Saturday, September 26, 2009

Whats new on the Jaxson front

Jaxson is doing good. They extubated him last night to bi pap. They took him off the bi pap this morning and his been fine. We came back up to the floor today, and we'll stay here until a care conference Monday, and probably a trach next week. The care conference is about whether or not to trach him, but ENT is already saying thats what needs to be done. So I'm pretty sure thats where we are headed.
We continue to have problems with our cardiologists like we always do. They didn't do what I thought they were going to in the cath. I thought he was going to measure his pressures and start some meds. But when I asked him what his pressures were he said that when he measured them they were lower because they had already started nitric. So we didn't even get a number on his pressures are going in. My cardiologist is now saying he thinks the swelling in his face is because he is on the ketogenic diet, which is an all fat diet.

Again, OMG

He is just pulling things out of his a$# to try to explain things. You would not believe how frustrating this place is to me. The only reason I still come here is because its all we have here. The only pediatric cardiologists in the whole state. We are now looking into doctors in California, since we want to be there anyway.
I mean, he's been on this diet for two years, the swelling came on in a matter of days, and only in his face and chest. His legs are as skinny as they were before. Plus its not like just eating junk food all day, it puts your body into ketosis, so you burn fat instead of sugar. Its not a fattening diet.
Anyway, I didn't see ENT today. But I guess he talked to the cardiologist and still thinks the trach is the best thing. I really hope this care conference is productive. I hate when I have to get pissy with people.
Daddy and brothers went to the buddy walk today. He couldn't believe how many people asked about Jax. People that he didn't even know, how crazy. I will post pics when I can.


Alaina and Kyle said...

What a strong little man. I sure hope your care conference goes well and you are pleased with the results. Don't you wish they would listen sometimes...Doctors can be frustrating!! Glad some of you made it to the Buddy Walk for Jaxson...he sure has a lot of fans out here!!

ParkerMama said...

For the first time ever I was disappointed with our cardiologist.

He had Parker sedated differently than he usually did. Then when he showed up being very acidic and the anesthesiologist wanted to change out Parker's trach for a cuffed trach because this trach was leaking so much, Day said not to because he wanted to see the worse case scenerio.

Now Day says that his blood being so acidic could have shut down his veins messing up the results.

He wants to add a statin to Parker's meds and then do another cath this time sedating him the same way he had his first two caths instead of this new way with anesthesia.

A friend of mine recommended a PH expert in Boston. I'm going to talk to Day about doing a virtual consult with Parker.

NO leaking valves.
His heart pumping great and looking strong.
His BNP great.
His EKG showing improvement two times in a row. And NOTHING is any better.

As a matter of fact the actual values were the same as the last time we cathed.

EXCEPT for the acid levels. They were WAY higher this time. And he's been diagnosed with medibolic acidity before. Due to the tube feeds. Which we just upped.

It wasn't a good time.

Just so you know. At first Day wasn't on board with Parker's trach either. It took him a minute and then he was.

Mama Mason-Mann said...

Oh Lacey, I'm so relieved he's doing okay! I've been checking and checking and was worried. I'm so glad he's doing as well as he is. how are YOU doing? RUnning on adrenaline, probably. Thinking of you and your family. Glad the rest of the gang got to do the buddy walk!!!!

Baylee and Blair's page said...

It's funny that you say you are going to switch Cardiologists... I'm having the same discussion with Britt about our's in Little Rock. They pretty much suck and we need to go elsewhere!

Hugs - Tiff

JRS said...

Thanks for the update. Hang in there.

Hope said...

I know I don't comment often, but I read your blog faithfully. I'm sorry you're dealing with frustrating doctors who are not on the same page. You know that little boy better than anyone, so trust yourself and your instincts.

As far as his airway, I can't offer much since Ava has always walked a fine line as far as whether or not to trach her.

I'm praying for your little man. When he's out of the hospital and things have settled down, I'd like to donate some fabric for more blankets. You are so sweet to make them for these amazing kids.

Emily said...

We were rooting for Jaxson's team at the Buddy walk! Carter wore his picture proudly on his shirt... so cute! I hope he continues to stay strong. So sorry you are frustrated. I hope things get resolved.

Unknown said...

How frustrating for you. Praying for a restful night for you and Jax.

Kristin said...

