Monday, January 3, 2011

More appointments, no more answers.

This is a novel of a post tonight!

A lot of appointments and stuff to talk about with Jax. He had an appointment with GI today. He hadn't seen her since June of '08, so a lot of stuff for her to update. She said he does have dysmotility. She also said that its better to keep him on this formula, and not the pre-digested stuff because....reasons that even I didn't understand! He is relatively stable GI-wise. His feeds have to be run very slowly to prevent gagging and wretching, and he still doesn't poop on his own. A liquid suppository every night keeps him cleaned out. But this is stuff we can deal with, stuff that really can't be fixed. We can live with that, been doing it for 5 years now. She asked how he was doing all the way around. I told her about his chest x-ray and lungs not looking good, even with the vent. I told her that I was considering seeing another pulmo, just to get a second opinion. She said second opinions are always good, but that my pulmo is the best, and we won't find one better. I definitely agree with that. I don't like any of the pulmo's at the hospital, so I wouldn't even know where to go! I told her maybe what I needed was a second opinion in cardiology. Pulmo thinks his lung problems are heart related, cardio says his heart is fine. GI didn't like how his heart sounded when she listened to him (she has a son with a major heart defect)
So do I have you totally confused yet with all these different docs and opinions?

After GI we went to our ped to get a follow up x-ray with the increased vent settings. The x-ray actually looks worse than the one in December!
I'm starting to freak out here.
The problem is right now he looks ok. He is getting a little bigger, and he's doing some more stuff developmentally (thanks to a certain princess!) But if your with him every day, you see the subtle stuff. He has periods where his color will just drain from his face. I will check his sats a billion times, because seriously, he looks scary. He turns blue when he cries, and when his oxygen comes off. He is sleeping more. He is now taking another nap later in the evening, right before bed. I'm not kidding when I say if he gets a cold, we are in deep doo doo!
My ped called pulmo today after the x-ray, she said she doesn't know what to do. She doesn't know the next step, she wants us to talk to cardio. I'll tell you what cardio is going to say. He is going to tell me that his heart looks fine, but that he can take him to the cath lab to get a better look if we want him to. My ped listened to his heart today and agreed that his murmur sounds much louder.

I think I need some fresh faces to look at Jax. I need to start looking for specialists in Cali, where we are hoping to move this spring. Boston is always a good option, because lets face it, they are the best in just about everything!
For some that have asked, he has lost a little puffiness in his face. Now that we know that its fat and not fluid, we have taken down his calories in hopes to get him to a lower weight. Its not easy to breathe, and move, when you are a chunk in your face and chest. (Still have no idea why he only gains weight there!)
The other thing people have asked is why don't they know what to do with his lungs. Here's the problem...Jax doesn't just have pulmonary hypertension. He doesn't just have congenital heart disease. And he doesn't just have reflux and aspiration problems. He has all the above, plus lung damage from being traumatically intubated a billion times, and on high vent pressures when he was really sick. All these together are a bad combo, and I think some docs just don't know what else to try anymore.
I also had a spat with his ketogenic dietitian. I had emailed her asking if the diet contributed to the fragile bones. She said that if they aren't on the right supplements, that it could happen, and that Jax didn't get seen in their clinic as much as she wanted!
I freaked. I told her I'm not a mind reader. No one ever told me that he had to be seen every 3 to 6 months. I didn't even know there was a clinic. The nurse practitioner that runs the diet never once called me, in the almost 3 years he was on the diet! My ped was furious as well when I told her. She tried to keep in contact with the dietitian. She rarely returned phone calls, and so my ped did labs herself and supplemented him as best she could! Right now we have doubled his vitamin D, and I need to be better at getting him in his stander every day to work those legs.

Sorry if I have you totally lost, or totally bored for that matter!
I'm just worried about my little man, and trying to find the right docs to try and help him as well!

19 comments:

Anonymous said...

Praying for Jaxson and some answers! - Maureen C

ParkerMama said...

