Tuesday, February 1, 2011

Brutally honest!

I started this blog mostly for a diary for me. For people to keep up to date on Jaxson. I met many great friends. People that have been down our road, and re-connected with the DS community. A lot of our new readers came here to follow our adoption journey, and Arina's new life here. This is a horribly long post about Jaxson, so bear with me!
I had a nice, long chat with my ped yesterday. She wanted to meet, go over Jax from head to toe, and make sure we were on the same page before the care conference. Especially because she heard that I felt that she was giving up on Jax as well.
Me and my ped have a great relationship. We've been to hell and back together, so we work well and are quite close. We got to the hard questions. She asked me if maybe seeing Arina was making me think more about Jax brain injury. Making me hate the hospital all over again. It was a great question, but I can honestly say no. We had our mourning period after Jax brain injury. It took me over a year to get back into the DS community. I felt like my child wasn't a DS kid anymore, he was a brain injury kid. I was tired of being asked why he couldn't even sit up yet. Starting this blog was when I really accepted what happened to Jax, and was ready to dive back into DS. If anything, having Arina home is more enjoyment. We get to do things with her that we couldn't with Jax, and its nice having that in our home again.

Basically it boiled down to his lungs being what I was most worried about. She told me she was worried about me going to one of these big hospitals, because they take out of state kids, run tests on them that have already been done, so they can charge for it. Its a huge money-maker for them. I understand her point, and I am putting that in the back of my brain.
But after I left, I thought of a bunch of stuff we didn't talk about, and I didn't feel like we were entirely on the same page yet. So I called her at 5:30, knowing she would be in her office doing paperwork. I asked her some more brutal questions. I asked her how long she thought he was going to live. I asked her this because I wanted a sense of how she was treating Jax. Treating him like a child, or treating him like a medical statistic. She said she didn't think he would live as long as he has. She said that if he keeps going on the track he's on, she would say 4 years, 5 at the most. Also remembering that a respiratory illness could take him at anytime. My next question was did she think I was over reacting about his lungs. She paused for a minute, and said yes, she did. Then I knew we weren't on the same page!
She said that 1/2 to 3/4 of a liter of oxygen wasn't that much, and that if he was higher she would think something was wrong. It hit me that she wasn't understanding me. I told her I'm not thinking about the last few months, I'm thinking the last couple of years. Its been a slow trend downhill with his lungs. I reminded her of how much oxygen he used to be on, what he's on now including the vent. She agreed, and she said, is this what you've been worried about this whole time?
EPIPHANY!!
She finally understood.
She was thinking I wanted to go out of state and have this huge surgery on Jax. A surgery that she couldn't get behind because she thought it wouldn't be good for him. We canceled the care conference, because we don't need it. I'm going to make an appointment with my pulmo, and have the same chat with her. We are still meeting with the palliative care team on Friday though. I would really like their input. They are doctors and nurses too, so they can tell me what they think about him medically.
More than likely I'm not going to go to CHOP. We thought it would be more productive to look for a doctor in California, since we hope to be there by summer, and I'll have to find a doc there for him anyway. I do strongly believe that I need a new person to look at his heart and lungs. Especially after talking to my cardio last night. He called after he heard that we canceled the care conference. I told him about the gradual decline of his lungs, and how we need to get to the bottom of it. I told him that I still believe that it is his mess of collateral veins in his chest causing back flow, not aspirating. My reason is because his gradual decline began when we found the clotted veins in his chest. We trached him, putting a band aid on the problem, but not fixing it. Then we started the vent. Another band aid, never really fixing the problem. Many doctors that I have talked to say that although collateral's are doing the job, they are usually tiny and scattered, therefore inefficient.
He agreed that it was possible!!!!
Ok, this is the guy that said that wasn't the problem to my pulmo, now he's telling me its possible!
Then he went on to say he thought his heart was ok. That he still has a VSD, causing problems with the left side of his heart. He has pulmonary hypertension, causing problems on the right side of his heart. But he thought that was ok for Jaxson. Do you know how I take that?? Its ok for Jaxson because he is a chronically ill child with a short life expectancy. This is why I'm not satisfied with anything this man says.
I understand what everyone is saying about a big surgery. The surgery to fix the vein problem would huge, bigger than open heart surgery. And a lot of doctors say that is too much for Jax. That we are thinking about ourselves and not him. I just want a diagnosis, when I get that, then I will decide what is too big for Jaxson. One day at a time here!
A lot of people say that you just know when its your childs time. That you feel peace. I'm not there yet, and I can only pray that when his time comes, that I feel that peace. I just don't feel like he's done living yet. He is doing so much more developmentally, he proves that he enjoys life, and so for now we are just going to search for the big lung problem, and pray that he doesn't get sick before then.
I'm getting whiplash from all the back and forth. Going here, not going here. Doing this,not doing this. But I guess thats how you problem solve. Think of all the possibilities, and then make a decision. All in all, by the end of the day, we made huge progress! I'm thankful for that.

