Wednesday, May 19, 2010

Pulmonology appointment

Today we finally had our pulmonology appointment. The good things are, she said he sounded pretty good, she gave me a perscription for the robinol, and Tobi is our new best friend every other month! The bad things are, she has no idea why he's so junky, she thinks it may be his heart, YIKES! She got our echo moved up to next week, So thats great. My ped had been saying she wanted to try and get it moved up because she thinks his already loud murmer has gotten louder. You should hear it, its impressive! Pulmo said the same thing and she's wondering if something heart related is going on. We are in big trouble if its heart, because cardiology here is famously aloof! They don't have to be nudged to get things done, they have to be punched to get things done. So we'll see what the echo shows, and hope it gets accurate pressures, because they could still be high too. We are just wondering why his saturations are still low, when his lungs sound ok and the x-ray is not any different than normal. Who knows, Jax makes up his own rules!

I'm still trying to get a hold of people, and get addresses so I can get the auction items sent out. So if your still waiting you can email me personally at laceyrugg@hotmail.com. The auction seems like a simple fundraiser, but it is indeed a lot of work on my end, so bear with me! Also, since the bows were so popular, we have decided to sell those continously on Makayla's blog as an ongoing fundraiser. So if you didn't win them and want some, you can still buy them. I just need to figure out a good way to post them on there. If you know how to link a post so you can click on it in the sidebar please let me know how to do it! I hope to have them up in the next day or so!

22 comments:

Sweet Pea's Mommy said...

I am glad that the echo got moved up and you got the meds you were wanting, but I'm sorry that you didn't really get any answers. I'll keep Jax in my prayers!!!

Rochelle said...

Glad they got his echo moved up so you can find out what is going on with him. Prayers that it is something easy!

Skye is the Limit! said...

Just found your blog!! I am officially "following" your story. Beautiful little boy you have!

Stevenson Family said...

Lacey, I hope you guys get in sooner than scheduled. We sure know how that goes. We just ended up heading to the ER. Not my first choice but our babies have needs!!

Stephanie said...

To link a post in your side bar....

from dashboard, add the html gadget.
then from the post you want to link, copy the url
then like you are linking in your blog, just c/p the url

oh, and hope you get some answers from the echo

Becky said...

Good luck with his echo. I really hope his heart is okay. Is Boston still an option?!?

ANewKindOfPerfect said...

Thank goodness the echo got moved up. I will be waiting nervously to hear the results. I hope the Robinul helps Jax, it really helped my Peanut!

I will be looking for some of those Minnie Mouse bows to buy, for sure. :)

mandd3 said...

I love the robinul.It works great for my son's needs. I hope you get some answers from the echo and that it is something completely and easily fixable.

Evie's Story said...

Hope you can get to the bottom of what is going on. Its SO FRUSTRATING not getting direct answers and being left to wonder!

stephanie said...

Hope Jax is OK, he really doesn't need another issue, gosh!

And I loved those lady bug hair bows, Hope they are going to be for sale. Miss Em is our Ladybug!

Anderson Family said...

I'm glad your echo got moved up - hopefully more answers soon! At least you have a guy who can get an echo - unlike my kid who can't seem to get one.

We like Dr. P. - she moves right on things and gets things done fast. She is very blunt and straightforward though - kind of caught me off guard when she kept telling me Carter could die from his problems. Scary!!

Junior said...

glad they moved the echo up, hope it will give you some answers.
We love tobi also, robinul we used for awhile but with Junior it dried up his lung mucous and it got too thick for him to clear.

Michelle said...

Eww for heart troubles...glad the echo is moved up. Tobi...he's a good guy. Very good results for us. Hope it works well for Jax. Keeping you in prayer.

ParkerMama said...

Did your Pulmo mention allergies? Parker's heart rate has been higher, and his O2 needs higher as well. Our Pulmo said that kids with trachs do worse with allergies.

Sorry about the whole Cardiology thing.... :(

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

Phoenix's Mom said...

Hey strangers! I needed to see that amazing little face! Glad to hear echo got moved up. Hugs and prayers!

The VW's said...

Oh Jax! You love to keep everyone guessing, don't you?!

Praying it's not a heart thing, but if it is, that it's something easy to fix! Love, Hugs and Prayers!!!

Emily said...

Jax is always in my prayers. So glad the echo was moved up a bit.

Sasha said...

Well good that you got some good news. Let's hope the echo goes well. Fingers crossed.

Michelle and Sean said...

I will keep Jaxson in my prayers. I really hope its not his heart. I totally agree with you about the cardiologists here. Maggie has a heart rate in the 40's and 50's but they don't want to do anything until she gets diagnosed. Not that I want anything major done anyway but its like they don't really care about her because they don't think she stands a chance at a good life anyway.

I am happy though that they moved the echo up. Because I know you are going through this adoption and things are stressful but if there is something wrong with his heart you should totally consider having it fixed in Boston. They have the best cardiologists there. Anyway just throwing that out there. I just really hope everything is okay.

I will continue to keep Jaxon and your whole family in my prayers.

Michelle and Sean said...

Oh and just an FYI if there is a need for you to go to Boston for Jaxon I know some place that will help you get there as we have need to get help with our travels to other states. Let me know if you need any info.

jturpin said...

My PCP told me and she was right that pulmo and cardio like to blame each other. Crazy - would love to get them both in the same room :)
glad your echo got moved up - it's easier to fight with facts

Karen Griffin said...

Hi. I just came upon your blog and I've enjoyed reading it. It actually helped me remember some moments with my big guy (my hero) who I just lost 8 months ago. Staying "connected" is where I feel close to Jared. So, I just want to say Thank you for having this blog, I really look forward to reading a lot more here. It's nice to meet you. Hope you have a good day. Your Jaxson is a cutie!