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Anyone who has children with Apnea ?
Hi
I have a 3 year old and a 16mth old who have apnea My 3 year old is waiting for a PSG following tonsil adenoid and supraglottoplasty procedure in December .... my 16mth old is now looking at the same procedure as his last sleep study using a nellcor home machine showed his desaturations and time below 89% has increased since his supraglottoplasty last May .
Information is very limited as at present we are dealing with Paediatrics and Ent I have so many questions left unanswered
My 3 year old is looking at CPAP as the next line of treatment depending on his psg results does anyone have any experience of a child this age tolerating it ?
Thanks
Carol
Views: 202
Replies to This Discussion
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Permalink Reply by carol murphy on
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Wow we have had a rough fortnight with Jaydon he had a sickness bug and now has tonsillitis :( sorry for the long overdue reply Rachel
How are things with you >
Sounds like the CPAP has been a blessing when you said the look of help me on his face I have seen that look at its awful isnt it
Travis is 3.5 hes Failure to Thrive he is 93cm and weighs 12kg we were back at dieticians this week and given neocate Active to try for extra calories its the last ditch attempt before the NG tube.
We have Travis for a PSG on the 25th so we hope that we get some answers
We saw Ent and Travis still has slight airway collapse from the Laryngomalacia but they feel its alittle early to expect huge changes as he was so poorly for so long
When are you back at the Nottingham Cleft Team ?
Keep in touch
Carolx
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Permalink Reply by Rachel Dickinson on
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I hope Jaydon is gettin better poor little thing. We are all ok, emils been put forward for the community nursing teams respite service so hopefully I can get a bit of help wen I'm attending appointments for the other kids. I hope you can avoid the ng really hoping you can get some calories in him.
We aren't back at nottingham until July but that could change as the resp is now happy for them to go ahead and repair it!
Emil had an overnight trace on monday and it was much improved! Next step is for the pct here to buy him a machine as his is a Loan machine from the Childrens!
Hope ur all well
Rachel
How long ave they given him the drinks for before the ng will go in?
carol murphy said:Wow we have had a rough fortnight with Jaydon he had a sickness bug and now has tonsillitis :( sorry for the long overdue reply Rachel
How are things with you >
Sounds like the CPAP has been a blessing when you said the look of help me on his face I have seen that look at its awful isnt it
Travis is 3.5 hes Failure to Thrive he is 93cm and weighs 12kg we were back at dieticians this week and given neocate Active to try for extra calories its the last ditch attempt before the NG tube.
We have Travis for a PSG on the 25th so we hope that we get some answers
We saw Ent and Travis still has slight airway collapse from the Laryngomalacia but they feel its alittle early to expect huge changes as he was so poorly for so long
When are you back at the Nottingham Cleft Team ?
Keep in touch
Carolx
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Hi Rachel
Today was much better think the antibiotics are working... I hope you get some decent hours out of community nurses ours here are not very forthcoming with help and it sucks my Nephew has a Trach and the hurdles they have to jump for things they are intitled to is insane.
If you arent happy with what they offer you keep pushing sometimes sadly its the only way
We ar eto get bloods done so I recon a few weeks maybe if nothin in blood work and no improvement in weight it will happen Im so tired of it now we have been on a watch and wait for almost 2 years he needs better and to be able to do what a child his age is meant to do and if NG will give him energy to do it then I am for it
Thats positive that they are going to do the repair though its sad he has to go through more surgery
Glad Emils trace showed improvement :)
Hope the PCT dont take to long to get him his machine
Keep me posted on how you and your little ones are wont you
x
We aren't back at nottingham until July but that could change as the resp is now happy for them to go ahead and repair it!
Emil had an overnight trace on monday and it was much improved! Next step is for the pct here to buy him a machine as his is a Loan machine from the Childrens!
Hope ur all well
Rachel
How long ave they given him the drinks for before the ng will go in?
carol murphy said:Wow we have had a rough fortnight with Jaydon he had a sickness bug and now has tonsillitis :( sorry for the long overdue reply Rachel
How are things with you >
Sounds like the CPAP has been a blessing when you said the look of help me on his face I have seen that look at its awful isnt it
Travis is 3.5 hes Failure to Thrive he is 93cm and weighs 12kg we were back at dieticians this week and given neocate Active to try for extra calories its the last ditch attempt before the NG tube.
We have Travis for a PSG on the 25th so we hope that we get some answers
We saw Ent and Travis still has slight airway collapse from the Laryngomalacia but they feel its alittle early to expect huge changes as he was so poorly for so long
When are you back at the Nottingham Cleft Team ?
Keep in touch
Carolx
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