Tuesday, August 3, 2010

A plan and a smile!

Yesterday's pulmonology appointment was interesting! A lot of stuff learned, a plan of sorts is being set in motion.
I'm going to try and explain it all without totally confusing you! I'm still a little confused. There will be a lot of medical mumbo jumbo!
My pulmo explained Jax echo better than his cardiologist did. She's as confused as me. In one letter is says "no significant change", and on the report is says "significant change". It looks to her like a significant change. It says his right ventricle is extremely thick, and there's flattening of the interventricular septum. I'm not exactly sure what that is except that its flat from the pressure. His pressure measured 50, normal is high teens to 20. We've been much higher than 50, but its still not good, and it will only get worse unless we take care of it. Pulmo thinks that cardio is doing nothing because he is waiting until it gets worse. She also thinks he is worried that he'll get in there and not be able to fix anything. Then he has to give us that bad news. She has a feeling that its not straight up PH (pulmonary hypertension) The trach should have helped that. She's a little worried that something else is causing it. Something like obstructions in his venous system. She is thinking that because of his clotting disorder that has caused him to block all of his major veins in his upper body. She thinks there is a lot of congestion in there, and vessels are going every which way. This might not be an easy problem to fix. She thinks he needs to go to the cath lab, have his pressures measured, try PH meds while he's under, and look at his venous system. I told her that I don't want that done here. Our last cath our cardio did he was supposed to do those things and he didn't! He didn't even get accurate pressures. I'm done with the doctors here, and I want to take him elsewhere. We talked about Boston, just because of their state of the art cardio team. But I also want to look in California because that's where we want to be anyway. She agreed, then she went out and called my ped. When she came back in she said she looked at some of his x-rays from July. She said they weren't pretty. It makes me nervous when she says that because his typical x-ray is not pretty, so this must be pretty bad. She said there was a lot of infiltrates, suggesting he's not breathing deep enough. She said the vent might help that at night. But again, if this is not straight up PH than the vent will just be a bandaid, not fixing the real problem.
She also said that with everything going on right now with the adoption, she asked me if I would let my cardio cath him before we go out of the country. She will talk to him and make sure he understands what needs to be done, and how important it is. Then when we get Makayla home we can go out of state.
This makes me nervous because although its a relatively easy surgery, its still surgery. And we know that Jax is the king of complications. I don't need that right before I go out of the country. I've already found some very promising doctors at Childrens hospital Los Angeles. And I'm going to get in contact with them. I'll just be waiting for pulmo to call me and tell me the game plan with the cath lab.
Oh this makes me nervous to have this happening right now!!

But on the brighter side, look at the smiles my baby is giving! They are getting bigger and bigger every day!! Just don't mind my bedhead!



Just for those that may be new to our blog, the reasons why we are so excited about smiles with our 4 year old is because he is not a typical 4 year old. A brain injury has left him unable to walk or talk, or even sit up. These smiles are just coming back after 3 years. We rejoice in the little things!!

34 comments:

Chromosomally Enhanced said...

WOW! lots to think on!! I am pulling for you all! I love LOVE Jax smiles!! he can light up a computer screen! second opinions are good...smiles

Rochelle said...

Oh those smiles are awesome, thanks for sharing them with us Jax. Praying for Jax and the issues that are before you now. Hoping you find awesome dr's in CA to take over his case too.

Jessica said...

LOVE LOVE LOVE those sweet smiles! Im glad you are feeling good about the plan. She is a good doctor.

The VW's said...

Sorry about the not-so-good news you got at the Pulmo's yesterday! UGH! That is a lot to consider! I'll be praying that wise decisions are made and that something can be done for Jax soon!

Those smiles on Jax are THE BEST!!! He looks so much like Gavin in the 1st 2 pics! Thanks for brightening my day with those gorgeous smiles Jax! Love, Hugs and Prayers!!!

Colleen said...

Those smiles would melt any heart! I'm glad they just keep getting bigger!

Skye is the Limit! said...

The smiles are fantastic!! So glad to see everyone happy!

Becca said...

Those smiles are magical, Lacey. I'm sending positive thoughts to you for all the decisions you have to make. I hope you can find the right team of doctors!

Denise said...

Oh, I love the smiles!! They definitely brightened up a scary post. I am completely confused as to what you are supposed to do with Jax. I can't imagine the decisions that you are faced with. I would be scared to do anything new right before you leave the country also. I hope someone can give you some answers that make sense to you soon!!

Junior said...

Jax those smiles are beautiful.
Lacey we are praying, that all will go smoothly.

Kelly said...

Oh boy Lacey, you sure do have a lot going on. And a bunch of decisions to make. I am sure that you will do whatever is best for Jax, after all, you do know him best. A mother's gut instinct is usually a good place to start!! Sending lots of prayers and positive energy your way!!

BTW, if you should decide on Boston, you MUST let me know, I would love to see that gorgeous smile in person:)

Stevenson Family said...

Oh how I LOVED the big smiles at the end. I'm praying everything works out perfect and you get Mikayla home soon as well.

Anderson Family said...

Love the smiles in the pictures - so cute. Sounds like you have a little plan - hopefully you can get more answers. We actually go see Dr. Day in a week and a half - can't wait to see what he would like to say on Carter's behalf. I may be in the same confused boat as you!

Reagan Leigh said...

Lots of decisions to make...praying for wisdom for you. It's great to see those smiles. I know of a lot of kids with seizures that "lost" their smiles...we were fortunate that Reagan never did. Although, she was such a cranky baby we rarely ever saw them! Hope the smiles continue...for all of you!

mom26kids said...

wow! so much to think about right now I hope someone can give you some answers. His smile is so cute!

Angi said...

Oh my goodness Lacey!!! His smiles are just perfect!!!!Love.Love.Love.

