Wednesday, August 12, 2009

Here comes the c-pap

First I have to tell you how proud I am of my gorgeous, almost 8 year old autistic son. He has been going to school sooo good every day. No fighting, I just drop him off at the curb and he goes. He is on anxiety meds now, but they shouldn't be in his system yet. I think we might be able to catch up a little this year. Help him so he's not so far behind his peers.
He wanted me to take a pic of his Jaxson hairdo.

Look at this hair? I see pics of Jax with long hair and sometimes I want to let it grow again. So here's the poll. Long or short. He has the most gorgeous hair, but the fo hawk is kind of his doo now.


We are starting Jax on c-pap. Yeah (insert heavy sarcasm) Dr. Lungs agree's that he has lots of extra fluid in his lungs. That probably means its from the SVC and its starting to gather in his lungs. I'm going to look up Boston right now and hunt down this team that is looking at his case. This is getting ridiculous. I've had enough now, I'm at the end of my rope. If Boston says they can't do it, then we have to keep looking, and Jaxson isn't getting any healthier. Friends out there, if you have a surgeon you know is great, ask for us, or let us know. Michigan is one thats supposed to be great. I believe I called them and didn't hear back. Maybe I need to call again. I don't feel like Jax fight is over, but unfortunately, my ped, who's always been on my side, seems to have given up. She thinks SVC surgery is to risky, before even hearing how it will be done. When we mentioned that traching him may be neccisary (spelling).She said no way, he's been through enough. Isn't that for me and Ray to decide? I don't feel like the fight is over yet. So I'm off to hunt down some doctors in Boston. Wish me luck!

27 comments:

Veronica said...

Lacey Keep fighting and searching for new docs for Jax. His fight is not nearly over! Glad Tanner is doing so good! Miss you guys!

The VW's said...

I'm so happy for you that your son is doing better with school! This must be such a relief for you and him! And, I love his hair like that!

As for Jaxson's hair, he looks adorable however his hair is! I usually don't like long hair on boys, but Jax looks adorable with long hair! But, his hawk is just SO JAX!

Keep fighting for Jax! Call EVERY doctor out there! You can't give up just because others have! I pray that someone gets back to you soon with good news! Remember that God's timing is always better than our own and He has this all figured out for you and Jax! I'll be praying! HUGS!!!

Anderson Family said...

Tanner looks so good - I am so glad that he is going to school easier these days.

I like Jaxson's hair now - but his long hair is amazing as well.

I think you should totally call Boston - really how many months has it been? And don't give up on him yet - he is still fighting!! I'm sorry I don't know anything about other surgeons or hospitals - wish I did.

What was the feeling about getting cardiology involved? And C-Pap doesn't sound like fun - do you think that Jaxson will leave that on? Praying for you guys and sweet Zoey as well!

Junior said...

Great news about your son and school.

Lots of prayers that you will get answers soon.

Ria said...

Nice do! I like Jaxson's hawk although his long hair is adorable too. Good luck with the search. We'll be praying.

Tausha said...

What a good looking kid he is, he's going to have the girls knocking down the doors. Glad he is doing better, boy you have alot on your plate, you amaze me. I love jaxson's hair as well, I really like it long but then I have always liked the long haired look on guys. I wish I could help out in the Dr. department for Jaxson but I will keep my ears open.

Trina and Jophie said...

OH yay for meds....I'm so glad he's settled for you. One less fire to put out and your right he's absolutely cute as a bug!

LET IT GROW! That's my vote girlie! I LOVE LOVE long hair on little boys especially if they wear it well...Jax definitely wears it very well. Jophies used to be clear to his butt...I absolutely loved it and at times I still let it get all long and wild....love it! ;)

As far as the Cpap I have to say for Jophie I love it. It truly saved his life last time in the PICU and kept them from putting him on the vent.

I was completely floored as to how much it really helped him. He responded so well they were going to send him on on Cpap.

His CO2 levels were through the roof so they repeated the sleeping CO2 blood level testing but, they came back within normal range.

He never really went to sleep because a "wild agressive proceed at the speed of lightning" PICU doc was muckin' around with his steroids which had Jophie all bent out of shape so, I'm not really sure how accurate that crazy test was.

What I did notice was as he continued to get better and the Cpap kept doing its thing the less he tolerated it making me think "while well" and while the lungs are open he possibly didn't need it full time.

So thats our experience with Cpap.

I sure hope you can find a doc. Your looking for a Ped.Cardio correct? We have a really good one and an even better one still stepping in soon if not already. I really like the new fella taking over the old docs practice. He was a ped. resident waaaaay back when and last year while Jophie was in the PICU he had just accepted the position but first had to move his family to Cincinatti to finish a "specialized field/care" internship at Cinci Childrens but, the practice he's taking over is in WV....

Not sure if that's an option for you but if so I get info on this end for you..

Gotta scoot!

Tall soon...
Trina and Jophie

Groettum Family said...

I will ask around and see if I can find someone for you at the Mayo Clinic...and it is up to you on what is "enough" for Jax...even if you love your ped, maybe its time for a second opinion?

p.s. keep the hawk :)

sturpin said...

