Tuesday, May 12, 2009

More bad news

Man it seems like lately I only post depressing stuff. Unfortunatly, here's a little more. Jax had an EEG today. You know the drill, they hook you up, hope you fall asleep, and watch it for about a half hour. Then come unhook you and you go home. Well about 15 minutes in (Jax was wide awake still) a resident came in.
Yeah, thats wierd to see a doctor at an EEG appointment. So he comes in and asks how he's doing, so I tell him, he's kind of both, in some ways he seems better, holding his head up and starting to smile, but I'm also seeing more seizures, and he said the EEG tech called them because she was concerned about his EEG, basically, it looks like crap.
The attending said it looks better than the last one he saw... uh the last one this attending saw was when Jax was in status. So this one d--n well be better than that one. But the resident and the tech were freaking out. They weren't able to pull up his last one to compare. Right now there is no plan, it will be officially read, and my ped will call me and tell me what it "officially" says since she's the one who ordered it.
Then what do we do? I have no idea, since his neuro plainly made it known already that he doesn't know what else to do for his siezures. He said he would see him but what good does that do to see a doctor that doesn't seem to care to much?

These siezures are going to be what takes his little life. It sounds bad I know, maybe not today or next year, but this will be what takes him. Thanks for the neglect that caused the brain injury that in turn caused these seizures. Your brain can't live seizing like this. And he could go back into status at any time. Then what do we do? I guess we enjoy every second we have him, and do everything we can, and make him as happy as possible.

I mean, what else do you do?


Not happy about those leads





Ok, all better


Nice EEG hair baby!

30 comments:

Junior said...

Lacey I am so sorry to hear that you are dealing with more difficult news. So hard when the docs just don't care. Wish you were closer and could get in to see Junior's neuro, he has given us hope again when the past neuro had taken it all away.
Lots of prayers coming your way.
Jax is so cute, love that last pic with his spikey hair.

Lily said...

Oh I hate reading this! Hang in there Jaxson and fight! Lily and I love you, love you, love you!!!

Groettum Family said...

Here's a (((hug))) from Minnesota. Wish I could do more. If you want I can try to see if there is someone who could do more at the Mayo Clinic? Hang in there, you have one tough little cookie!

p.s. he is totally freakin adorable!

Kim said...

How frustrating. Jaxson is in our family prayers every night. His spikey hair is so adorable.

Phoenix's Mom said...

I'm sorry to hear the latest. He's a fighter. You both hang in there and if you need us you know how to get in touch.
I must say I do love the hair.
Hugs
Angela

ANewKindOfPerfect said...

Lacey, I am so sorry. I hate seizures and I hate that poor Jaxson has to deal with them! I hope that someone can help you guys get relief.

Kristen's mom said...

So sorry to hear that you have more bad news. I know how exhausting this can be. What an amazing person you are.

Shari said...

Lacey: I am so sorry the news you keep getting is so negative. When docs don't care it makes me want to advocate harder, but gosh, what do you do? I will continue praying for Jaxson and his family. Much love to you.

Kim Rees said...

Said a prayer right now after reading your post. May the Lord give you the strength and peace that passes all understanding. Lean on him and he will comfort you. He knows your situation and he wants you to know that he loves you and things will get better if you put your trust in him. God Bless You and Jaxson! You remain in my prayers.

Ruby's Mom said...

I'm praying for Jaxson and will put him on our church prayer list tomorrow night at Wed. service.Hugs to you and sweet Jax.

Anonymous said...

Lacey,

I wish we lived closer so that I could just give you a HUG!Let me know if there is anything I can do for you. We will keep praying. Let me know if you need help researching other docs.

BIG HUGS!
Steph and Christopher

Anderson Family said...

Oh I am so sorry for the bad news - and the sick kids. You have a lot to deal with. We are praying, praying, praying that a doctor will help little Jaxson. He has been through so much - but he is a fighter. He is so, so, cute - and I love his EEG hair. We are here to help if you need anything!

Kristi

stephanie said...

Hi Lacey,to hear that your doctor doesn't care breaks my heart. I don't know if you read my post about about Em's doctor, but he is exceptional,and a genius.He's been around for a long time and I'm sure has seen it all. RI is a long way from you but maybe he could help.Maybe he could suggest someone closer to you, I don't know. It was just a thought that came to mind, and I've learned not to ignore that nagging little voice.Here is his name, Dr. Pueschel # 401-444-5685 and e-mail sigpueschel@aol.com It can't hurt, good luck.

The VW's said...

I am so sorry Lacey!!! Seizures are so horrible, especially when they could have been prevented!!! UGH! It makes me sick!

