Wednesday, January 26, 2011

What do you do?

What do you do when your medical team has given up on your child?

You find another medical team, because you are his biggest advocate!

I talked to my ped today. She is preparing a care conference, with pulmo, cardio, her, us, and the palliative care team. I think that is a great idea, because from what she told me today, they have given up on my baby. Pulmo said she can't do anything more for him. That this is a part of his brain injury, and it will continue on its course until it takes his little life. My ped says that we can go out of state, but what are we going to do if they tell us its his blocked veins? We can't fix that either.
So I want this care conference so I can find out if our doctors are on Jaxson's side or not!

CHOP, here we come! Although I also found out that it may not be covered under our insurance, because its a second opinion, and not something that's not offered here. I'm not sure what we'll do then, because he needs this, and you know if its not covered, its going to be thousands of dollars.

*sigh*

Seriously, does anyone else have doctors telling you to let your child go?

33 comments:

Sweet Pea's Mommy said...

Oh Lacey! I wish I had the power to make this all disappear! Jax doesn't deserve any of this and neither do you! Stay strong and I will pray that this goes better than it seems it will!

ParkerMama said...

Wait. You have doctors actually telling you to let your child go?

I thought Pulmo was on board for CHOP.

I thought the vein thing was present from birth....so how does it now factor in as part of his brain injury?

I know. So many questions. I'm just trying to make sure I understand and can support your and that amazing little one of yours.

I don't know what to tell you about your insurance. Are there programs via CHOP that might kick in a little?

Know that I am thinking of you and praying for your family.

Tammy and Parker
www.prayingforparker.com

Michelle and Sean said...

I'm sorry Lacey!!

Yes we do have doctors telling us this. We are actually heading to Houston for treatment as soon as Maggie is more stable with this RSV. We have talked to them and they think they may be able to help her more. The doctor in Atlanta isn't sure what else to do either. But he is mainly a doctor that just diagnosis people so this other doc is one that treats people with mito.

It sucks to be in these positions. I hope you are able to get some things straightened out in your care conference. Prayers!

LibsMommy said...

I am really sorry Lacey. I know it hurts when they join palliative care. Libby was on it since 9 months old. It didn't mean she was going to pass away, it just meant she had a terminal illness (heart defects) and that when we got to that path we would have support behind us to get us through. The palliative care team was the best thing to happen to us. I pray that your team will be just as good. I know what it is like when there is no hope, but you have to keep hope and faith down until he last second!! Never give up, but also do what you feel is right for Jax, if you think a surgery would be worse on his body, then just listen to your own heart. My motto is quality before quantity and nobody should judge you. Keeping you all in my prayers.

Shari said...

That absolutely breaks my heart! I can't even imagine the feeling that brings. I am praying that CHOP can help him.

Kathryn said...

So sorry to hear this. I know you have fought so hard for your sweet boy. Hold your boy close- Keep fighting and we will keep praying!!!

Scrappy quilter said...

Oh Lacey, I would get a second opinion too. Years ago a specialist told us to never save for C's education, she would amount to nothing. I walked out of there and never returned. It appauls me that doctors do this. Your little man is as important as any other patient. My heart goes out to you. I hope you can get the answers you need when you have your meeting. Hugs

Holly W said...

Oh Lacey...I have no words of wisdom or help to offer you...but I want you to know that I'm thinking and praying for Jax and the rest of your family to figure this out and come up with the answers and finances for your little boy!!

Anonymous said...

Prayers for Jax and you and the rest of your family...such a heart-rending thing to be told. I'm glad you're going to CHOP and are such a brave, loving, strong advocate for your children.

Hugs...

Susan in Ky

The VW's said...

If they aren't on your side, then you go elsewhere and you raise money to do so! There are a lot of people that love Jax...and all of your family! And, I'm sure many would donate to get Jax help! I know that I would!

Also, if the team there isn't willing to do anything else, then it sounds like you have no choice but to go somewhere else, so hopefully insurance WILL cover it!

I'll be thinking of you and PRAYING! Hugs!!

The VW's said...

Also, why do they think it's secondary to his brain damage? He has been making progress in many ways lately, so it can't be just related to that! Crazy! I think they are giving up...and no doctor should ever do that! It's their job to do all that they can for a patient...ALL PATIENTS!

Anonymous said...

Lacey - Can you get all Jaxson's records to CHOP so they can assess all of it before you even make plans to head out here? I would think they would want that before hand anyway. I would not be giving up on Jax - look at what he has shown the doctors in the past!! They may be telling you that there is nothing more that THEY can do, but that doesn't mean there are not other docs out there who can!! I say you have to try. Also, I know that if you talk to the hospital insurance dept ahead of time and explain the situation with insurance they may be able to talk with your insurance co. LOTS OF PRAYERS BEING SAID FOR YOUR LITTLE GUY!

Amy said...

Oh my Lacey this makes me mad. Praying for you guys. Wow I am in shock.I don't have alot to send but I will send what I can to help with CHOP. Never ever give up. We brought in Pallative care when Gabriel was so bad and they helped us sort through things and they didn't push. There agenda was us and Gabe - nothing else. You go Mama Bear protect your cub.

Kristin said...

Oh Lacey. I'm so sorry! There is no reason to give up in sweet little Jax.

Becky said...

Praying for you guys. I never gave up on Ben...when others did. Neither should you! Your all he's got!

Tia's Photography said...

We did we had the drs tell us since her was born that they did not know what to do for him, but yet they wanted to keep him in the hospital. then when he started getting really sick they made us sign a DNR for him. Im so very sorry to hear that they are giving you such a hard time trying to get good care for him.