A few pictures to end this novel. Arina's hair is getting so long that I was able to put it in two pigtails!

Lovin on her Jaxson!


24 comments:

Scrappy quilter said...

Look at those two precious children. It just my heart good to see how Ariana loves her brother. Just so sweet.

Praying you can find the answers you need. Hugs

Life in the Fast Lane said...

Oh Lacey, my heart aches for you. I have never been in your shoes, but I admire your strength and desire to do what is best for Jax. You were the one who told me to keep pressing the dr's if you really felt something was wrong, and I am glad you stick to it. My heart and prayers go out to you and your family!! Keep fighting, it will get you what you want and need, and if nothing else, it will give you a peace of mind knowing you did everything in your power for him. Keep you head up!!

Kristin said...

Love the piggy tails!
At least you got one doc seeing eye to eye. Good luck with the rest.

Rochelle said...

Yeah for the progress on Jax! And oh my goodness when I saw the pic of Arina it reminded me of Alayna's first piggie days and she had that same outfit too! CUTE!

Ruby's Mom said...

Sweet babies! I'm praying for the doctors to be able to help Jax.

The VW's said...

Love the pigtails! And, love the kisses for Jax! What cuties!!!

It's great that you are communicating with the docs! That is how progress is made! I wouldn't be able to give up either....keep fighting for Jax! He is so worth it! Hugs!

Corinne Judy Smith said...

What would your boys do without your strength, insight, and ninja capabilities? You are amazing! I haven't been posting, but I have been following. It's just hard to type and feed baby at the same time and that's usually the big chance I have to catch up on your blog. Good luck and loved all of your pictures!

Becca said...

Lacey, you are such an AMAZING mom!!! Your children are all so lucky to have you a million percent on their side. You know so much more, instinctively, than any of those doctors. I hope you can finally find doctors that will be looking out for JAX and can see him as a little boy. ((hugs))

Team Carter Jay said...

It's so true. I felt that peace with Carter when I KNEW that it was time. Keep on fighting until you feel that peace.

nicole said...

Jax's life is valuable and worth fighting for and I know I'm not telling you anything, but I want you to feel confirmed in your efforts for him.

Not a Perfect Mom said...

They are so sweet together...
and everytime I read all Jaxs med stuff I never know what to say...I would never want to come off like I know what I'm talking about and offend you...but know that I think of you often, and pray for sweet Jax...
And how would any mother be able to peacefully accept her childs time to go? shudder....

ParkerMama said...

Lacey,

Do you think (maybe) that it could be possible that cardio's comments could mean more that Jax is holding his own with the ASD and PH right now...and the issue is with the veins.

There are people who do okay with certain levels of PH.

I totally support you going to CHOP. I'm slowly working Reed into seeing the need of taking Parker to Denver or Cali.

Just a thought. xoxo

Tammy and Parker
www.prayingforparker.com

Mama Mason-Mann said...

