Monday, March 23, 2009

How do you explain the R word?

My 10 year old is in this sudden habit of using the R word, I don't know where he heard it, but its caught in his head. Every time I try to explain why you don't say it he doesn't seem to understand. Today when I picked him up from school he asked me, "Mom, is Jaxson mentally retarded?" I guess he had a discusion with a girl at school that knows Jax is DS. He seemed to understand it better from a girl his own age than his mom. Maybe I spend to much time trying to say it in words that he will understand, and the girl already speaks his language, I don't know, but it definitly helped.


Jax saw his hemo doc today. He said that he definitly has SVC syndrome, or swelling in the face and arms from the SVC being narrow. The only way to fix it is either in the cath lab, or open heart surgery. He said he was going to talk to the cardiologist. I don't like that idea. The cardiologists are the ones I hate the most at the hospital, they do nothing for Jax. And his hemo doc today gave me an idea why. He said that he has a quality of life so we need to fix this problem. I don't think his cardiologist thinks he has a quality of life, afterall, when Jax had the brain injury he was the first to say we didn't need to fix his heart because he wouldn't survive.

We are finally getting something out of Jax, a stronger head, a little bit of a smile, we can't give up on him now. He's come so far. I'm glad that my pediatrician and hemo doc are on my side, they are willing to fight with whoever they need to. And I'm going to call the palliative care team that follows Jax because they are patient advocates as well.

They are going to message the cardiologist that does heart caths and see if it can be done there, if not, we are looking at open heart surgery, probably in the next couple of months. I will do it for him, because he did great last time, he just needed longer on the vent, because of his lungs, but did great.

So we are going to go on vacation, and enjoy it a little more, knowing that when we get back there will be surgery, either a heart cath or open heart, we'll see.

13 comments:

JRS said...

Have a great vacation. You deserve one. I'll be thinking about you guys as you progress with the heart stuff. ---Jen

Melissa said...

Thank you so much for the update...I was getting a little worried!
That is so great that you'll be able to go on Vacation w/a better piece of mind!! You SO deserve it!! I'm sorry about the surgery, but at least he'll be on his way to feeling better;)

That's awesome that you found that advocacy dept! Jax has come SUCH a long way...he deserves to be treated just like ANY other child!!
WOW, explaining the R word, that has to be rough...I have no clue?? WOW...KIDS & SCHOOL!!
Sending Big HUGS!!

Anderson Family said...

Wow - the R word is a tough one. I haven't heard my older son use that word yet but I am sure it won't be long before I have to explain that one to him.

I'm sorry about the upcoming possibility of surgery. No one likes to go through that one - but if it makes him feel better it will be worth it. Good for you for sticking up for Jaxson - of course he has quality of life - look at him! I wish doctors could see our kids through our eyes - they are beautiful people and very special spirits.

Have a great time on your vacation - it sounds like it will be wonderful. Tell Jaxson he better be good so you can enjoy it!

And thanks for the plastic wrap idea - that's a good one!

Kristi

Junior said...

Hope you have a wonderful vacation and can really rest and relax.
Great to hear that you have such good advocates for Jax, he deserves it. Jax you have an awesome momma.

Big hugs, Heidi & Junior

Kim Rees said...

Glad to hear you are finally getting some answers! Try to enjoy your vacation before the surgery and all the stress that goes along with that. I know how you feel. You are in my thoughts and prayers.

Hope said...

I don't know what to say about the R word since there is question on where my son is.......

But I wish you a great vacay and lots of thoughts and prayers!

stephanie said...

Wow, it's deja vu..lol.
I can't believe the way some people react to our children. I've had doctors ask how aggressively I want to treat simple infections because he has DS. I mean come on people! Ok, so he has DS, and he's had a brain injury, but he's still fighting, every day. Why shouldn't we? How can such important decisions in our kids lives be made by someone who has no concept of their life? It's scary really. We are so lucky that the vast majority of our son's doc's are amazing. You keep right on fighting Lacey, you are his voice and with the kind of love and care you give, one day Jax will have a voice of his own.

Michelle said...

Oh my dear friend...I am so glad you guys get a vacation. We have one booked for May (Cali too...and hopefully meet Zoey and Heather as well) but with the job situation we can't think that far ahead, so we just concentrate on today and tomorrow, but we can hope and pray we make it to sunny Cali! I hope you all have so much fun, enjoy the sun, the beach and all the rest...and I pray everything else falls into place when you get back. i know the feeling about doctors that look at your child as a # or file instead of a precious spirit...I hope they will understand and help you. Please let me know what we can do when surgery gets closer...now that we know we aren't so far away from each other! :)

Conrad, Megan and Our Precious Keaton said...

Hello dear Lacey and Jax, I hope you all have a wonderful holiday and that the weather is great and the boys have the most awesome time! Goodness knows you all deserve it! Jax, I will keep you in my prayers for the possibility of your up coming surgery - with God at the wheel - there is nothing to fear! He will protect you sweet boy! Kids will be kids I suppose - just today a little boy in my street asked me "why do you have pimples on your chin" - they are very innocent arent they? Its very hard to explain things to them at that age (I have a niece who is 8)..... Anyway - God bless and bring you all back safely! Hugs to Jax! Megan and Keaton

Larkinsmom said...

Prayers for a safe and wonderful journey.

Here is a tip for you. YOU ARE A MOMOLOGIST and you trump and other OLOGIST that should presume to make decisions without you.

The VW's said...

Why is it that kids will listen better to their friends than us? I suppose we were the same way at that age. At least she was able to communicate with him in a positive way!

I pray that your cardiologist will be helpful and just do the job they went to school for! Aren't they supposed to try to save lives and just keep their feelings out of it??!! Jaxson has such quality of life! His family loves him very much and he is a happy little guy! What more could you ask for?!

Hope you can enjoy your vacation and not worry about upcoming surgery, etc. You guys deserve a great time away!!

Stephanie said...

You could always come to OK, our ped cardios are great with children with Down syndrome

Trina said...

Ahhhh vacaaaaaaation......Sounds heavenly....Enjoy!

Trina and Jophie