Monday, September 14, 2009

The plan for Jaxson...kind of

I'm going to try and explain what we are doing with Jax. I want to explain it all, and go in order, so bear with me. I don't have full details yet, I was expecting a couple of doctors to call today and they haven't yet. But I thought I better clue everyone in because people keep asking.
You know he had the MRI and it didn't show anything we didn't already know. You also know that for some reason our cardiologist now thinks he may be able to balloon open the SVC. I sat down with my ped on Friday and we had a long talk.
There are some main questions. What is causing his increasing respitory distress that is in turn causing his pulmonary pressures to be up? His cardiologist doesn't think its the SVC. But we think its secondary to the SVC. We think that the extreme puffiness in his cheeks and neck are causing his airway to be more closed off. Of course that would explain the respitory distress.
Our cardiologist definitely wants to take him to surgery to measure pulmonary pressures and look at his pulmonary arteries to see if they are narrow. And get a general look at his valves and remaining VSD. He then wants to measure the pressure above and below the SVC. If the pressure above the SVC is more than 2 or 3 millimeters higher than the pressure below, he will try to balloon it open. So we won't know if he is going to balloon until the middle of the whole procedure. If the pressure is not higher, then its not the SVC thats causing the puffiness. He has other major veins in his upper body that are blocked, that could be causing harm as well. Plus, there are some major risks if we decide to try and balloon it. I've said those before too. A clot could break loose and travel to his heart or lungs. If the SVC is not the culprit,we can then decide if we want to go to Boston and have them look at those other veins as well.
My ped has gotten a team of his cardiologist, pulmonologist, and ENT. They want ENT to bronch him while he's under and look at his airway to see if its more narrow than usual. I'm praying they don't want to trach him if its narrow, but if its causing respitory distress and high pressures, than we have no choice.
I'm waiting for cardiology to call me so I can ask some more questions. I think they are going to have to go in through his groins and also his upper body to get the pressures below and above. This is probably going to be a long surgery. I called today to schedule, and the earliest they had was Oct. 22. We scheduled it but I'm going to talk to his cardiologist about moving him up. I know he wants to start meds that he has to start while he's in surgery, and I don't want his respitory status to worsen over that much time. I'll let you know when it gets scheduled.
We are also going to try bi-pap instead of c-pap since he was desatting. We are hoping this will help. I remember when he was in the hospital he was always intubated from c-pap. Only bi-pap he was able to come off of. Pray it works, I don't know what we'll do if it doesn't. I had to turn him up to 2 liters Saturday night to keep his sats above 90.
So there you go. I hope you understand it all, I'm still trying to myself.
Jax with his monitor that nowdays is permanently attached to him. You know he never keeps his O's in his nose, and his sats plummet when he pulls them out.
The boy and his puffy face.

23 comments:

Kristin said...

Praying you get an appt sooner than a month out. Why are they always so booked?!. We've had the same problem from appt #1. If they are that busy, hire some more doctors!!! I don't get it.

Regardless, Jax is a adorable, puffy or not :)

Dotty said...

praying for you and super cute jaxson! what a fighter you have there. dont give up, keep on and on until you know and feel comfortable with everything, Jaxon is so blessed to have you as his advocate, his voice, and most of all his mom! God Bless
zach's mom
Dotty

Stephanie said...

Oh sweetheart, I totally understand how scared you are.
Please know that I am here for you in any way I can help.
Do let us know as soon as you get more information and remember we are praying for Jax to come through this like the fighter he is.
Love always, Steph.

stephanie said...

Gosh lacey that is so much medical terminology for one little boy. You sound like a doctor. Probably could be one by now, lord knows your more than qualified. Thank God Jax has you. praying for you all!

Junior said...

Keeping you guys in our prayers. Hope they can get the appt. moved up.

Emily said...

A month away... that just seems too far out. That is a lot to understand and take in. I love Jax with or with out his cute puffy face!!

Alison said...

