This must be scary for you. I hope that Asher is feeling better real

soon and that you can get some of these issues under control. Where

do you live? I'd be happy to let you know who we see for 's

O2 sat problems.

Take care

Heidi, 's Mom

www.caringbridge.org/ma/heather

January 19, 2005

-Hi Anne,

had a sleep study last year that showed that her O2 sats kept

going low during the night. She didn't show signs of obstructive

sleep apnea and she didn't wake up when she desatted (sats in low

80's for up to 20 minutes and CO2 levels 55-57). I have a friend

whose daughter had 20 episodes of obstructive apnea an hour and her

daughter wasn't put on oxygen. She had her tonsils out.

is on low flow oxygen to keep her sats above 92. When she's

sick or stressed we keep them above 95. We can't give her more than

2 liters of O2 because then her CO2 goes up too high. She also

desats when she's moving around or when she has a seizure. We just

started giving her 1/2 liter of O2 whenever she's out of her

wheelchair. will be having another sleep study to find out

if she has some obstructive sleep apnea. We also need to find out if

her CO2 is going too high again. If it is then she'll need some

pressure support as she sleeps. Also, we found out that 's

sats are better when she is getting 2 times maintenance fluids (twice

as much as usual for her weight). And if she's not terribly anemic

either. She has severe dysautonomia from kidney disease and vascular

problems and we spend a lot of time keeping her fluids and

electrolytes in check.

I would suggest that you consult a pulmonologist who is familiar with

mito. It seems like the general thought is that if kids are sick and

running low sats then they won't move around as much and that once

they start playing then we can assume that everything is back to

normal. That just isn't the case with mito kids. doesn't

always turn blue if her sats are low. And when she's anemic or dry

she looks a little blue even if her sats are fine. We mainly go by

her breathing and heart rate. We monitor her sats overnight but it's

impossible to get a good reading if she is moving the slightest bit.

False lows are common with just about any pulse ox monitor.

I guess the most important part would be to look at all his vital

signs (pulse, temp, resp rate, BP, O2 sat) and figure out what they

look like when he's feeling well as opposed to feeling lousy. Home

O2 may very well help, but it might not be fixing the main problem.

Is there a way you could keep track of his vitals at home for several

weeks and then bring this data back to the MD? Maybe the O2 sats are

only the tip of the iceberg and you could be covering up an even more

worrisome problem.

This must be scary for you. I hope that Asher is feeling better real

soon and that you can get some of these issues under control. Where

do you live? I'd be happy to let you know who we see for 's

O2 sat problems.

Take care

Heidi, 's Mom

www.caringbridge.org/ma/heather

January 19, 2005

they admitted zach at 83% just to let u know and we were in the hospital for 3 days. You dont want to let it go to the point where the tongue is turning blue. That is what i was told, look for the tongue, the nose, the lips, the tips of fingers. Discoloring is a sign they're not getting enough air, which u want to avoid. I would call ur dr.s if u have any concerns. Second guessing in these cases can make the situation lots worse. Not saying to be paranoid, but u dont want to deal w/ any precautions. Also try the thumb for the o2 meter. Sometimes trying diff fingers may have diff readings , or if their fingers are cold.

mom to zach 4, ga2 alexis 6Angels4hailee@... wrote:

Ann, i too was pondering the O2 question.. i would ask the Dr. at the hospital. We have o2 at home for use as needed. Hailee also does really good during the day and drops at night, which is normal..to a degree.Hailee is sick with a head cold and i just checked her and she is 84, so i dont know if i should hook her up, im not comfortable with it..Good luckPlease contact mito-owner with any problems or questions. __________________________________________________

January 19, 2005

they admitted zach at 83% just to let u know and we were in the hospital for 3 days. You dont want to let it go to the point where the tongue is turning blue. That is what i was told, look for the tongue, the nose, the lips, the tips of fingers. Discoloring is a sign they're not getting enough air, which u want to avoid. I would call ur dr.s if u have any concerns. Second guessing in these cases can make the situation lots worse. Not saying to be paranoid, but u dont want to deal w/ any precautions. Also try the thumb for the o2 meter. Sometimes trying diff fingers may have diff readings , or if their fingers are cold.

mom to zach 4, ga2 alexis 6Angels4hailee@... wrote:

Ann, i too was pondering the O2 question.. i would ask the Dr. at the hospital. We have o2 at home for use as needed. Hailee also does really good during the day and drops at night, which is normal..to a degree.Hailee is sick with a head cold and i just checked her and she is 84, so i dont know if i should hook her up, im not comfortable with it..Good luckPlease contact mito-owner with any problems or questions. __________________________________________________

January 20, 2005

> Hailee is sick with a head cold and i just checked her and she is 84, so i

> dont know if i should hook her up, im not comfortable with it..