Don't know if it would help, but this is Bella's heart surgeon:
http://www.debakeydepartmentofsurgery.org/home/content.cfm?menu_id=36&pageview=fac_item&fac_pk=201&view=pt_brief

The Hortons...one day at a time. said...

I know there is a GREAT children's hospital in chicago. It's called Childrens Memorial Hospital, they might be able to help. And a trip to Illinois would mean we could meet!!! and you would have visitors and someone willing to bring meals!!!

The Hortons...one day at a time. said...

Oh and Malachi's heart surgon at Rush University Medical center in Chicago was AMAZING. I can get you him info if you are interested!

Anonymous said...

Hi. I am friends with Amy Mason-Mann, and she told us about you in a recent email. I think your kids are so beautiful, and the pictures brought tears to my eyes, mostly tears of joy, because of all the love that I feel when I read your blog and see pictures of the kids. I pray that your little son is going to be ok, and his sweet girlfriend too. You are an amazing mom. Take care, Meri Fleischman fluteplayer1975@yahoo.com

Alison said...

So glad to hear your big boy is doing much better with school drop-offs.

I hope you get some answers from Boston, or find another surgeon, and I hope the CPAP isn't too uncomfortable for Jaxson. My girls always hated it, but they were teeny tiny then.

My vote for the hair is mohawk. SO cute!

Aspiemom said...

I'm so glad your 8 yr old is doing well. My son has Aspergers and I remember when things started going a little smoother and I wasn't having to deal with so many melt-downs, etc. It was wonderful!

I vote for short. But I'm partial to shorter hair on guys.

Suzie said...

LUCK! He's cute no matter how his hair is!

Emily said...

You keep fighting... I agree, that is your decision. I pray that you or someone can find you the right doctor and information.
YIPPEE for the school situation! Hope it stays that way!
Beautiful boys!

Stephanie said...

You are so right, I've said it over and over. If they aren't as passionate about Jax's future as you are.. #&@# em!
Find someone else, be pushy, be aggressive, never give up.
You're his Momma, when Jax fight is over, you will know it in your heart.
I pray you never know that feeling. Keep fighting and we'll be here to have your back all the way.

Tina said...

You must keep fighting for Jax, be agressive about his cause and you will definately find your answer in someone soon ...a fight is never over till you are sure it's over and I pray with all my heart that that is never the case for you. Sorry I am at the other end of the world so can't do much on the doctor hunt although we have great doctors here...
I pray pray pray for Jax and really hope the answers come soon. You are an amazing mother!
Love the long hair for sure!!!

Conrad, Megan and Our Precious Keaton said...

Love Jax with long and short hair! He has beautiful hair!
I hope Boston or Michigan get back to you asap - heck I say call the president!! Anything for little Jax! So happy that the anxiety meds are working! God bless and big hugs! Megan and Keaton

Denise said...

Jax is way too cute with his faux hawk!!!! Keep fighting mama!!! I have details for Ray about the ride along....but too much to write down so I promise to call you in the next day or two while we are working our way home. Hope to see you soon!!

Shari said...

Keep fighting Lacey! Dr. Ed Bove at Michigan Children's is awesome! Have you tried Children's in Seattle? I know they have a huge heart team there that is excellent.

Jeana said...

I vote the mo hawk, but he will look scrumptious either way! Good luck with your search, there has got to be someone out there for him.

jjpsmommy07 said...

I agree, who is the doctor to say, it is definitely(or should be)up to the parents. Hugs to little Jax, I love his hairdo, either way.
Glad Tanner is doing well in school. There has to be someone out there willing to help you out!

Maureen said...

http://www.ochsner.org/find_a_doctor/doctor/dennis_m_mello/

Lacey you need to try to reach out to Louisiana. This is the DR that fixed Penny and Dillon and then he moved on us to New Orleans! It says right in his bio, "Clinical Interests: Complex neonatal and pediatric cardiac surgery, HLHS, adult congenital cardiac surgery" "COMPLEX" Lacey!!

Good luck - mo

Alyson said...

Hooray for Tanner!!! I know how rough the first day was for you.

I would let Jax's hair grow out again.....His hair is way too beautiful to not let it grow out.... :0)

Ant recently cut Avery's curls off (while I was at a b-day party with Evan....I had no clue he was going to do it) and I was ok with it, but boy did I miss those "pretty princess curls" he he he.....They came back about 2 weeks later......Now Ant is talking about cutting them off again soon...... :0P

Keep on fighting for Jax!!!! Don't allow his doctors to get inside your head and convince you that his fight is over......You will know when enough is enough

Love

Baylee and Blair's page said...

You have to keep fighting for him! I know I've had to with my girls. Dr. Mullen is a WONDERFUL Cardiologist/Hypertension Specialist in Boston. I can give you their info if you e-mail me! Direct numbers and e-mails for them as well!!!!

Big Hugs - Tiff

ParkerMama said...

Who's your Pedi?

I know nothing about SVC's, but I know Parker's trach saved his life.