JD Update and Questions for you

January 26, 2007

JD was admitted to Childrens Medical Center Dallas yesterday. He is doing okay

but we noticed early and I mean very early Thursday morning that he was setting

off his vent and it was saying APNEA. This went on with about 10 different

instances between 2 am and 3 am thursday morning. JD woke up for his breathing

treatment at 4 am and was fine. He went back to sleep around 6:45 am and it

started happening again. His day nurse arrrived and I went to work. He had

several more instances of this. We noticed during some of these that JD was

actually not breathing for several seconds ( I think the longest was 14 sec and

the avg amount of time was around 7 sec before initiating a breath.) We never

saw any instances of increased heart rate or desats during these episodes. Only

after the Apnea would he go down to 88-89 and then instantaneously go back up to

mid 95 on the pulse ox. We have kind of learned not to always trust the vent and

look at him. JD is on CPAP because of tracheal malacia and a recent bout with

RSV. He had been completely weaned from the vent. as of October but had to go

back on because of the RSV and the tracheal malacia which we are trying to

figure out ( it is thought that JD might have a vascular ring but we cannot due

the mri yet because it requires sedation and anethesiologist wont do it right

now cause it is too soon from the recent RSV) JD also is requiring no oxygen.

They are planning a sleep study tonight. JD has never had any apneic episodes

since the month he was born. He had a few episodes when he was in CVICU last

september but they treated this with caffeine and the situation resolved in

October 2005 when he reached 1 month of age. Since then no other instances of

apnea or sleep apnea.

JD is trached because of choanal atresia which is thought to be membranous in

nature with a little bone.

JD has a gtube. JD has a nissen and is being treated for gerd. He has external

ear anomalies. Major heart defects (PDA, ASD, TAPVR) have been repaired. He

is 16 months old and is a twin and they were both born at 31 1/2 weeks. JD

weighed 2 lbs 7 oz at birth and now is 23 lbs and 31 inches in length. Just a

refresher for those that do not remember everything with JD. He has been

classified as CHARGE. One more thing he had a TE fistula repair at 9 hours old.

I do not think from what i know concerning sleep apnea that this is an issue

involving the brain or a central sleep apnea due to the fact that JD hasnt had

this symptoms his entire life. I am thinking this is obstructive sleep apnea

and may be related to his airway issues. JD does sometimes sleep with his mouth

open and he snores. I am wondering could the presence if it is found of a

vascular ring have anything to do with this. Or could the choanal atresia also

be playing a part in this. Those of you who have thoughts regarding this please

comment. I am just trying to learn as much as I can. I think JD is okay but it

was pretty scary the other night since we have never seen this out of him. We

got him admitted and Dr. Gelfand his pulmonologist will do a sleep study

tonight. As of last night JD rested well and had no apnea episodes at the

hospital. Now that is weird to me. He had them the night before he went in.

During the day and in ER but after we left none. Anyone that has anything or

thoughts please respond.

, , Olivia (16 months) and JD (cHArgEd 16 months)

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January 27, 2007

,

My son, Maxwell, is 19 months old and was recently diagnosed with " obstructive

sleep apnea. " It's actually quite common among " typical " people but definitely

in the CHARGE community. Often times our kiddo's narrow passageways, etc. and

other random quirks make them more likely candidates.

Max also had choanal atresia (repaired now but still narrow) and has had a

sleep study. JD's apnea sounds pretty much just like Max's....stop breathing

and then a moment later drop down. They decided to keep him on O2 at night b/c

that seems to help with the episodes. I think Eva is doing the same...

Is JD doing this even when he is on CPAP? If so, that part confuses me

because usually that helps to solve the issue...and I think that is what Evan is

using CPAP for.

Not sure if that is helpful at all...hope you get some good answers tonight at

the study.

Amy

erin32573@... wrote:

