Here I am at 4am on the first day of the new year, awake as usual.
Nothing new to announce, only the same old issue to grapple with - Vera's Obstructive Sleep Apnea (OSA).
It has gotten significantly worse. Whether it's to do with the weather, who knows. We used to get by with her waking at 5am due to difficulty in breathing. Over the past month, there have been more consecutive bad nights, where she struggles almost on the hour, sometimes every half hour between 1-6am.
Which is why my body clock has self-adjusted. Automatically, I'm awake from 3-6am now. Because I know during this time, Ian is unwakeable, and Beth needs rest because she takes over at 6am when Vera awakens. I catch some sleep till 9.
Recap of duty drill: Vera struggles with breathing. Pick her up. Elevated, the blockage clears momentarily. Rock her till she settles. Put her down again. Reposition Oxybunny. Repeat if unsuccessful.
But after one month of missing the deep sleep hours, I'm sitting in bed staring at Vera and thinking: 'This is crazy'. (Or maybe it's good training for the breastfeeding hours when the baby comes?)
We know what the solution is - CPAP, biPAP, oxygen - we just can't execute it. Therein lies the frustration - Why do other parents manage to get their kids on the mask, nasal cannular and we can't with Vera? Did they struggle with their kid too, but overcame it? Are we not trying hard enough? Giving in too easily to her protests?
After a month or so of blow-by oxygen (which I think is not much help but the only thing she tolerates), I tried my luck putting on the cannular twice yesterday.
The enthusiasm of the initial days gone, feeling defeatist even before I started. Expecting her to fight me, and giving in when she did.
The effect of poor sleep on Vera is increasingly obvious. Her tiredness discourages her from working at physio exercises in the day. She refuses to do her favourite sit down/stand up thingie.
I could go on. But I think that's enough griping for one night (morning).
01 January 2010
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4 comments:
Oh, May. I know it is so hard to deal with life without enough sleep. I don't have any answers, and wish I did. I do know that things that Mallorie fights at first, sometimes with time she learns to stop fighting, so maybe in time she won't fight the nasal canula? But that is really making things sound too simple, and I know it is not. I wonder if making her work on it in the daytime, when you are not exhausted and finding it so hard to be firm, would help? Telling her, "I'm going to put your oxytube on, now," then doing it, taping it, praising her, holding her and doing something else she enjoys, letting her get used to it. Each new thing with Mallorie is an adjustment, too. Of course, it's one thing to fight through 15 minute breathing treatments repeatedly until she learns to just accept it, and another entirely to fight through a continuous oxygen supplement that doesn't stop at 15 minutes, and just when you desperately need to get some sleep, yourself.
I think you said that you use saline in her nostrils with suctioning? It seems like Mal does better with her breathing when she doesn't have colds and congestion.
I wish caffeine was a solution for her. For some reason, because Mal's is a mixture of central and obstructive apnea, treating the central part helps a lot to also make the obstructive more manageable. I wish that were so for Vera.
Griping is accepted here! That is probably why I haven't been blogging, just not feeling so positive. Annabel only tolerates her canula while sleeping, so I have to wait until she has just gone to sleep then carefully place it. But you are right, this does take time. I am praying for you that you are able to begin getting your rest, thankful that you have help but it still wears on you. I need consecutive hours of sleep or I physically feel bad.
I was just thinking about the portable hyperbaric chamber. Although it's used for healing purpose, it also uses oxygen. They are expensive. Just wondering if they work.
Hang in there May! I pray that Vera will be able to sleep well and be free of the oxygen mask.
Hi May,
Have you tried to cut off the "2 protruding tubes" that supposed to go inside the nose, and dig a small hole to let the o2 come out? I tried that on Xavier for more than 1month, he hated it, but still it was bearable for him...
Hope it helps
Jasmine Liew
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