So sorry you're dealing with all this crap. We talked to Ray & cheered on Team Jaxson today - Piper was excited to see the "turtle boys". She still talks about your turtles.

Unknown said...

So glad he came through ok...he is a true warrior! So sorry for the never-ending questions and issues. I am frusterated for you! :) Not sure if you called back today my phone died. We can catch up tomorrow or Monday. Good to hear your voice and the strength it carries! Hang in and I am ALWAYS here if you need to yell, laugh, cry, vent, scream, cuss, etc! :) Love you guys!

Kristin said...

P.S. I took a picture of Team Jaxson with Ray's camera and never got one with mine. I need to steal a picture when you get them posted :)

Trina and Jophie said...

OMGosh...You are freaking kidding me? Keto diet my butt....

You don't have to be a genius to see that change. My sons nurse walked in when I was checking on him the first day he was in the hospital and the first thing she said was "is he on steroids?"

After she looked a bit longer she could obviously see it in his neck as well and again you don't have to know anything to see the rest of his body is developing normal size..


I sure hope you can round up someone with a brain....

Praying the meeting is productive and for wisdom to make the right decisions...

Trina and Jophie

Tina said...

Just glad to hear that Jax is doing ok right now, . But I feel your frustration and desperation to get some answers and that too the right ones, doctors can be the most frustrating lot to deal with and sometimes one wonders if they even care. Hang in there and listen to your inner voice always. Praying for Jax and for good news, which WILL happens don't worry.

Heather said...

Thinking of you today.Thinking of Jax,so good to talk to you yesterday.Wishing the distance was closer.I'll make those calls first thing Monday.Love to you all and kiss that fighter for me.

Alison said...

I'm so glad to hear Jaxson is doing well. I will be thinking of you for Monday's care conference.

Melissa said...

LACEY honey, I'm so sorry for these jerks giving you the run around & OMG, I'm so feeling your frustrations!!! Poor Jax!!

BOSTON was rated #1, you should really give it a try;)


Anonymous said...

Dear Lacey, Jaxson and family,

You will know me as "Megan's Mom" and I wanted to thank you very sincerely for your kind birthday wishes which you left on Keaton's blog. It means so much to me that despite your own daily challenges, you made the time to leave the meassage. I am truly humbled by the greatness of your character.

Know always, Lacey that we keep you and courageous Jaxson in our prayers daily. Keep your faith strong and continue to trust your own "mother instinct".

I think you are an amazing family, serving to inspire others in numerous ways. May God enfold you all in His arms and give you strength, courage, faith, hope, love, peace, acceptance, understanding and wisdom.

Kind regards

Bev Bourne

Mother of Megan and Samm
Grandmother of Keaton and Deqlan

Junior said...

So happy Jax is doing good and already off bipap. Way to go little champ.
Prayers that the docs will listen, some can be so horrible.
Junior sees a cardiologist just once a year but he is awesome(we are in CA).

ANewKindOfPerfect said...

What a stud Jaxson is, already off the bi-pap! :) I am so sorry that the cardiologist is being a jerk. I hate when they don't listen to us Moms. It is beyond frustrating.

We are being admitted first thing tomorrow morning. I don't know how often I'll get to check online, so I will be thinking of you if not reading.

Again, I wish you were here at CHOC so we could meet in the halls to hug and chat!!

Shelly Turpin said...

I am glad he extubated - that's great! Cardiologists are not my favorite people either. I hope the conference is productive.

The VW's said...

I'm glad to hear that he is extubated! Sorry about the other crap that you are having to deal with! I'll be praying! Hugs!!!

Unknown said...

So glad to hear he is doing pretty well. I am amazed at what our little people can make it through. We as adults probably wouldn't do half of it before saying we were done and these little guys take it all with stride. We will keep praying for Jax that his recovery keeps moving forward. We will also pray that if there is any other options before a trach that those might be tried. Lastly, we will continue to pray for you. We feel your frustration when it comes to doctors. Our most frustrating times have been when Isabelle was in the hospital, but overall you wish you could just give them a reality check slap and ask them to treat our children how they would want some doctor to treat their own. Hang in there.

Team Carter Jay said...

What a strong little guy! I'm wondering if we have the same Cardiologist lol! I'll be praying like crazy for Jaxson.

Michelle said...

I"m so sorry they didn't get the numbers they needed/were supposed to get :( and for the frustrations you're having in dealing w/this cardiologist!