JD was admitted to Childrens Medical Center Dallas yesterday. He is

doing okay but we noticed early and I mean very early Thursday morning that he

was setting off his vent and it was saying APNEA. This went on with about 10

different instances between 2 am and 3 am thursday morning. JD woke up for his

breathing treatment at 4 am and was fine. He went back to sleep around 6:45 am

and it started happening again. His day nurse arrrived and I went to work. He

had several more instances of this. We noticed during some of these that JD was

actually not breathing for several seconds ( I think the longest was 14 sec and

the avg amount of time was around 7 sec before initiating a breath.) We never

saw any instances of increased heart rate or desats during these episodes. Only

after the Apnea would he go down to 88-89 and then instantaneously go back up to

mid 95 on the pulse ox. We have kind of learned not to always trust the vent and

look at him. JD is on CPAP because of

tracheal malacia and a recent bout with RSV. He had been completely weaned from

the vent. as of October but had to go back on because of the RSV and the

tracheal malacia which we are trying to figure out ( it is thought that JD might

have a vascular ring but we cannot due the mri yet because it requires sedation

and anethesiologist wont do it right now cause it is too soon from the recent

RSV) JD also is requiring no oxygen. They are planning a sleep study tonight. JD

has never had any apneic episodes since the month he was born. He had a few

episodes when he was in CVICU last september but they treated this with caffeine

and the situation resolved in October 2005 when he reached 1 month of age. Since

then no other instances of apnea or sleep apnea.

JD is trached because of choanal atresia which is thought to be membranous in

nature with a little bone.

JD has a gtube. JD has a nissen and is being treated for gerd. He has external

ear anomalies. Major heart defects (PDA, ASD, TAPVR) have been repaired. He is

16 months old and is a twin and they were both born at 31 1/2 weeks. JD weighed

2 lbs 7 oz at birth and now is 23 lbs and 31 inches in length. Just a refresher

for those that do not remember everything with JD. He has been classified as

CHARGE. One more thing he had a TE fistula repair at 9 hours old.

I do not think from what i know concerning sleep apnea that this is an issue

involving the brain or a central sleep apnea due to the fact that JD hasnt had

this symptoms his entire life. I am thinking this is obstructive sleep apnea and

may be related to his airway issues. JD does sometimes sleep with his mouth open

and he snores. I am wondering could the presence if it is found of a vascular

ring have anything to do with this. Or could the choanal atresia also be playing

a part in this. Those of you who have thoughts regarding this please comment. I

am just trying to learn as much as I can. I think JD is okay but it was pretty

scary the other night since we have never seen this out of him. We got him

admitted and Dr. Gelfand his pulmonologist will do a sleep study tonight. As of

last night JD rested well and had no apnea episodes at the hospital. Now that is

weird to me. He had them the night before he went in. During the day and in ER

but after we left none. Anyone that

has anything or thoughts please respond.

, , Olivia (16 months) and JD (cHArgEd 16 months)

__________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security tools,

free access to millions of high-quality videos from across the web, free AOL

Mail and more.

January 27, 2007

Hi and ,

Evan isn't trached, but he is on CPAP (via a " Mini-me " mask) at night with a

small amount (0.5 L/hr) of oxygen bled into the line.

Evan had been diagnosed with central apnea with an obstructive component as a

young infant, before he was ever released from the hospital. He was put on

caffeine and came home initially on a nasal cannula all day, eventually weaned

to only at night. We actually had weaned him down to only needing 1/32 L/hr of

oxygen at night. And then last year's RSV season came...

Evan never actually got RSV, but he did get several respiratory infections.

With each one, his oxygen needs went up and he would have more spells of low

sats during sleep. The spells seemed to progressively last longer, go down

lower (70s--pretty low for Evan), and would take longer for him to come out of.

Last July, he got really sick and was in the PICU for a week--and finally then

we got a pulmonology consult with a good pulmonologist. She put him on CPAP

full-time, and eventually weaned him back to just at night as he got better.

Evan was also put on Flovent 2x/day because he has Reactive Airway Disease,

which had contributed to his obstructive apnea. More recent studies have shown

his apnea is now all obstructive (not on caffeine any more), and it's much

better than last summer.

Evan's pulmonologist told us that it takes about 6 weeks for your airway to

recover from a bad respiratory infection...longer if there are RAD issues. So I

would think it's pretty likely that JD's airway is still swollen from his recent

RSV, and that is contributing to the obstructive apnea.

I hope you get some answers for JD

(mom to Evan, 18 months)

Amy McKinley wrote:

,

My son, Maxwell, is 19 months old and was recently diagnosed with " obstructive

sleep apnea. " It's actually quite common among " typical " people but definitely

in the CHARGE community. Often times our kiddo's narrow passageways, etc. and

other random quirks make them more likely candidates.

Max also had choanal atresia (repaired now but still narrow) and has had a sleep

study. JD's apnea sounds pretty much just like Max's....stop breathing and then

a moment later drop down. They decided to keep him on O2 at night b/c that seems

to help with the episodes. I think Eva is doing the same...

Is JD doing this even when he is on CPAP? If so, that part confuses me because

usually that helps to solve the issue...and I think that is what Evan is using

CPAP for.