Friday, May 28, 2010

Jax new trick

I guess when you breathe through a tube in your airway, you can sleep on your face! Jax has been sleeping like this lately. I don't care where you breathe from, that does not look comfy!


I talked to Jax cardiologist yesterday. He explained the echo better. He said there is a white spot that has come up on his last few echo's, but he doesn't think its an active clot. He thinks its scar tissue from his clot in his SVC. He said his pressures are higher than normal, but lower than pre-trach. So the trach indeed was a lifesaver. He also said he does still have the VSD, but if there is an ASD, it is very small. Because some echo's show it, and some don't.
The problem is we still don't know why Jax oxygen needs never went back to baseline after he was trached. I thought they would maybe even get better than pre-trach, but they've stayed high. It could be a progression of lung disease, which of course is not good news. Cardio said there are a few things we could do like take him back to the cath lab and look at his SVC and see if it needs to be ballooned again. I say do nothing right now. His health is pretty good besides needing more oxygen, lets not rock the boat!
We aren't doing anything this holiday weekend. Just trying to get as much adoption stuff done as possible because we will be out of town the whole next week. I was hoping to get our paperwork submitted before we left but that's not happening! Everyone have a safe and fun long weekend!
FYI, you may see that our button for this blog and the blankie blog is gone. You should see the blankie site, its a mess! This happened once before, and the girl that did our blog had expired her subscription with whoever she used. But I'm having a hard time finding Rebecca, but we'll get it fixed soon!

23 comments:

The VW's said...

Jax, that sleeping position does not look comfy at all! You silly boy!

Glad to hear that his pressures are beter post trach! That's somewhat of a relief I bet! Hope his oxygen needs get better soon too!

Have a great weekend! Love and Hugs!!!

Becca said...

Hahaha--great photos! Yikes, it certainly does NOT look comfortable!
Sorry Jax still doesn't have any answers about his sats. I hope you guys can figure out what's going on with this little guy, your very own medical mystery. Hugs to all of you. :-)

Btw, I can send Rebecca a message on FB to get in touch with you...

Rochelle said...

Poor boy, that doesn't look comfortable at all!
Glad you got some better news from the dr.
Have a nice weekend!

Anne and Whitney: Up, Down and All Around said...

I couldn't help but laugh at your comments about the pictures of Jax sleeping with his face directly in the carpet - how in the world can someone sleep like that???!!! :)

mandd3 said...

Oh his poor little smooshed nose! That is a great picture Lacey. Glad to hear his heart is holding up well, and hopefully his lungs can do the same. Have fun with all that paperwork!

Meghann said...

I'm glad to hear the results weren't as scary as they seemed before. Good luck with all the adoption paper work. I hope you enjoy the long weekend.

CFMama said...

Oh my goodness that is too cute. I couldn't imagine sleeping like that but hey whatever floats Jax's boat and gets him the most rest!

Anderson Family said...

Nope, I agree that does not look comfortable. His poor nose must get sore!

I agree - don't rock the boat - just keep on keeping on! He doesn't need more procedures done! Have fun with your mountain of paperwork and have a great memorial day weekend!

Heather said...

Can't wait to see you guys and get a hod of that sweet boy!

love the pictures and news,not too bad.I know you hate the trach but it sure seems to have done the trick.and for that we are all glad.

To Love Endlessly said...

Oh Jax! you look so uncomfortable! How can you sleep like that?!? I'm glad you got some answers on that Echo. sounds like it was quite a headache.

jjpsmommy07 said...

no that does not look comfy at all! but he does look very sweet.

DevonLeah said...

the not knowing everything is the worst. =( Hopefully in time things will all work out.

Cute pics. My friend couldnt stand it when camden would sleep with blankets on his face during naps. Id tell her he isnt using that to breathe then and she would be so aggravated with me lOl

Skye is the Limit! said...

oh my!! I had to giggle!! Cutest pictures ever!

Skye is the Limit! said...

Ill respond to you here, cause i never know if people get my responses on my page or not :) haha anyways, i make a med sheet for ER visits or new doctors visits so i dont need to waste their time and my breath on saying them all! lol, it helps alot.
i just used excel spreadsheet and typed it in quick, i also did a little "story" on skyes medical history and what she does and doesnt like currently. just in case something ever happens to me...its like a book, i call it skyes manual lol

Skye is the Limit! said...

That sounds like a good idea, i kind of have something like that but its not "hospital form" its just my own little thingamobob :)
get your hubby into the action!!

Sasha said...

Yes I totally understand not rocking the boat! Nice and steady is what we want. Glad to hear that there is no clot. Yeah I was wondering about the button as there was blank on my site where Jax's picture is. Hope you find some answers though on the oxygen. What a way to sleep-hey I can only get wysdom to sleep in a bouncy. Have a good weekend.

Derek, Kenzee and Gage said...

What a silly boy! I agree, that does not look comfy! Glad to hear the doc doesn't think it is a clot, that is good news.

Ruby's Mom said...

He must be really tired to be able to sleep like that.Little sweetie :)

Michelle said...

No, it does not look comfy at all. He must feel good that way. Glad for the news from the Cardio.

Those pics just crack me up.

CFMama said...

Lacey, I remember reading that about our fridge to but I just ignore the advice. I use vinegar on the water/ice area and a stainless steel spray everywhere else. =) It hasn't self destructed yet. LOL

ANewKindOfPerfect said...

Seriously Jaxson, that does NOT look comfortable!!

I'm glad to hear his pressures look good, even if his oxygen needs are higher than before. It must be reassuring to find out that the trach is really doing good, with all the yuckies that come with it!

Melissa said...

OH MY GOSH, Jaxson you silly boy!!! You're right, that does NOT look comfy!

Catching up on the little man & glad that he's hanging in & not making too much trouble for his Momma!!

Hope you guys had a nice Memorial Day & got a chance to relax!

Love & Hugs!

Baylee and Blair's page said...

That is hilarious! But, he must be comfy otherwise he probably would of moved!

Hugs- Tiffany