Thursday, September 3, 2009

Echo results

We had our echo today. Didn't take the camera, forgot, like I'm forgeting a lot these days.
I'll just say I think I'm more confused today than I've ever been. Our cardiologist came down to talk to us about the echo. Even though my ped ordered it, she' s out of town until next Wednsday, and I'm not waiting until then.
His pulmonary pressures are double what they were in March, and his valves are both leaking more, that would explain the heart failure. But my cardiologist thinks some of the puffiness may be from this and not the SVC. I don't think so, just because the puffiness started back in March when we found the SVC, and his pressures were lower then. He is deciding whether or not he wants to take him to the cath lab here, before we go to Boston. He can get an accurate reading of his pressures, and I guess the med they like to start them on for PH (calcium-channel blockers, like amlodipine) can sometimes make them worse, so they like to try it in the cath lab before starting it. But he is going to talk to our case manager and see if our insurance will pay for viagra first. The other med is cheaper so sometimes insurance won't pay for viagra unless you've tried the channel blockers first. So if we can get the viagra then we will start that and not do the cath for now.
Also he is going to call the cardiologist in Boston because he's not sure the cardiologist there has been contacted about Jax. A cardiologist needs to do the SVC work, not just an interventional radiologist. I feel like I'm back at square one with Boston. And my brain is spinning about what needs to be done with Jax right now.
I will be gone for the weekend without internet. I think that may be good. I use this as my vent as most of you know a little what I'm going through, or just have great ears to listen to me and I can get out my frustrations. But I've hit a brick wall, and I'm flat on my face right now. In the 3 years I've had Jax I have just now finally hit my breaking point. I think thats pretty good, three years is a long time and a lot of crap has happened in that three years. I woke up yesterday with major sinus stuffiness. So that knocked me further down. I literally don't have the energy to walk up or down the stairs. I got into my doctor, but not until the end of September, at least I made the appointment. Huge step for me. I'm trying. I just want my energy back, it makes me crazy to be so weak, because I know I have so much to do.
We are going to Park City for the weekend. I'm hoping this will help. No homework, no appointments. We will be playing with Michelle and Preslie all weekend and enjoying the mountains. I just hope I have the energy to play.
Again thank you all for your prayers and your listening ears.

29 comments:

Dotty said...

hun i dont know how you do it, you are amazing and jaxson is so blessed to have you fighting for him! he is such a sweetheart and i really hope you can get the answers you need ASAP and get the treatments started. i hope you can get the viagra, thats what zach is on and i think its been a blessing! ill be praying for you!!

Mommy to those Special Ks said...

Continuing to pray Lacey! I hope they get this all figured out SOON!

Shari said...

I continue to pray! I wish there was more I could do! ((hugs))

Kristin said...

Thanks for coming to see Max today. That really meant a lot to us. I thought Jax looked great. He is so dang cute. Eating his oxygen tubes the whole time - he's still fightin'! Have fun in Park City!!

Tina said...

Feeling so helpless just reading about everything you are having to go through, not to mention little Jax, my heart goes out to you. I pray hard that you get Jax on the right treatment as soon as possible, it must be so hard just sitting and watching and waiting for answers. Continuing to pray for dear sweet little Jax and for good news soon!

Heather said...

Oh my sweet friend.You are tired.Mentally and physically.You have managed merely in survival mode and you have done it beautifully.You need rest.You need to get tot he doctors and you NEED your baby fixed.Everyday I pray for something to give for Jax.A corner turned and a break for a little guy who so deserves one.I'll offer up our cardiologist again now that you know a bit more.Might be worth a trip.Closer then Boston and # 3 in the country.Think about it.I'll call tomorrow if you want me to.Till then,enjoy the weekend and kiss Michelle and Preslie for me.

Conrad, Megan and Our Precious Keaton said...

As always you all remain in my prayers! Wish I could give you a great big hug all the way from sunny south africa! Keep going my friend, God will carry you! Jax is blessed to have a mother like you, you are truly inspirational! Enjoy the time away to recharge your batteries! God bless! Megan and Keaton

Pam said...

Praying for you Lacey. I have been having the same issues, and ya. Mine just haven't been about Rhett. Andy and I have been really struggling and it's a long story, but I think things are better now.

I just want you to know that I feel your pain, and I wish these Dr's would get off of their asses and take care of Jax.

Rhett's on viagra. Amalodipine didn't work for him. He's my little stud muffin. :D

Anyways, that brick wall? It will get better I promise. I feel more like I've hit a big thorny hedge right now, and in my world that's a step up from the brick wall. At least you know that you could possibly get through that hedge someday.

Just want you to know that I am thinking of you lots and sending lots of hugs.

I wish we could have come to your party that you had last month, but Rhett had RSV. I figured that's the LAST thing you needed.

Love you guys.

Michelle said...

Oh my dear Lacey...I have been hoping you'd post tonight so I would know what was going on and not have to wait til I see you! Prayers always, help always, friendship always...we'll all get there together my friend, to some peace, some answers for Jax and health for everyone! Talk to you soon my dear friend!

The VW's said...

I pray that you are able to have a fun and relaxing weekend! If anyone deserves it, you do! I'm surprised that you haven't broke down before this actually! You have had some VERY STRESSFUL years! Sometimes we are brought to our breaking point, just so we give all of our stress over to someone els.....family, friends, and most importantly, God. I pray that you will be able to find some help during this very difficult time! I'll be praying for you and thinking of you often!

