Monday, August 10, 2009

Calling Dr. Lungs

Today Jax has been a little worse. He acts fine, but he is breathing a little faster and we are back up to 1 liter of O's. I have done a couple of breathing treatments, mostly just to make myself feel like I've done everything, even though they don't seem to help much. Which is really strange because we have a house full of asthmatics.
I was also seeing some of his desats his been doing. Since he was up at the crack of dawn, he was back to sleep around 9. His alarm would go off, I would go in there and he would be in the 80's, even with the oxygen in. Then he would come up himself. The sad thing is, I think we have both airway and lung issues. The airway issues have just gotten worse the last couple of weeks. We are trying to figure that one out. Dr. Lungs got us in Wednsday, which will be nice to get it in before we head to Cali on Friday. The lung issues, well I wonder what could have caused that...
Could it have been this?

April 06
Or maybe this...

May 06

Couldn't have been one of these two...

June 06
July 06

You think this one? Naw

Sept. 07

He looks normal here, don't ya think?

Jan. 08

And no way is it one of these two.

Feb. 09

June 09

Sorry, have to have a little humor, right?

18 comments:

ABandCsMom said...

You gotta go with whatever works!!
I have tears in my eyes viewing all those pictures. I still have a hard time looking at Carly's hospital pictures. Praying Jax is doing better and that answers to these problems are able to be found. Soon!

Michelle said...

Poor little guy! Hope Dr. lungs has some answers for you Wednesday! I think we have the same Oximeter! Gotta love that alarm noise. I think I hear it in the store, in the shower, in the park...I hear that dang beeping all the time!
Thursday could be good for us, just wanted to make sure you'd have enough time for dinner with packing and leaving the next day??

The VW's said...

Poor little man! He's been through way too many hospitalizations, surgeries and being on the vent!

I pray that Dr. Lungs has a solution for you!

Also, doing breathing treatments on a kiddo like Jax, whose lungs look like "crap", you won't see that they are helping for days, weeks or maybe even months. There is a lot to repair and this doesn't happen overnight unfortunately.

When you see the doctor, fight for daily nebs on him! I REALLY believe that this will make a difference for him! Plus, I was thinking that you guys are at a higher altitude, being in the mountains, so this makes for even more lung issues on a kiddo like Jax.

Praying he gets better soon! Love and Hugs!!!

Kristin said...

Oh man - Jax needs double prayers today. No child should have to endure all that. Hugs.

Shari said...

Oh Lacey! Poor guy! I am praying they can find some comfort for him soon! Hang in there sweetie!

Suzie said...

We'll keep you in our thoughts and prayers.

Alison said...

No wonder he has breathing issues - he has been through so much. I hope you get some answers on Wednesday.

Stephanie said...

Oh how I hope Jax is feeling better soon. I hate to hear that so many of our friends aren't doing well lately.
I hope he's feeling up to your trip, you all deserve a get away.Just wish we could be along for the ride!
Kiss that sweet boy for me.
Praying like crazy sweetie.

Aspiemom said...

Humor is good, but seeing those pictures is hard. Poor guy! Hope he can breathe better soon!

Emily said...

You amaze me girl! I am glad you can find a little humor during this hard time with your sweet Jax. I really hope Dr. Lungs has some fabulous information for you! I also hope you are able to enjoy your upcoming trip that you deserve!

Parker said...

He has been intubated way too many times - poor boy. I really wish Boston would call you soon.....

Hopefully Dr. lungs will have some answers on Wednesday. And we hope Jaxson cooperates so you can go to California on Friday!

Let me know if you want me to work on any blankets while you are gone. I can either get one made or if you have some ready I am happy to crochet them. Talk to you soon!

Anderson Family said...

OK that Parker comment was from me - Parker just got an email account and I guess he was logged on - woops - something I guess I will have to check from now on (oh the joys of kids growing up.....)

Conrad, Megan and Our Precious Keaton said...

Prayers across the ocean from South Africa! Oh Jax, my heart breaks when I see what you have had to endure in those photos! You are so strong! You are an inspiration to me! God bless and big big big hugs!
Megs and Keaton

Trina and Jophie said...

Oh man.....Does he still have the steroids on board?

Also just thinking out loud here...

Do you have any atrovent there at the house? I know when Jophie gets really bad and I'm doing continuous nebs a dose of atrovent really makes a diff....

The atrovent is really a cool drug....I know protocol here is 5 doses(not in a row) but along with the abuterol at appropriate intervals/dosing is he max before you move onto other measures...

Cool thing about it is it works on restriction rather than dilation. Both Albuterol and Atrovent work magic together I only wish I would have known this prior to trach when he had so much trouble...

The way it was explained to me was the albuterol dilates or rather opens the airway as I'm sure you well know then add the atrovent which relaxes the contstriction just like when a snake restricts its prey our boys airways are just plain ole damaged and restrict against themselves....No amount of albuterol is going to work if its too restricted to "allow" it to dilate...Make sense?

You prolly already know all this but just in case I wanted to toss it out there....

By the way I started this post yesterday and was just about to turn off the computer to hit the sack and saw I forgot to finish! DUH..LOL

OK I really need to scoot...Sorry if thats all over the place and jumbled but it's 5 a.m. and this momma is typing in a daze! I neeed some Zzzzzz's soon! I have an appointment nearly into WV tomorrrow....

Night! eerrr I mean Good Mornin':0)

Trina and Jophie

Mama Mason-Mann said...

Good luck with Dr. Lungs. We're all thinking and praying. Keep us posted. those pictures are something else. What a fighter!!!!

The VW's said...

I'm back again, thinking about you and my sweet Jax! Praying he is breathing better today! I just read Trina and Jophie's comment and she is right about those two neb meds working well together, but we were told that albuterol is not a good choice for kiddos with heart issues. So instead they chose Xopenex for Gavin, which works better on heart kiddos.

Gavin gets Atrovent and Xopenex together 2 times a day. This really does open up the airways! He also gets Pulmicort (a steroid breathing treatment) 1 time a day, after the Atrovent and Xopenex have done their job of opening up the airways.

Thinking of you guys lots.....and now Zoey too! :( Poor Heather!.....I'm praying that Zoey hasn't relapsed! Love and Hugs!

sturpin said...

I agree he has been intubated too many times! Bella has two different steriods - does Jax have anything?
Poor sweet boy. I hope they can figure it out tomorrow.

ANewKindOfPerfect said...

Oh Mama .. those pictures must break your heart. Little Jax has been through SO much. I hope these doctors figure something out SOON!!!