Four unsuccessful nights and I am close to giving up.
I knew Vera wasn't going to take the mask lying down, no pun intended. She co-operated for the first night, and that was it. From then on, the moment the air starts blowing, she does her kungfu fighting moves and I haven't even cupped the mask.
One problem is that she needs a mask that covers her face and mouth. So we've gotten her an adult nasal mask, which obviously wouldn't be a good fit (it's made for an adult-sized nose and Vera's face are so small the mask juts out her jaw). The headgear is also free size, meaning, for adults. Why? Because the company recommended by the hospital only had this one option to choose from. And because we had to purchase the mask in order to get the CPAP machine on free trial for a month, we did. Mistake.
We went on the Internet and there were so many mask options there. The problem is, we need a pediatric full face mask. I still have no luck finding one.
If she can't accept the mask, we can't get a sleep study done to find out her levels needed.
If we give up, we'd be knowingly allowing the chance of hypertension and heart issues to come into the picture.
You should hear what goes on in my head every night: "I give up! No, one more time, just be gentle. But she doesn't want it! No, it's good for her! Okay, okay one more time."
Someone give me a mask expert because I'm running out of ideas.
p.s. I'm secretly impressed by Vera's nocturnal defence instincts.
7 comments:
Hi, please let me know if you can find one in the US. we can get it delivered to my address here and when my sister visit in June, they can bring back for you.
oh may, I am sorry this is happening but I so can hear the same thing each and every night in my head also. Last night, after not sleeping for weeks I said no bi-pap and no pulse ox. She fell asleep around 8:30 and sleep without a sound til 7:20 a.m. Do I have tons of guilt, more than you can imagine!!! I just needed some sleep. I know you do also and peace about what we are doing. I am sorry for the mask episode.
It is obviously they need the machine due to their findings on the study but we are having other issues compounding the problem. 1) her secretions are being push down into her airway causing her choking problems 2)due to sleeeping with her eyes open a bit and scaring, the air that seeps from the mask is getting her eyes dryer(we do place ointment) 3)Also with her gut issues, the machines are placing air in her tummy. Is Vera having any of these side effects from the machine? Just things to watch for especially if her mask is not fitting well. They need to have fittings when they are doing the sleep study so our babies can try different ones and people trained in these areas can advise us mommy's what is best.
Praying that you will get some answers. I need to look back on my post c-pap vs. bi-pap and see what those mom's commented. Maybe we can get some others opinion going.
Oh May,
You poor thing. You are such a wonderful mother. I agree, I am mighty impressed by Vera's Kung fu moves and stamina.
I think there are some moms on the tri-med site who used CPAP/BIPAP for their tri kids. Are you a member? If not, I will ask the group the question for you if you want me to.
There must be an answer. Would mild sedation of some sort, even a natural source, be helpful?
My heart goes out to you, Ian and Vera.
Barb
www.anniefarlow.com
May, This is Cathy again. This nice lady left a comment on Annabel's site when I requested info about c-pap etc. I am pasting it here if you want to contact her via email. She was very positive.
Nanci said...
Hi Cathy:
I just got a message from a yahoo group I belong to. I am Nanci, mom to Soleah (tri-18m) from Houston, Texas. I heard you were also from Texas. I haven't had time to read your site to find out more but I do have experience with bi-pap/c-pap with Soleah when she was younger.
Please email me @ nancii@swbell.net
Blessings, Nanci
April 20, 2009 4:04
Hi I have been reading your blog and after this post called some sleep labs here in australia to find some information out for you. The companies here that provides child masks are respironics and resmed. You can read more about them from the internet. Apparently there is a respironics branch in singapore. Well i hope this is of some help. If you happen to need one from these brands and cannot get hold of them there or need more contact info from here we will be happy to send you one from here. My email is simlen@hotmail.com. There is also an article that is forwarded to me http://www.touchrespiratory.com/files/article_pdfs/resp_7863. Well all the best to you and god bless.
hello there again i posted the earlier comment regarding child masks from respironics and resmed. The agent from respironics just called me and said that they do not have a mask that is small enough to cater for an infant but the smallest one available from here is from resmed called quatro. You can check the model out on the website resmed.com.au which has a template as well and if you need more information you can email tony at resmed and he will be happy to email you more info or pdf. His email is tonyh@resmed.com.au. Again we will be happy to send you one from here if you do need one as i think you need to order one through the hospitals here.
thank you so much simlen. I will check out quatro and compare it with the mini me. thanks again for all the trouble!
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