Friday, August 28, 2009

More Disneyland and more c-pap frustrations

Yeah, so I'm a horrible mom. We got our c-pap machine on Tuesday and he has yet to wear it at night yet. I'm not quite sure when to put it on him. He's gotten on this horrible sleep schedule, were he doesn't go to sleep until 11 or 12 at night. I try to stay awake and wait for him to fall asleep, but I'm exhausted. He has been sleeping horribly lately, and I haven't had a good night's sleep in about 2 weeks, vacation included. So today when he fell asleep for his nap I thought it would be a good time to try putting it on and see if it wakes him up. He didn't move when I put it on. He also didn't move when I turned the flow on, although it starts slow and builds up to a peep of 8 in a half hour, thats so nice. The only thing I noticed is his sats were dropping. I thought the c-pap would make his sats the highest they've been, but he would desat, and then come back up. He actually sats lower on the c-pap. Someone said it could be getting used to using it, has anyone else noticed this the first few days of c-pap. Also I don't want to use it to much because I'm interested in what his pulmonary pressures are right now with his respitory distress. the c-pap should help that and I want to see what they are now. We have an echo next Friday. Does that sound wierd?
Finally, success on getting c-pap on the sleeping child.







Back to Disneyland. Mommy and Jax going on Dumbo.



Jax getting ready to "fly"

You can't do Disneyland without breakfast at Goofy's Kitchen.




Dancin with Goofy.
Our friend Dale. Remember last time we were here, Dale stayed with Jax for 15 min's. Kissing him and touching him. I know this person under the mask has a DS child or sibling or something. What are the chances of seeing this same person again? It was definitely Dale both times though. I would love to talk to that person but you know that will never happen.
Daddy in his bullet proof vest at his ride along with Joe.

Jax getting strapped in to go back to Disneyland.The staff was so good to him.








One of my favorite pictures. Walt and Mickey, the makers of Disney. There's just something magical about Disneyland that you don't feel at any other theme park.

Tomorrow the last of Disney and our last beach trip were we met up with another bloggy friend.

10 comments:

Shari said...

I know this may not be the exact same situation as Jax's. My husband has terrible sleep apnea and we got an order for cpap after a sleep study. He was also hooked to a pulse ox to check his sats, etc. His sats were all over the place with that thing. We ended up having to have it re-programmed to a higher peep level. I know you advocate so well for him. Just watch it and if it doesn't work right then call Dr. back about it. Now, my husband uses a bi-pap. Who knew that my husband's throat is mis-shapen and can't be fixed.

Kristin said...

I love how a little of the faux-hawk still sticks out thru the cpap :)

Denise said...

Ray looks good in his vest!!! Good luck with that darn CPAP!! I agree, there is something about Disneyland that is magical. Even though I live here and hate how crowded it is...there is a feeling once you are inside that you don't get anywhere else. Hope to be able to go there with you guys someday!!!

Trina and Jophie said...

I'm beat girlie but needed to toss you this link before I lose it or forget...

You may already know about this but I just got a look at it yesterday...I'm soo thinking I could make these in bigger sizes for Jophie but for now I REALLY think this would be awesome for Jax in many many levels..

Make sure and watch the little video so you can actually see it in use. They actually use a little one with Downs in the video...OH and look at the pictures ..Can't remmber what catagory its under.

Not too price at 29 dollars....

Let me know what you think..

http://myhuggabebe.com/index.php

OK I seriously have to go my eyes are slamming shut and my head is literally hitting the keyboard..

Benaaaaadaryl isssss wroiking....
Talk sooonne
Trina and Jophie

Junior said...

Lacey, Junior never did real well on cpap. Once they switched him to bipap he did far better and we now only have the sat drop issue if he has a chest infection or asthma.

Kim said...

Great Disney photos! How touching to see the characters with Jax. I can't wait to take Mattie to Disney when she gets older. Something about the magic you see in a little ones eyes.....and the grown ups that feel like children too!

ANewKindOfPerfect said...

Lacey, I thought about you guys yesterday while I was at Disneyland with my son. It is such an amazing place, even when you live here. It doesn't get old. :)

I hope that you can get the CPAP thing figured out.

Michelle said...

So sorry you are not getting good sleep. I know all too well how that feels...changes the whole day! Hope you can figure this CPap machine out soon and Jax will get used to it and start sating well! Love the Dland photos...funny about Chip...Ithink you are right about him. That is a great picture at the end...captures the magic you feel at DisneyLand! I love it there!

Emily said...

Oh man... good luck with that cpap. I hope you are able to get some sleep. Disneyland is the best... something truly magical about that place!

Mama Mason-Mann said...

Oh Lacey, we feel your C-PAP-pain! My husband was actually relieved a little when he read your post. He said "I'm glad we're not the only ones who have trouble getting it on!" We feel so guilty, but we have to wait until she's in a deep sleep and sometimes we're in a deep sleep before she is! LOL Chloe doesn't have oxygen or a sat machine so we have no idea what her sats do when she goes on. I do watch her breathing and she does seem to take a few minutes to adjust her breathing pattern. Good luck!!!!

and I couldn't agree more about Disney being a magical place. We were married at Disney World at the Grand Floridian Hotel just because it is such a magical place to us. We have yet to take our kids. Some day. . .