Just a quick update - first thank you for all your support and prayers, our son is making slow but steady progress.
He is still in intensive care and is now breathing on his own during the day, but it would now appear that he has central sleep apnea, ie. he stops breathing when he goes to sleep - not because of an airways blockage but because the messages to keep breathing given by the brainstem shut down once he is asleep.
My understanding is that there are ways to control this, Cpap asp and Bipap - basically being ventilated over night.
My question: Is there anyone else who has central sleep apnea, if yes how do you control it? Do you have a tracheostomy? Are you vented overnight or on some form of medication that stimulates the brainstem to remember to send messages to breathe?
Ok! Thats more than one question - I know!
This is only just coming to light, the realisation that our son cannot help 'not' breathing at night, so yes I do have a lot of questions for the doctors concerned and yes I will be asking them! But, I also appreciate first hand knowledge from someone who is living with central sleep apnea.
As for speaking, he has been fitted with a special tracheostomy tube which could enable him to speak whilst the cuff which holds it in place is still up. As yet he hasn't managed to produce a sound, but we live in the hope that with time, this will change.
So slow steady progress, little steps forward - it is all we can hope and pray for.
Thank you.
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Update with a question....regarding central sleep apnea?
- By Myway
- Posted October 30, 2009 at 4:33 am · 3 replies
- In Finding emotional support
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- By lifeandhope
- Posted October 31, 2009 at 9:21 am
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Your son is experiencing almost exactly what my Dad experienced a year ago after his brain stem surgery. My Dad died a year ago on the 18th of November. Dad had renal cell carcinoma, which was the thing the ultimately took his life. He never had the sleep apnea, but he experienced everything else you describe regarding your son. The thing that goes in the trach will help your son be able to talk--my Dad was able to talk a little the last few weeks of his life. My Dad started on a ventilator and eventually got off of it.
I am so sorry for what you are going through. There is hope and I will pray for your son. This disease is just awful and I am so very sorry for your suffering and your son's. Please let him know that there are other VHLers pulling for him.
- By Kberri310
- Posted November 1, 2009 at 10:38 am
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Hi,
My son also has central sleep apnea. Two years ago he had a brainstem hemangioblastoma removed which hemorrhaged durning the surgery. This has resulted in brainstem infarcts. He has many autonomic problems including blood pressure regulation, heartrate,temperature,dysphagia, and central sleep apnea. He has control of his breathing while awake only. He was on a ventilator for about a month when this first happened, then progressed to cpap and bipap at night. He now uses just a nasal cannula oxygen( no trach). He has frequent aspiration pneumonias and gets very sick which requires more oxygen use durning that time.
He is 13 years old now, and has overcome so much. I'm sure being young has helped. From what I understand the autonomic problems my son has, including the central sleep apnea will be a factor for life due to his brainstem infarcts. There has been no magic medicine that has helped him so far. Sleeping is always difficult, he needs constant monitoring and some interventions by myself and husband to keep his oxygen saturations at a good level.
I will keep your son in my prayers also. If you want, you can email me with questions and updates. I would like to talk with someone going through similiar experiences.
Best wishes,
Kerri
- By Myway
- Posted November 1, 2009 at 5:45 pm
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Thank you for your replies to my question, if anyone else could add to this I would so appreciate it.
Kerri - I would like to share the experiences we are having with our sons, I will email you - if you would like to know anything that may help, although I believe that maybe you have more knowledge than I regarding this, I am more than happy.
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