This is the update on what we have been told:
It is going to take him 2-3 months to even tolerate this machine. (Can you see why???)
It is going to be very tiring and time consuming to get him to tolerate this machine. We are going to want to quit - but we can't. The doctor said to be prepared for a lot of frustration. And she said one of the best times to get him to put it on and leave it on is while he is watching TV - guess we will be watching a lot of TV in the near future. You can't just put it on them at night because when they wake up they will be scared of it - so you have to get them to wear it while they can see it and get used to it.
Either I am camping out in his bedroom or his crib is coming in to ours (our doctor said I will probably be up every 15 minutes putting this thing back on his face). Sounds like fun!! We are also constructing an oxygen tent over his crib which includes a nylon or silk sheet, a funnel, duct tape (lots and lots) and oxygen tubing. I will have to post pictures after I rig up the crib to the specifications we have been given.
If we cannot get him to tolerate the machine in one or two months the doctor will prescribe a sedative to give him in order for him to leave it alone for any period of time.
If this doesn't work and we cannot get him to tolerate it the only option we have left is to trach him. The series of three surgeries told to us by our ENT has been nixed by two doctors after him. They said it is too risky and there is not a big enough chance that it could fix him to even entertain the idea of doing them.
Please pray that he will be able to tolerate this - we need this to work. And if you read this blog and have been through this with your child - please let me know of any advice you can think of that helped you get through this. We really really could use the help!! Thanks so much for loving and praying for our little guy!
Also, Carter's friend Ella is in need of some special prayers too. She was diagnosed with leukemia a week ago and has already had her first round of chemo. She is the cutest little thing - go check out her blog. You can click on her button on the side of this blog! You will just fall in love with her - she reminds me so much of Carter and his silly faces and endless smiles!
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11 comments:
This is Joyce. Oh my. First off, he is so stinking cute in that thing I can't help but smile. Seriously though, gosh who would want to keep that on. I wonder if having one of his sibligs pretend to wear it would help. Does he like to do what they do? Good luck. I read the last resort being the trach, so I hope this works out.
I agree with Joyce. He does look darling even with that thing on his face. But I can definitely see why he hates it and why it might be scary. We will be praying for him and for you (sounds like you'll need an extra dose of patience). Maybe he could have a training session with Grandpa.
Oh that thing looks like no fun at all! Gage and I say special prayers for Carter before bed, but will send extra ones his way. I hope so bad he tolerates it, I really like the idea of having Ashleigh and Parker wear it for him to see! If I come up with any other ideas I will send them your way, but until then lots and lots of prayers. I wish we could get up there sooner than later so I could take your kids for you so you could get some sleep after what sounds like will be some sleepless nights. Until we get up there, let me know if there is anything else at all I can do. ((HUGS)) to you all!
GO Carter! You can do it. You've done stuff harder than that. I know you'll get used to it and be breathing great in now time.
LOVE YOU!
Kristi you are amazing. Seriously I am in awe at you every time I read this blog! So glad to call you family. Love you. I'll keep Carter in my prayers along with you!
Bless Carter, I hope everything goes all right for you guys with the new machinery.
Sending love from across the pond.
I really hope that it is 'easier' than you think and that he tolerates it sooner than you'd know! I think infront of the TV is a good idea - if he gets as engrossed as Malakai does - it just means ensuring there's something he really loves on TV and maybe that'll do the trick?
I really hope so!
I think its a great idea to put it on him when he's awake, we never were told to do that with Jax. Are you trying it at night right now or just during the day? I wondered if trazadone might help. Its done wonders for us in helping him sleep, and its not a respiratory depressent. That might help him sleep. What on earth is the oxygen tent for?
I need to come over sometime and do my summer letters!
Oh.... sweet Carter. You bet we will pray that he will get used to this. Can't blame the love bug, I wouldn't want that on my face either. Loads of prayers.
Boy have we been where you are. I also like the idea of getting your guy used to this during the day. We just gave Parker a bit of Benadryl (sp) each night before hand. Then as time went on he tolerated it more and more.
We did wind up having to go with the trach due to Parker's issues. And he actually tolerates the vent at night much better than he did the C-Pap.
I bet you'll get your guy used to it before too long!
Tammy and Parker
www.prayingforparker.com
@ParkerMama on Twitter
Bless his heart! That looks miserable!
poo poo
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