Lacey, you are one amazing woman! I don't know how you do it all! I don't envy the decisions you have to make! Hugs to you and sweet Jaxson. And I love the pics, as always. :)

Kelly said...

Lacey, you are one AMAZING mommy!! Keep on pushing for those answers.....I am praying that they come soon!!

love Arina's piggies!! And I LOVE the pictures of Arina & Jax......precious!!

LibsMommy said...
This comment has been removed by the author.
Lovin Lane said...

Your pics are just precious as uaual... and I pray you find ALL the answers you are looking for... You Go MOMMA!!! They are lucky to have you....

Shelly Turpin said...

Sounds like people are finally thinking and listening to you. I'm glad for that.

Erin said...

Ha! Now you know we have the same cardio and I for the most part have had good experiences with him, but he SURE does love the saliva aspiration theory for EVERYTHING. Gave me a laugh. I know what you mean about not feeling you belong to the DS community sometimes. Like I have to glom on to the T-18 T-13 community. Bummer.

suelmayer said...

Lacey, your post made me think of a book I'm reading about the 9 steps to keep the doctor away. In the book they talk about how well meaning doctors continually treat symptoms instead of getting to the why something is happening and it isn't until the why is fixed that change can really occur. I struggle when a doctor tells me that something is okay or alright for Sam, like it was okay for him to have a mild hearing loss because his speech was limited. How were we going to help him speak if he couldn't hear. Keep pushing the doctors, keep trusting your gut, keep looking for answers. We are always praying for you!

Melissa M said...

I love the pigtails and especially the kisses!

I pray you can find the answers you need. It it so, so hard to try to make the best decisions for your kids! I truly hope you can get to the bottom of the lung issue.

Sasha said...

You are so strong. I don't know how you do all that you do. Well I know your love Jaxson..so that is how you do it. I don't know, I guess you keep fighting until you think you have done the very best that you can do and maybe then you get some peace in knowing that you have done everything
in your power to help him. Doesn't make it any easier though, I am sure. Hang in there. Hugs. Ps. Love the pics.

Anonymous said...

Lacey, you are so strong for Jaxson! Don't let the doctors feel like you are second guessing them or not trusting them. Just keep asking questions and doing what you think is best. Pulmonary Hypertension is simply not well understood and doctors certainly do not have any good methods for treating it...except viagra. I have been in your shoes except my hell only lasted 7 months. All I can say is just keep fighting the good fight, you've got lots of friends and strangers praying for you :)dawn.mann@hotmail.com

Summer said...

Lacey.......You are an absolutely amazing Mother ! Your Children are BEAUTIFUL inside and out!!!! I've cried through just your first page on your blog. I'm not sue if you read my posts from last Sept of 2009 forward.....but I think I was the ONLY one holding on to hope for my Mason!! I didn't get any hope from PCMC's cardiac transplant's team :( And not only did CHOP and Stanford give me hope, but confidence also! They ARE NOT going tell you they can take on Jax just for the money!! I promise!!! They will not take on a case they do not feel good and confident about!! I chose Stanford after many prayers and..... it was much closer to my family in Utah. Please if you want to talk to me , e-mail at sumstrick@gmail.com and I'll give you my cell number.

Pam said...

Girl...I am feeling your pain. I am getting whiplash from this same cardio. UGH!!!! I think he is way over worked and doesn't even look at things correctly anymore.

He told me back in Oct, that Rhett's valve needs to be replaced. Now he's saying that Rhett can deal with it, and not to worry about it. But his heart rate is low, so maybe he needs a pacemaker.

But I can guarantee that we will get the holter results back and he will tell us Rhett's fine. Well He's NOT fine. He sleeps all day, he's dusky, and he has stopped eating! I just want to punch him. He keeps tying to blame it on other things other than Rhett's heart, and we have had a FULL workup done on everything. The only thing it comes down to is his heart.

So. Anyways. I just wish you could get some answers, and people would look at Jax as a child. Sending you lots of hugs.