A 4 year olds journey to sleep apnea

by katie

May 5, 2011

So, I am new to this group and would like to intruduce myself: my name is katie and I have 3 wonderful, active boys ages 9,7, & 4, & we live in Mobile,Al which is in the United States. The whole reason I came to this site is about my 4 year old named Andrew. He is living with Obstructive and Central sleep apnea and even though he has been diagnosed with it no doctor can tell me the one answer I want the most. WHY? I will say that they believe he will grow out of the older he gets, they say 5 to 6 years. He has been through more then any adult I know, he even stopped breathing on the operating table when he had adnoid and tonsils taken out, I had to fight two doctors who just wanted to put a trach tube in perfectly healthly (by day) little boy, he just couldn't do the most important thing he needed to do at night BREATH. Thankfully, we now drive 5 hours away to a children hospital in Birmingham, Al where we found a wonderful doctor who diagnosed him and said don't worry "I will CPAP him and he will be perferctly fine, you will just have to adjust your life alittle bit", and so, that is what we have done.Night by night I set my alarm twice a night and get up and check to see is mask on or off,if its on GREAT, mom turns around and back to bed, if mask if off YUCK mom turns on small light sits Andrew up puts the mask back together because if the mask is off you can bet Andrew has torn it all to pieces getting it off, puts mask back on and says 123 here it comes and knows the air is getting ready to come out so for comfort I guess he puts both hands on his full face mask and holds on tight. And then mom goes back to bed. My hope and dream is that one day I won't have to set the alarm clock and Andrew will sleep all night with his mask on, but until that day I am prepared to do what it takes even if for the next 5 years I have to get up 1,2, or 3 times a night. Besides, why wouldn't I do it for him, I have to be his voice and after 2 surgeries, countless 5 hour drives to the childrens hospital, numoruss doctors either tellling me nothing is wrong with him or how lucky I am that he is even alive and that he shouldn't be here,not to mention he has Left Ventricular Hyertriphy on his heart that was caused by his sleep apnea and that the CPAP will stop.

I am so happy I found this group because unless you have a child with sleep apnea then you really can't understand what I am going through, so many people don't even know that Andrew has it because to him in the day he looks and acts perfectly normal, I'm the one that looks like somethings wrong from not getting a full nights sleep.

  • Kath Hope

    Thanks for your story Katie, and we're glad you found us too.  Just as we adults like the support of each other, so it goes without saying that you parents do too!  It's a hard job you have putting the masks on your little ones too, as it's always easier to put it on yourself.  Maybe this forum is a place we can attract more parents to, as like you say, it feels lonely.  Having said that, there must be 1000's and 1000's of youngsters out there struggling with their sleep as their parents don't know the signs to look out for.  Your children are very lucky!

    By the way, you're 6 hours behind us - I know this as my newest supplier for the Hope2Sleep sales shop is from Alexander City in Alabama - a lovely guy who runs his own sleep clinic out there.

    May 5, 2011

  • carol murphy

    Hi Katie thank you so much for posting your story about your son Andrew.... your story is similar to mine in that I have a 3.5 yr old called Travis who had Obstructive and Central apnea since the day he was born I would lie awake watching his breathing and when I did eventually sleep I would often be woken by his apnea alarm this went on until December last year when he was 3 years old and we finally found out what caused him to obstruct so badly he has Laryngomalacia ( a floppy larynx which collapses into his airway when he breaths in) they operated on this with Lazer treatment and  He also had his tonsils and adenoids removed to allow as much room in his upper airway as possible he was obstructing so badly he retained CO2. To watch your child struggle to breath at a time when they are meant to be resting in sleep is hard and like you we were told so many times that he looked great during the day my slogan was " Its only when he sleeps" ..... when someone doesnt see something they often dont believe it . Your story is also like mine in the view that we were told a Trachy was in the near future if Travis continues to fail to thrive they think he burns of too many caloried when working to breath at night however we have educated ourselves and found a doctor willing to at least let us try CPAP first if he needs it . The drs view was alot of children do not tolerate it however my view is you dont know until you try and every child is different . I hope that Andrew adjusts to Cpap so you can at least get a few nights of restful sleep though the odd night this happens with me I feel awful almost like I have a hangover probably as my body is in shock from sleeping more than a few hours :) How long has Andrew been using cpap for ? Have you noticed an improvement in Andrew even subtle ones.  Look forward to sharing your journey and being here if you need to vent x

    May 5, 2011