There is no question about it. If Hailee has sats of 84%, she needs enough

oxgyen to bring them up. If we could not get those sats up while in the

hospital, we'd send them to ICU. You need to ask your doc for parameters.

Ours are to use enough oxygen to keep sats at or above 93%.

January 20, 2005

> Hailee is sick with a head cold and i just checked her and she is 84, so i

> dont know if i should hook her up, im not comfortable with it..

There is no question about it. If Hailee has sats of 84%, she needs enough

oxgyen to bring them up. If we could not get those sats up while in the

hospital, we'd send them to ICU. You need to ask your doc for parameters.

Ours are to use enough oxygen to keep sats at or above 93%.

January 20, 2005

We try to keep our girls' sats above 94-95 as well as below that they are

susceptible toward the stroke episodes. Zipporrah has had drops into the

low 80's many times and as long at it comes up quickly once her breathing is

normalized we don't treat with the oxygen, but if they are low often, oxygen

is a must for them. I hope things get better your way.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Re: Asher's in the hospital/ 02 question

>

> -Hi Anne,

> had a sleep study last year that showed that her O2 sats kept

> going low during the night. She didn't show signs of obstructive

> sleep apnea and she didn't wake up when she desatted (sats in low

> 80's for up to 20 minutes and CO2 levels 55-57). I have a friend

> whose daughter had 20 episodes of obstructive apnea an hour and her

> daughter wasn't put on oxygen. She had her tonsils out.

> is on low flow oxygen to keep her sats above 92. When she's

> sick or stressed we keep them above 95. We can't give her more than

> 2 liters of O2 because then her CO2 goes up too high. She also

> desats when she's moving around or when she has a seizure. We just

> started giving her 1/2 liter of O2 whenever she's out of her

> wheelchair. will be having another sleep study to find out

> if she has some obstructive sleep apnea. We also need to find out if

> her CO2 is going too high again. If it is then she'll need some

> pressure support as she sleeps. Also, we found out that 's

> sats are better when she is getting 2 times maintenance fluids (twice

> as much as usual for her weight). And if she's not terribly anemic

> either. She has severe dysautonomia from kidney disease and vascular

> problems and we spend a lot of time keeping her fluids and

> electrolytes in check.

>

> I would suggest that you consult a pulmonologist who is familiar with

> mito. It seems like the general thought is that if kids are sick and

> running low sats then they won't move around as much and that once

> they start playing then we can assume that everything is back to

> normal. That just isn't the case with mito kids. doesn't

> always turn blue if her sats are low. And when she's anemic or dry

> she looks a little blue even if her sats are fine. We mainly go by

> her breathing and heart rate. We monitor her sats overnight but it's

> impossible to get a good reading if she is moving the slightest bit.

> False lows are common with just about any pulse ox monitor.

>

> I guess the most important part would be to look at all his vital

> signs (pulse, temp, resp rate, BP, O2 sat) and figure out what they

> look like when he's feeling well as opposed to feeling lousy. Home

> O2 may very well help, but it might not be fixing the main problem.

> Is there a way you could keep track of his vitals at home for several

> weeks and then bring this data back to the MD? Maybe the O2 sats are

> only the tip of the iceberg and you could be covering up an even more

> worrisome problem.

>

> This must be scary for you. I hope that Asher is feeling better real

> soon and that you can get some of these issues under control. Where

> do you live? I'd be happy to let you know who we see for 's

> O2 sat problems.

>

> Take care

> Heidi, 's Mom

> www.caringbridge.org/ma/heather

>

> Please contact mito-owner with any problems or questions.

>

January 20, 2005