Wednesday, August 26, 2009

Jax new friend Mr. C pap

Jaxson got his c pap machine yesterday. I put it on him today to get it adjusted. He actually didn't seem to mind it. The nice thing is it starts out slowly and works its way to a peep of 8 in a half hour. That gives the kid time to get to sleep without it blowing to hard. We will give it a try tonight and see how everything goes. We also have an echo to schedule to see if his pulmonary pressures are up due to this respitory distress. His xray doesn't look much better today either. Tomorrow I need to call Boston and see when they can get him in. They told me to schedule the venogram, and my ped was telling them they need to see him in clinic first. He is a complicated kid and they need to know him before they go in. Know that his veins are shot. They are talking like a cath is going to be easy but all of his veins up top have clotted off. And both groins are distroyed from being the primary veins for the last year. If you remember with his surgery in June they had to do a cutdown in that left groin. This is not going to be as easy as they think.



More vacation pics too. Tuesday we went to the beach. It was kind of an overcast day, and right when we had to leave the sun started poking through. It was also a very quiet beach with not much waves. This is the foot our neighbors made.



Wednsday night Ray took Mondo and Carter to a Dodgers game. Me, Tanner and Jax stayed home. There was no way I was taking Jax, and Tanner would have been way overstimulated by the noise.



Disneyland pics coming up next.

17 comments:

Junior said...

Looking good in your Cpap Jax, hope it works really well for you.

Looks like the boys had a great time at the game.

Heather said...

Anxiously awaiting news from Boston.Come on and hurry up would ya?As for Jax's new friend ... what a contraption on my little guys face but got to do what you to to do for easier breathing sweet boy.I see is little eye crossing in trying to figure out what the heck is going on!Love to you all.

Trina and Jophie said...

Check out that little dude! Jophie really liked his too "at first" ....

Turns out the trach actually reduced the pressures alot and dropped those CO2 levels...

Didn't you mention at one point they were tossing around a trach? Just curious?

Ahhhh....Look at that ocean

Trina

stephanie said...

Boston better handle this right. Thet need to REALLY kow Jax before hand. No need for them to get overly confident before they even meet him. Hope that c pap make breathing easier for the little man.
BTW, that is one cool foot! Nice beach too!

Mama Mason-Mann said...

The boys look really cute at the game! What a fun memory for them!

Fingers crossed the you hear from Boston again soon. The CPAP looks familiar! Looks just like chloe's. We can only put her's on once she is already asleep (she uses it for Obstructive Sleep Apnea and doesn't get oxygen). Poor guy. Just one more thing, huh? Big hugs to the sweet little man from me and Chloe! (and hugs for you too!)

The VW's said...

Sounds like you guys had a very busy, eventful and fun-filled week on vacation! I can't wait to see the Disney pics!

I hope that Jax does well with the CPAP! He is so good to tolerate it! Gavin would have had a fit!

I'll be praying that the Boston trip gets sorted out soon and that everything goes smoothly for you! LOVE and HUGS!!!

ABandCsMom said...

Glad to hear he doesn't mind the Cpap. It looks like it would be a miserable contraption to wear.

Michelle said...

I hope Boston gets back to you quickly this time and has a great plan for you! That is quite the contraption! Glad you got it in and hopefully it's just what Jax needs! loving the new set of vacation pics...the beach is great even on an overcast day...the sounds, the waves, the sand...pefection! Glad daddy got to take the boys to a game! Male bonding time! :)

Jeana said...

Darn the CPAP...he and kaelyn are twinners now. His looks like it might work better than hers though, she is always leaking air and so it stops bubbling.

ANewKindOfPerfect said...

Look at that gear on his little face! I am glad he seemed to tolerate it fine, I hope it really helps him!!

Emily said...

Okay Boston... we're counting on you! Come on!
Your vacation pics all look like so much fun!

Stephanie said...

Jax looks adorable wearing his "elephant trunk"! Hope it does what it is supposed to.

Anderson Family said...

C-Paps are such funny contraptions - but if it will help him breathe better and he will keep it on then why not have a funny contraption.

Love all the vacation pics. By the way I keep forgetting to tell you I have your blankies when you are ready for them. Just give me a call.

Kristin said...

At least you got to finish your vacation without the CPAP.

Kim said...

What a contraption! Hope it helps the little man!

Kim Rees said...

Continued prayers for your little guy that his new friend Mr. C pap works well and does the job. Will continue to pray that Boston moves things along and that everything goes well. It is in God's hands. As always God Bless you all and keep the faith.

Kristin said...

Lacey, we don't know who the surgeon is yet - they said there would probably be two, and they'd let us know at our pre-op appt next Wed...