Tuesday, January 18, 2011

Still working on the tabs at the top of my blog. One day, they'll be done....hopefully!
Also going to change my header a bit. Trying to find a good title that still includes Jaxson's fight. Remember, I'm not all that creative!

This is an update post on all the boring stuff. The princess had her follow-up ENT appointment after failing her sleep study. She is having her tonsils and adnoids removed Thursday, Feb. 3. She'll stay at least overnight, longer if she refuses to drink! (I forget what a life saver the g-tube can be!)

Jaxson, of course, is a lot more complicated! After I posted that we were going to admit him to tweak the vent, and see a new pulmo for a second opinion, things have changed!
I talked to my pulmo over the phone and told her the plan. She said she was fine with me seeking a second opinion, but she thinks admitting him to play with the vent is a really bad idea for him right now. After talking to her for an hour, I remembered why I love that women, and getting a second opinion for pulmo is now off the table for me. She explained what she thinks is wrong with his lungs, and why cardio needs to step in. I'll try to explain it in laymen terms.
The crap in Jax lungs is not atelectisis, its opacities. Which means its not a problem with properly ventilating him. Messing with the vent will do no good. What it means is that he has major back flow from his lungs back into his heart. Its either from an old clot that has clotted off a vein near his heart, or all the veins he's clotted off in his chest. Whatever it is, blood is not flowing like it should, causing fluid to back up in his lungs. No neb, or vest treatment is going to help this. Cardio needs to look at his heart, and his veins, and see if they can find the problem of the narrowing. The only way to do this would be in the cath lab. I don't want to take him to the cath lab here, they've already proven they aren't good at being thorough, and I'm not putting him through it for nothing. I talked to my ped yesterday, after she talked to pulmo, and she wants to think about this for a bit, and talk to a few doctors first. I completely understand. You see, if the problem is what pulmo says it is, its not good news. Everything to fix this problem would be extremely risky. If it can be done at all. We are talking probably having to put him on bypass, to work on opening up his veins. If they rupture a vein, he dies right there on the table! So we'd have to weigh the risk of surgery, over the risk of leaving it. If we leave it and he gets really sick and ends up in the PICU, then we can't fix it, he would be too fragile for surgery, then we are screwed anyway!
This is what I think....everything we have been doing since we found out he clotted all these veins off, has been a band aid on the problem, but not the fix. Traching him, venting him, they are all band aids that fix the problem for a little bit, but then it comes screaming back!
So this mama's not playing games anymore. I'm going straight to the top. I've contacted the top two childrens hospitals. Childrens hospital of Philadelphia, and Boston. We'll let them look at him, and see if they can tell us what the problem really is. CHOP has already contacted me, and a specialist is going to call me in the morning to discuss his case! We'll go wherever we have to go. Even if we have to eat Ramen every day to pay for it!

18 comments:

Rochelle said...

Praying that you get some much needed good news on Jax and how they can help him out East. Also, praying Arina's surgery and recovery goes as smoothly as Alayna's did, are they doing ear tubes too while she is under?

The VW's said...

You have your hands full! Hope Arina's surgery goes well! And, I hope you get some great docs on your side to help Jax! Sounds like scary stuff he is dealing with! I'll be praying for him and you, and that this can all get figured out and solved soon! Love and Hugs!!!

Kellianne said...

CHOP is really the very best there is. We've had a good experience there with their cardiology department. We also have a friend who had a micropremie who is getting really good care there. You're welcome to stay with us if we're still here if and when you come out.

ParkerMama said...

Lacey, we need to talk on the phone. When is good for you.

I've been so worried about doing another cath out here as well. I have a friend who is a nurse pract. and her husband is an anesthesiologist. They took their doctor to Boston for her surgery. They are convinced that they are the best there is.

She's been trying all along to get me to get Parker out there, but I kept thinking what if we get out there, without the rest of Parker's team, etc.?

I'd love to talk with you about this as I've seriously contemplated taking Parker some place else for his next cath.

It reallly worries me that Day says his heart looks fine. Has pulmo called Day?



xoxo

Tammy and Parker

Sweet Pea's Mommy said...

I'm so sorry that these decisions are so tough! I'm hoping that you get some great answers from Philadelphia and Boston!

As for Arina's surgery, good luck!!!! I think I somehow missed the details of her sleep study findings. Seeing as we are getting Sweet Pea's results in another week, I'm curious to learn more.

Thinking good thoughts for you all!!!!

Erin said...

Love you, love your tenacity. Love those cute kids, even though I've only met Jaxson a couple times!

Holly W said...

praying praying praying praying for you!!!!
I'll be thinking of you tomorrow morning...eager to hear the big dog has to say over from CHOP...
and they drs here are already talking about taking B's tonsils and adenoids out when she's 2...

Denise said...

I feel for you!! I had such a struggle with the decision of whether to put a G-tube in Ella or leave the ng tube in and that was such a hard decision but NOTHING compared to the decisions that you have to make regarding Jax. But there is no one more equipped to make them than you and I have no doubt that you will do what is best for Jax. Here's hoping that CHOP can help you!!

LibsMommy said...

Having tonsils out is the worse thing ever :\ poor Arina, I'll pray for a great outcome. I'm sorry about all the stuff you have to go through to get Jax the right care. I remember it all to well and it sucks but stand your ground, do what YOU feel is right. Your a good mommy and what you think is right is right for him. I'll pray for good news and that it is something they can fix on the heart. Sweet boy is always in my thoughts and prayers!!

Kiley said...

Praying you find some answers and good news on Jax and that all goes well with Arina's surgery.

Kelly said...

Praying for some answers and much needed good news!! Jax is a fighter!! Hope all goes well with Arina's surgery! Thinking of you all and sending lots of prayers & love from MA!!!

Don't forget, if you end up in Boston, be sure to let me know!

*Tasha* said...

What about Jaxson's fight & Arina's Love? or journey, or peace ?(her name meaning) or adventures... something?

Hope CHOP works out!! The health system is just laughable here in the US :(

Alaina and Kyle said...

Good for you!! I think you have made the right decision. We will eat that ramen along with you :)

Vivielle said...

I hope that CHOP and Boston can give you some answers. I'm praying for your family.

Melissa M said...

I hope you get the answers you need from CHOP and Boston!

Melissa M said...

Oh I forgot about your question about transitioning to the straw cup. We used the honey bear to teach her how to use the straw. For the last couple of days we've been offering milk with dinner in her straw cup and she's been drinking about half her milk that way! Once we get that one all out of the cup we'll work on the other bottles. I have more time in the evenings, so that seemed like a good place to start.

Jen said...

CHOP also has a DS clinic if you didn't already know that - we are taking our son there next week-

Jamie said...

Do you have a place to donate to Jax's medical needs?