Lacey,

Is there a chance that Jax could be aspirating on his saliva? That could be making his lungs look bad too.

If you wanted to get a second opinion locally I would try Daftry. He's a good Pulmo.

Hoping you find some answers and solutions.....soon!

And about the cath lab. Oy.

Shari said...

That is a lot for a Momma to have to take in. I can only imagine that the decisions you have to make are so, so difficult. I am praying for Jaxson and you.

Amy said...

I like the fresh eyes idea. Problem is who and where?
Praying that you and Jaxson get some answers and piece of mind very soon.

mandd3 said...

How about Houston? At least it is closer than Boston. I hope you find a cardio you can have confidence in soon.

MrsFought said...

I understand your pain!

I hope some fresh faces bring new results!

Praying!

Jaxson is just about the cutest lil guy ever :)

Michelle and Sean said...

Lacey, I'm sorry things were not answered at your appts. That is never a good feeling. I really don't know a great cardiologist here but PCMC just got a new pulmo that Dr Murphy referred us to. His name is Dr Gershan. We saw him once and he seemed really nice and even called us the day after the appt. Anyway just thought I would let you know about him. There isn't really anything I can do to help other than let you know if I run into any good doctors.

We also saw Dr Daftery and liked him as well but Dr Murphy wanted us to see this other guy. So we did.

And you know we loved Boston!!

Prayers for answers or at least a direction to a great doctor.

Cathy said...

No advice...just prayers and cyber-hugs!

Kristin said...

I think your post title says it all. Good luck, and keep him home away from germs as much as possible :)

LibsMommy said...

They always told us Lib would pass away from lung damage not her heart and that is exactly what happened, so I understand the pulmo and cardio pointing fingers at each other. I think there is just not a lot the pulmos can do for our kiddos and we never want to accept that so they point us another direction. I'm always praying for Jax. Lots of luck with the Drs in the upcoming days. Stay Strong Jax - Hugs -

The VW's said...

Praying for you and Jax! I would definitely try to find another cardiologist to check Jax out! It doesn't sound like they have done a lot to help you in the past and you obvioulsy need to have someone on your side! Keep us updated! Hugs!

Scrappy quilter said...

Awe Lacey sending lots of hugs. I hope you can find the answers you need for Jax. I can't even begin to imagine what you are going through. Hugs

Becca said...

I'm very angry about the ketogenic dietician's comment to you. What a b****. Unbelievable that they never followed up with you or even told you that there should be follow up!!!

Also, it sounds like a new cardio is in order. Hope you get some better answers soon.

((hugs))

Rochelle said...

Praying for you guys. Hoping that you can get in with someone else that can give you more info on him.

Anonymous said...

Lacey,

I'm in the SoCal area and I'd recommend both UCLA and Boston.

We have a son with complicated care and UCLA is willing to work with Boston which has been a great combination for us.

Another idea is an opinion at Cedars Sinai. They often have different recommendations than either of the other two facilities.

Many of these places will offer a records review which can also be very beneficial.

If you have questions, feel free to email me
sarah (at) meditscape (dot) com

Take care,
Sarah

Stacy said...

Praying for Jaxson!

We are out here in Southern California and if you were coming our way, I can give you lots of info on doctors in the area. Our son sees and continues to baffle the Pulmonary team at Rady Children's Hospital in San Diego with an on-call team at UCLA.

We wish you all the best in 2011!
Love,
Cameron's Mommy, Stacy

Lacey said...

Stacey, I do want to talk to you to! Do you have a blog? It won't let me go to your profile to see who you are. If you have a son baffling pulmo's, I'd definitely like to talk to you!

Stacy said...

You can e-mail me personally at cameronthebrave@yahoo.com Cameron does have a blog too but not on Blogger. His webpage is http://www.carepages.com/carepages/CameronRoy/updates
I would love to talk to you about the journey we have been on...

Melissa M said...

I'm sorry you are so frustrated with Jax's drs, but I totally understand. Seems like there are just too many people and they aren't on the same page. I hope you get some answers soon!