I'm actually surprised that Jax hasn't been on Viagra through all of this! I was told that insurances will usually pay for it, but only if it's ordered by it's other name, which totally escapes me at this time. Then they think it's being used for a good reason. I hope that this works for him!

Hang in there Lacey and try to take care of yourself! I SO WISH that I was closer to help you and your family out! HUGS!!!

Denise said...

Oh, Lacey, I wish I knew what to say to you. I don't!!! I just know that somehow you will keep plugging along. And somehow things will work themselves out. I wish so much that there was something I could do to help you. Right now my heart is just heavy for you.....not much of a pep talk, huh??? I am so happy (and jealous) that you will be spending time with Michelle and Miss Preslie this weekend. You will have a ball I am sure.

Anderson Family said...

Oh Lacey - I was hoping you would have more answers than questions today. See that whole Pulmonary Hypertension is so confusing - at least I believe so. Maybe now you will get medicine for PH and maybe that will help Jaxson. I wish today would have gone better.....

Have fun partying in Park City with Michelle and Miss Preslie. I am sure it will be a fun filled weekend. We will continue to keep sweet Jaxson in our prayers and you as well. Please, please, please let us know what we can do to help - you are a great friend and we would be happy to help in any way.

Loves and hugs to both of you!
Kristi and Carter

Alison said...

You are all in my thoughts and prayers. I hope the weekend away helps you to feel a little better.

stephanie said...

Ypu've gotten this far..you can do it! I know you're tired, how you would just like to rest. Really rest.. your mind and body. We will try to help with prayers, that's what we can send to you.
menwhile have a great time with michelle and her beautiful dumpling, get a little rejuvenated. Jax has a strong Mama, that's why he's yours... you're the best for him.

Ali said...

Many prayers, as always! Enjoy your weekend away, it sounds like it is VERY long overdue...

My name is Sarah said...

Dear Lacey, This is Joyce. I just want to wrap my arms around you and give you a big hug. I have been where you are a few times over the years. If we were rich and famous we would be able to go to some plush spa for a few weeks and tell the world we are taking a break for exhaustion. Instead we push on for the sake of the children. Hopefully a little break with Michelle will give just enough juice to keep going until you get into see the doctor.

I am at a loss for what to say for dear Jax. I pray someone can figure out some course to help him. You have to be just so frustrated with his medical questons.

I am praying and thinking about you.

Emily said...

Oh Lacey... I pray for you and your family daily. I pray for answers, health, and peace. You truly deserve it. Enjoy your time in Park City.

jjpsmommy07 said...

You are in my prayers and I think of Jax daily. You are a great mom Jax is lucky to have you fighting for him. I hope you get some peace with your mini break.

sturpin said...

Lacey, sweet Lacey. My heart is full for you and Jax. My words can't express them though. As always, y'all continue in my prayers. May you have the strength you need for this day, and then the next and then the next. Hang in there, my friend.

Mama Mason-Mann said...

Lacey,
I just don't know what to say to you that others haven't already said. It's okay to crash. I had my crash back in May and I've been through nothing like you! So know that you are strong, but only human and at some point you will have to take care of you. Thoughts and prayers are headed your way AS ALWAYS!
love, aim

Melissa said...

Hope you have a great RELAXING weekend! You deserve to rest...FOR SURE!

Hopefully Jaxson will get some real answers soon?? UGH, why do insurance companies have to "rule" what meds our kids get to have...Poor little guy, he just needs to get better soon!!!!
Please let me know as soon as you can about Boston. Praying so hard that Jaxson get's a miracle treatment & he can just move forward...poor baby & poor Mommy!
Lacey, again...I hope you have a great relaxing weekend...Please get some rest!!
LOVE & {{HUGS}} from CT!

Kim said...

Lacey,
What an amazing mother you are! Sadly enough their are moms out their who would have given up. I know because I have a friend who works as a RT in a 24/7 center for sick children. Some of these parents never visit their children. I will pray for continued strength.

Baylee and Blair's page said...

Baylee takes both Viagra and Amlodipine. Our insurance pays for both... even though I pay $60.00/month for each one! The Viagra didn't do much that I could tell. But, when they started her on the Amlodipine the pressures went down and so far no more syncope spells!

I continue to pray that they step up and take the case. After all, they were VERY encouraging for us to come there when we did! JUST CALL OR EMAIL THEM! Doesn't matter if they don't know who you are! They will talk to you!

Hugs - Tiff

Chris & Kireta said...

Lacy, we'll be following your blog with prayers. You sound like such an amazing person. It's ok to have a breaking point, don't feel like you can be super mom all the time. We hope you feel better and of course we'll be praying for Jax.

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

Lacey we are praying for you and sweet Jaxs. Keep fighting Jax is so lucky to have you for a momma!!!

Suzie said...

Hang in there! I'm reading all these blogs tonight and just crying. I have nothing to give you, but good thoughts and prayers. I hope you have a great weekend.

Kristin said...

We may still be there Wednesday - if we come home sooner, I'll email you. One nurse told us they sometimes send you home if the echo in the morning looks good. But they have to sedate him, so I can't imagine with how he came out of sedation on the last echo, that we'll make it out Tuesday...
We moved again today (something about re-doing the floors and a bad smell)... we are now in 3088.
Good luck on the MRI.

Kristin said...

make that room 3087 - pod O

ParkerMama said...

Is this Dr. Day?

We are keeping you guys in our prayers!

Parker has a cath on the 25th.