Holly W said...

beautiful smiles!
hoping your cardio gets it right this time around so you can be at peace to get Makayla!

ANewKindOfPerfect said...

Oooooh man I love that smile!!! Lacey, I know how long you have waited to see him smiling .. and I am soaking it in and smiling back at him. :)

As for the rest, that's tough! I hate that you aren't comfortable with his cardio, as that is a huge thing. I hope the pediatrician can give him a strongly worded phone call to make sure he does the right things!

Tina said...

Yes it's definitely something to rejoice about those smiles are absolutley beautiful, his whole face lights up, it also shows that Jax is making a connection, his brain knows he's happy and so he smiles. I think we need to rejoice just for that.

As for the rest, it kind of went over my head, the medical part I mean, but I do understand that there are so many decisions to make regarding what to do, and I would feel that if there is somewhere better you can do it then go there, i.e. if that is even an option, like California. I don't know if this surgery is an absolute must right away but like you said doing something right before you are scheduled to travel is a bit scary. Oh Lacey wishe we all could be of more help, I am sure you will know best what the right thing to do will be and when. Sending you love and hugs hugs to your little warrior.

Becky said...

We MISSED you today!!!

Melissa M said...

I hope you get all the cardio/pulmo stuff worked out, but in the meantime I love the smiles!!

Alison said...

Awesome smiling from Jaxson!!!

I hope you get everything sorted before you leave the country - with no complications from your little man!

Kristin said...

Aaaww - those are great smiles. He looks really good - despite the xrays ;) But holy crap - I'm nervous for you. If something happens, you can't just leave him in the hospital and trot off to Europe! Yikes.

Kele@ said...

Oh Lacey, I am so sorry you are having to deal with all of this, regardless of the timing, but especially because of the timing!
I will pray that the right doctors are found for your little guy!
His smiles are beautiful, seriously... BEAUTIFUL!

Deqlan said...

what GORGEOUS photos! love and hugs to you all Mark Samm Deqlan Logan - our new blog www.deqlanhigginsblog.blogspot.com

Anonymous said...

lacey,
Ive followed your blog for awhile now, My son is 3 (DS, airway, and major cardiac issues) We live in midwest and our local cardiac team, was in effect just tiding our son over with quick fixs, thinking a 5-10 yrs would be sufficient. Of course they didnt let us in on this little secret. SOO 2 heart surgeries later, we wised up, said NO WAY, and flew our boy to BOSTON, amazing, miracles, and never ending graditude. Will had a "repair" not another temp fix, he has a wonderful prognosis, and you would never know he had heart issues. He will need more valve work someday, but who doesnt right?? hee hee
Go, dont wait, go.
Want some practical advice? if you live in the mid-west..MIDWEST AIRLINES will flay you and Jaxon for free....there is a Ronald Mcdonald type house, you can stay in for $30....best money you will ever spend.
feel free to contact me kknipp@kc.rr.com
((HUGS)) Kim
Will's carepage is HeWill

ParkerMama said...

So.....tell me about these docs in Cali....

And those smiles......melting my heart.


Tammy and Parker
www.prayingforparker.com
@ParkerMama on Twitter

ParkerMama said...

Oh, and would you email me your pulmo's phone number? I really like the guy at PCMC, but right now I'd like a second opinion as well.

Thanks!

Tammy

The Browning Family said...

Lacey -
My heart is heavy for you. I am crying right now over Jaxson and his sweet sweet smile. Remain strong, you are an inspiration to many - but most importantly, to Jaxson.

Our Justus (with Ds) had open heart surgery here in Seattle at Seattle Children's. It was an excellent experience and the surgeons are quite gifted. Do some research and if you would prefer to be in Seattle, we will gladly open up our home and help with the rest of your children. We live a ferry ride away from Seattle and my hubby works within the city - so it would be no problem.

They also have a Ronald McDonald house within two blocks of the hospital.

Seriously - think about it. Unless of course you have friends or family in L.A. - then that would make sense. Just want you to know that we MEAN IT! If you do some research and like what you hear about Seattle - use our home and our desire to care for your kids!!!

I'll be thinking of you...
Charrissa

Chris A said...

I have been reading Jaxson's blog for quite a while now but have never posted. We have a 17 yr old daughter and live in AZ. She has TOF, PA, pulmonary hypertension (pressures in the 80's) and asthma. We take her to Luciile Packard Childrens which is attached to Stanford. I beleive they have saved Becca's life by thinking out of the box. I am wondering if you have considered sending Jaxson's records to the PAH team there?
I also wanted to mention another child's blog I have been following. The little girls name is Moriah. Here is the URL to her blog http://momentswithmoriah.blogspot.com/
she has been treated at both LPCH and LA Children's. Maybe you could talk to her mom. I know the frustration of being in a place that does not have the experieince dealing with complex, "out of the box" kids.
with Hope,
~ Chris A ~
Atherton2@cox.net

Shelly Turpin said...

Still hoping for the best - and I LOVE his smiles. I love kissing little necks. :)

Meghann said...

Love those smiles!

Melissa said...

AAAWWWWW!!! That smile just made my night!!!! I love that little man so much!

I'm so sorry that you're going through all of this. Hang in there & I'll be keeping Mr.Jax in my thoughts & prayers!

Again...that PRECIOUS smile made my night! LOVE YOU SO MUCH JAX!
xoxo

DevonLeah said...

thanks for taking the time to explain!! Precious pictures...

Cheri said...

Oh Lacey....just look at those smiles!!!

I am behind in blogging so had to go back a bit...oh Lacey I am so sorry you guys have been going through this, and have had such a scary time of late. I read in your most recent post you are back home, I am so glad. You will be in my prayers that he remains stable and the smiles continue to abound!!