I pray that some doctor will be able to help you and Jaxson! There has to be something more that they can do! How much Keppra is Jax taking each day?

I'll be praying for you and Jaxson! It amazes me what Jax IS doing while on so many seizure meds and having so many seizures! He obviously is a HUGE fighter! Keep this in mind when all of this is bringing you down.

LOVE AND HUGS!!!!!

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

Jax we are praying for you and your hole family! I can't even Imagine how hard not knowing is for you all! Have you thought about finding another nuro? Perhaps a new doc could think of some new things to try.

ds.mama said...

Oh Lacey, hugs and prayers are coming your way.

Google Omega 3 oil and seizures and then ask your heart docs if Jax would be ok to take an Omega 3 supplement. We take the Nordic Naturals Children's DHA. Maybe it could help.

Michelle said...

Praying for you.

Hayden and Brent said...

Oh I am so sorry to hear the bad news! Our prayers are with you! Jaxson has the sweetest little face! I just want to squeeze him and kiss those cute cheeks!

JRS said...

Lacey,
I don't have adequate words for what you're going through. Just know I'm thinking of you all and sending prayers.
---Jen

sturpin said...

I love his hair!

I am sorry about the neuro and the feelings of hopelessness. I wish I could lift your spirits as you have so often lifted mine.

Praying here.........Shelly

Alyson said...

Awwww little Jaxson...... My heart aches for you.....You are such a fighter.....You shouldn't of had to fight your way through life.....You should be playing with your cars, trains, and blocks, causing trouble and getting into fights with your brothers, laughing at how silly your brothers are, making messes in mommy's kitchen, playing in the dirt, jumping in muddy puddles, splashing in the tub, giving mommy tons of hugs and kisses.....I know you are a dreamer and that's why you are such a fighter......

Jaxson you are truly amazing.....I think about your cute little face, your crazy cool hair, your cute little tongue,.....I love you Jax!!! You and your mom's friendship mean so much to me!!

<3 you guys!!

Hugs!!!!!

Tausha said...

I fight back tears as I read your post today. I am so sorry for what you are having to deal with and what Jaxson is having to endure, he is a fighter. My sister has seizures and they are no having to go to New York to see a specialist as their are not good neuro doctors in our State. You are in our prayers.

Tammy said...

You pray. You talk to us on your blog. And we pray for you guys.

I'm sorry the news was so harsh. Who is your neuro at PCMC?

Leaving you lots and lots of hugs.

Tammy and Parker

Emily said...

As I am holding back the tears, I have to say that I love his hair! I also feel so bad about your news. I wish there was a way I could help your sweet little boy. We'll keep praying...

Michelle said...

Oh he is so sweet! I hope one day I get to meet Jax!! So sorry about the seizures and not getting any answers! My older brother has had seizures his whole life...bad ones...I have so many memories of those moments. I am so sorry you all have to go through this! My love to you...always!

stephanie said...

You're absolutely right, you love him, you make him happy.. THEN YOU LIGHT A FIRE UNDER SOMEBODY'S ASS AND GET THAT BABY THE HELP THAT HE NEEDS! You know what to do sweetie, you're already doing it.. you always have been. But now is the time to turn up the heat, and when you encounter a doctor like his neuro doc you move on outta there. DO NOT waste your time on anyone who does not share your passion for Jax's life. Keep looking, keep fighting, be a b!tch if you have to. Whatever it takes.. you have it in you. If you didn't he wouldn't still be here.
Remember we're here for you.
Loving you always, Steph.

Melissa said...

HOLLY CRAP, WHAT THE HECK HAVE I BEEN..Lacey, I am SOOO SORRY!! This is soo sad!!! Lacey, now you know that Jax is going to make it through this;) I'll be praying for him & please know that I'm doing the same for you...UGH, I've been so wrapped up in my stuff w/Dillon...I'm soo sorry!!
{{MAJOR hugs}} XOXO

Melissa said...

Lacey, I am so sorry. Know that you are in my thoughts and prayers. My heart just broke reading this, I just want to hug him, he is so sweet. He is such a fighter! I just feel like I know him from your blog. Much love to your family and many, many hugs....

Michelle said...

I'm sorry for everything your whole family is going through, but especially that Jax is having seizures and you have a neuro that doesn't seem to care or want to figure out what to do next. How frustrating! Praying you can get some answers whether you go to Denver or Boston.

Becky said...

UGH! I'm SO sorry he's having such a hard fight. I haven't been on the blogs for awhile so I'm trying to catch up. I'll be praying for you guys. Let me know if you come to Boston....I'll come see you!!!