Wow - that sounds like a lot to take in. I will pray that the surgery can be done sooner - I hope the bi-pap works too. He is such a gorgeous boy.

Dawn said...

praying they get mr Jax in sooner.

Mama Mason-Mann said...

Lots of thoughts and prayers for you and Jax and your family. My heart beats a couple extra times for you guys! Wish we were closer or could somehow help more then just thoughts and prayers. I so look forward to meeting some day! You guys are ALWAYS in my thoughts.

The VW's said...

What a sweet little man! I just love looking at his adorable face and wide eyes! He is perfect!

Sounds like a good plan for Jax! I hope that they can get him in sooner and I pray that the surgery goes well! At least you have a plan and are finally on track to get Jax better again! I'll be praying! HUGS!

Denise said...

Let me start by saying that Jax looks so sweet in those pictures!! I think I kind of understand what you are saying but of course I have no hear experience so it really is only what I have learned through you and others. I REALLY hope that something will work and I hope that it is the easiest path that will work. We will all be praying hard!! I hope you are doing okay yourself.

Jeana said...

We'll pray that they get him in sooner and that they can find out the best way to help your little guy.If there is anything we can do let us know, we're close by.

Michelle said...

My goodness, will they ever figure it all out!? I certainly pray that they will! That poor little boy as well as your whole family has been through enough my friend! Praying they can move up the surgery date too...that is actually the day we see our cardiologist...the earliest she could see us...maddness! Love you my friend! We need to plan our CPK evening with the Quicks! :) Iam here if you need me!

Anderson Family said...

Wow - that is a lot of information. I hope Jaxson can get in sooner than October 22 - that does sound far away. I hope that they can find what is making him have so many respiratory issues. They did the bronch on Carter when he was in for surgery and found that cyst - our ENT said that if he airway was narrowed they could actually dilate it out while they were in there.

We were by a cute little girl in PICU that was on Bi-Pap - that didn't look any worse than C-Pap.
Praying for guys - let us know if we can help in any way!

Lauriann said...

Wow Lacey that is alot to take in ....
Hope Jaxson can get in sooner ....
many thoughts and prayers are with you ....

MichelleH said...

Lots of new information, but it sounds like they are finally getting a handle on things. So overwhelming and terrifying, but also necessary to get to the bottom of things. Each picture of Jax warms my heart....what a beautiful little miracle you have. Give me a call or send me an e-mail if you need to talk.

Love and hugs,
Michelle

Kim said...

Praying for that sweet boy. That is an amazing amount of information you have to take in and understand. You are an awesome mommy!

Cammie Heflin said...

I so hope you get in earlier! Precious boy, even puffy he is adorable!

Heather said...

Miss talking to you.I'll try and call tomorrow.As for Jax ... I love that boy so much and hope and pray that they can get him in a bit sooner.So much information and emotions to process but I have all the confidence in you and in Jax and you both,all of you, will find your way.I know you will.

sturpin said...

wow - it's all so much, but it's a plan. I so hope there are answers at the end of it all. Oh Lacey - you, Jax, and your family continue in my prayers.

Melissa said...

WOW Lacey, Thank God you're able to understand all of this terminology. I completely agree with you, Oct 22 is a little too far. Poor Jax's face is getting soo puffy...UGH, praying & praying that he get's better soo fast!

You know, I was talking to Mo about Boston. It has been rated the #1 hospital in the US!!! Just saying...Whatever happens, my prayer is that Jaxson will get the BEST CARE that he deserves & will feel better soon.
Hope all is well with you Momma!
{{HUGS}}

Michelle said...

Whew! I don't know how you keep track of all that is going on with Jax medically...I know you do it cause you need to stay on top of everything, but geesh you've got to be a dr yourself!

Praying this plan gives and his doctors some much needed answers to what is going on!

Abby Olsen said...

Please email me at abby32979@yahoo.com my son will qas going through the same he is 8mo now