Monday, February 28, 2011

Pulmonology and safe kids!

Jax had his long awaited pulmo appointment today. It was very productive and not so productive at the same time! I know that sounds weird. I wanted her honest opinion since she had told me before that she thought his clotted off veins were causing major problems for his heart. My ped had told me that cardio had talked her into the aspiration theory. She, like me, still does not believe him aspirating is the major problem. She brought up a good point. If he was constantly aspirating enough to be damaging, he would be getting frequent pneumonia's. This is one reason she doesn't think the vest would do him much good. She doesn't have any more idea's on how to help his lungs, she has done everything she knows to do.
When I told her about the move to California, she did think the altitude would help his lungs. She said I would see his oxygen need go down. I told her that when we go there, his oxygen need usually stays the same. She said that was another clue that his heart is the problem. If it was only his lungs, his oxygen need should be better at sea level.
I found a good cardio at Childrens hospital Los Angeles, and just tonight found a team at UCLA that is working on clots in the pulmonary vascular system!! Bingo, thats exactly what his problem is, so I'm going to be giving them a call tomorrow!
So the appointment was good because I know pulmo is still on the same page as me, but not productive in that she doesn't know what else to do for him. She says "he's on the vent for crying out loud, I'm not sure what else we can do!"
She thinks he looks good, and I agree that he has been a good boy this winter. Its almost creepy that we haven't had a single cold in the house! Not even my other asthmatic's have been sick. Its so weird...good....but weird!

Saturday we took the boys to the safe kids fair. We are all getting stir crazy being stuck in the house all the time. It was free, which is appealing since we are impatiently waiting for our tax money to come and rebound us from Arina's adoption!
Its nice because it teaches the kids all about safety. Fire safety, bike safety, and best of all, Iron Man was there. We had to stand in line for a picture because Tanner was dying to see him.

The crash test dummies!

Although there wasn't much for her to do, Arina was pretty good the whole time!

Teaching the kids bike safety.

Tanners beloved Iron Man. We couldn't get Arina to look at the camera, she was intrigued by the big red man!
Tanner and Carter being firemen! They were so fast that they were just a blur!

Trying out the police motorcycles


Grizzly Bear said...

I live in northern cali. I hope you are able to find someone who can help Jax. Pics are so cute!

Me said...

I hope the docs in California have some answers! It would be about time.

It's been a weird winter here. Only this past month have we had sickness, and it's only been Pierce. Nolan has asthma this is triggered by illness and winters are tough on him. Normally we have about 3 trips to the ER during the winter, and this year he hasn't had to use his rescue inhaler mcuh at all. He is also normally on a daily puff of flo-vent from Sept-May, and he hasn't had that at all. Our Ped is pretty sure he is out-growing it which would be soooo wonderful! If only he could out-grow his peanut/nut allergy too!

Team Carter Jay said...

My husbands truck was on display at the safe kids fair. Did you see the Union Pacific Railroad truck?

Becca said...

You are the BEST advocate for Jax!! So glad you have found a good team in CA. Hope they can give you some answers and solutions to the little guy's problems!! And I'm so glad you have made it through the winter unscathed. He sure deserves the break!

Stephanie said...

OK. I have to weigh in on the pulmo stuff here. ... Unfortunately, the whole aspiration always equals pneumonia thing is NOT true! The ONLY time Christopher had pneumonias was when he was on the vent, and it was holdig the airway open.

Once we FINALLY got a bronch done, it was found that not only does he have malacia ALL the way through his lungs, but that the "trees" in his lungs are so small they coulnd't get their smallest NICU scope down them. The Pulmo said the only other time she has seen airways that small were on autopsy. :(

Anyway, what they finally figured is that the malacia was actually protecting Christopher from drowning - his airway collapeses between breaths and blocks anything big from getting way down in there. Small amounts still make it in there and sit - which if it is refluxed stomach acid, or even saliva, it will digest that spot in the lung. BUT it won't be enough to cause a big pneumonia.

I hope this is making sense. It may not be at all what is going on with Jax (it doesn't sound like it to me either), but blanket statements about this stuff from docs drives me crazy! LOL!

Honestly, that is why Christopher spent 6+ months in the ICU after the first open heart. He crashed 17 times - all from aspirating, but nobody would believe it because he didn't have pneumonia. :(

I hope you guys get to Cali soon and get some fresh eyes on him, and new ideas. I have a feeling he is about to take off here, and you are going to have your hands full (er?) LOL!

LOVE the pics of the safety fair! Looks like so much fun. :)


Steph and Christopher

Scrappy quilter said...

Hopefully the doctors in Cali will have the answers you need for Jax. So good to read your house has been "sick free" this winter. That's wonderful news.

The kids look like they are having a blast. Hugs

Mama Mason-Mann said...

Knock on wood about the colds! ;) Love the pics!

Melissa said...

I hope the Cali Drs can help you out! And I'm so excited that you all have been cold free this winter! I wish we could say the same...

The VW's said...

I can't believe your family has stayed healthy all winter! I wish that I could say the same for our family! Hope Jax continues to do well and that the new docs will have fresh ideas to help him!

Holly said...

So glad you're finding good docs in Cali! Must make moving a little earlier! pics are cute, look like fun, my boys would love something like that!

ANewKindOfPerfect said...

What fun!! Like you, it is sort of weird that we made it through flu season with hardly an illness. Cross my fingers and knock on wood!!

I can't wait for you all to get here. I just know that someone here is going to be able to help get Jaxson better. ((hugs))

Meghann said...

The fair looks like fun! Sounds like Cali may have some good support for Jax, I hope they can help you find the answers.

Kristin said...

Good news about UCLA!
In response to your comment...
I know - every time we got to a playdate and meet someone, or several new people, I swear, there must be something in the Utah water. There are a TON of Ds kiddos here locally. It's good for us though :)

Shelly Turpin said...

excited for this cardiologist - hope they can help. love the pics of Arina and the army men :)