Junior said...

Oh Lacey, we are praying hard for you and your little fighter. Jax deserves the best of everything.

We had a neuro tell us once that there was nothing left to do, to take my child home and make him comfortable.

Jessica said...

one thing is for sure, You are the best mommy warrior ever! ANd I know that you will fight till there is no more fight to do so. If you need to talk call, if you need a hug call, I am always here for you and Jaxson.

Jeana said...

That just breaks my heart, Jaxon deserves everything any other child does. He is such an amazing little guy and it just tears me up that doctors don't see that.

Anonymous said...

Prayers for you and your beautiful boy! I don't know you but I think he is the luckiest guy ever to have you as a mom.

Anonymous said...

I'm so sorry to hear about Jaxson. I will pray for him and your family for sure. Keep fighting for the best care possible for him. I know you know this, but you and you alone know him better than any other doctor ever will. You are his mother and have earned the right to call the shots.

I know you've probably had millions of insurance issues before so maybe this is something you already know about but I would advise you definitely to learn your insurance policy's appeal process.

Also, have you applied for Social Security Disability/ Medicare for Jaxson? Maybe your family makes too much money but maybe not... you'd be surprised with a family your size the income limit really jumps up and the deductible expenses that don't count towards your income and assets is pretty high (such as your homestead and car don't count.) It would be worth a shot and the medical care available would be more extensive then.

I'm sure people come from far and wide to CHOP so they might have some good ideas for insurance woes too.

Thinking of you guys

Melissa

Melissa M said...

I hate that no one can find answers for Jax, or won't look for them. That's the drs job, and I'm so sorry that they are failing Jax. I pray for answers for you all soon!

suelmayer said...

Lacey, my heart hurts just reading this. It's not right and it's not fair. How can they just decide to give up? I hope the care meeting brings some answers. As for insurance I only have a hate relationship with our insurance company and I'm pretty sure it's mutual. Saying prayers and sending hugs your way!!

Vanessa said...

Lacey, I'm so sorry that the doctors have basically giving up on Jax and that they're telling you and Ray to do the same thing. I can't even imagine what you're going through, but know this... I may not know you guys personally, but please know that I'm here for you and your family.

I originally subscribed to your blog to get my Arina fix in between Ray's facebook photo posts, but in reading every backdated blog entry, I feel that I have gotten to know you as a mom and have gotten to know your family. I wish you all the best and I hope that things turn out for the better for Jax. Please let me know if you need anything.

Tina said...

As a parent can we ever give up, no matter what doctors or anyone says. This is so hard and I can't imagine being told that there's nothing one can do for ones child. No doctor should feel that there's nothing more that can be done, isn't it a challenge for them as well to be able to help Jax? I know you will keep on till you get answers and solutions. Jax is in the best hands having you as his mom.

Praying for your sweet adorable little boy and knowing God will keep him safe. I love those baby pictures in your last post, so so adorable

Simply, Sarah said...

I'm sorry and wish things were different. I wish Jax never had his brain injury, or any of his medical ailments. This whole illness aspect stinks, and that's such an understatement kind of word. We'll add Jax and your family to our prayers.

Vivielle said...

I'm so sorry to hear that his doctors might be giving up on him. I will pray for you all. You have a beautiful family.

Colleen said...

It's frustrating to me that so many Dr.s just throw their hands up so soon. I think it's worth it to get a 2nd opinion and find Dr's who are on your team. I've had a few Dr's who seemed to give up on Isaac's development and now he's doing so much better...so you never know!

Runningmama said...

How hard this must be that no one seems to have the answers. My hope is that with everyone in the same room, brain power will take over and a plan will be hatched that will benefit little Jax. I can't believe the second opinion won't be covered, I mean if someone is telling you they can't do anything else for you it seems only natural and reasonable to try and find someone that can! Keep us in the loop on the payment situation because there are those of us in the DS blog community that would be willing to help, don't do it alone, please!

Chromosomally Enhanced said...

I am not sure what to say...but keep fighting and we are hear to listen and send good vibes...do not give up...he is Jax! smiles

heather said...

I just wanted to let you know that I am sorry you are going through this. I hope you get some answers soon. I can only imagine how terribly frustrating this is for you!

ABandCsMom said...

After Carly was diagnosed with her severe heart defect (age of 3wks), we asked for a mtg with our cardio team and surgeon. They did not sugar coat one single thing. They told us that Carly's chance to survive was only about 10%. We were told that without a successful surgery, she would die within a few months. We were also told, that if the surgeon didn't have enough of Carly's tissue to work with, (build her mitral valve)that he would have to "take the repair down", in which case, we would have lost her within days. It was a very tough decision to make, knowing that the odds were very much against her surviving surgery, BUT...we told the surgeon and the cardio team, and I quote, "we love her, and we HAVE to try. She deserves no less" And so surgery was scheduled. All went well, until 13hrs later when she coded. But, as you know she pulled through that. Had we not told the doc to do the surgery, we would have lost her in infancy. And by the way, the ped's cardiac staff and the ped's cardio surgeons were less than 50% in agreement for doing Carly's surgery. Apparently, they all do a vote (with a very critical care patient)and normally, the majority wins out. Well,,,,not that time. MOM and DAD won out!
We as parents HAVE to try everything for our kids. Sometimes, our thoughts fall upon deaf ears.

I wish you the best of luck as you fight for your little guys life.

DevonLeah said...

((((Lacey))))