Tuesday, March 3, 2009

Finally a quiet day

Today was a very quiet day, thank goodness. Last night Jax cardiologist called because my doc had called him and said that no one told me what was going on before we went home. He said he went down and looked at the CT scan with the radiologist. He doesn't think there is an active clot in his SVC. He thinks that it is all from old clots.
That's all I needed to know. I didn't feel comfortable knowing my baby was clotting on blood thinners. That is so dangerous. The other thing I wanted to know is how safe it was that his SVC was almost completely blocked. Yah there are a lot of collaterals going around it, but is that really safe, and he said it was ok, that some of the collaterals were pretty big.
Also the palliative care team that follows Jax at the hospital called today after they also found out what happened. (Isn't my pediatrician great?) She was horrified at what happened. She told me that she wished that I would have called them. I said I was so angry I just needed to get away from that place. She totally understood. But all the doc's involved are going to know what happened and that once again we are pissed at the care our baby recieved.

Besides the phone calls, I cleaned my house today from weeks of neglect. Jax also enjoyed a long bath in his own bath tub.





I also did some blankie shopping. That always puts me in a good mood. Picking out blankies for very special kids.
By the way, Phenny your blankie is on its way!!
Jax blankie blog is almost up. It has a name, but not a face yet. In the next couple of days you will be able to go there and fill out a request for a blankie. I'm very excited about that. For now, just leave me a message with your childs age, sex, and diagnosis. And make sure you let me know what kind of things they like, and an email address to get back to you.
Have a good night friends.

14 comments:

Junior said...

Very happy to hear that your ped is so good and got you some answers.

Jaxson looks so comfy and relaxed in his bath.
Big hugs, Heidi

Phoenix's Mom said...

So glad to hear you got some answers! The pics are great, Jaxson looks so comfortable after bath time! (one of Phenny's favorite times too!)
Hope you have a great week!

Conrad, Megan and Our Precious Keaton said...

The wonders of prayer hey Lacey! So happy that you both had a quiet day. Jaxson looks so sweet in his photos and boy does it look like he enjoys his baths - thats wonderful! Still thinking and praying for you all! God bless, Megan

Heather said...

Quiet is good.I am thankful for that.For peace to Jax's most likely,tired little body.I am so sorry that things went down at the hospital the way it did.Really and truly disgraceful.I will be more then happy to to talk to our wonderful cardiologist and see if there is a day on your trip that you can get into see her.Just let me know.Till then ... hoping for many quiet days.

TMI Tara said...

Oh those bath pictures are just precious. I'm so glad he's home and you're home.

You are amazing to think of others during this time. What an amazing example you are to me. Thank you.

JRS said...

Heck hath no fury like a mother scorned. Go get em.
---Jen

Cammie Heflin said...

I'm so glad your pediatrician is so wonderful! When we brought Addy to ours for the first time he asked "Why would you do this?" nice huh??

Erin said...

Lacey, I've enjoyed reading over your blog and the links to so many other cute kid blogs these past few days. I am pretty sure our kids had the same cardiologist. I'm sorry you've had such awful times at primarys. I would love to meet you and Jaxson some time.

Erin said...

Also, I have an extra 12 Fr 1.0 cm mickey button kit, is that something you could use or know of someone who could? Plus tons of enteral pediasure and extension sets. I even have a darling red zippie wheelchair we are looking to pass on. Anyone out there, let me know.

Melissa said...

I just ran across your blog from Kaci's blog (we've never met :) but I was so touched by your story. Jax is so beautiful and such a fighter- I am praying for you all. Thanks for sharing his story... he is truly an amazing child and I am thankful to have "met" him online. :) I will continue to pray for him and everything you are dealing with....also, this is really random, but I absolutely love the picture of him in your video "Jaxson chapter 1" right at 4:02 or 4:03 seconds- where he is lying in his crib looking up at you- his expression is so adorable and that hair is awesome. :) What a doll. Praying for you...

Little Miss E said...

Yeah for answers. Boo for shoddy hospital care! I can't wait to see the blankie blog! Maybe we can do a swap??

Kim said...

So glad Jaxson got to have a bath in his own tub. There is nothing like home. Praying you can have more relaxing days ahead :-)

The VW's said...

So glad that you got some answers and that you are having a better day! I was really worried about you and Jaxson!

Jax looks so cute taking a bath! Gavin HATES getting wet and taking a bath! If I took a picture of him, he'd be screaming his head off!

Give kisses and hugs to your little man!

Stephanie said...

I've never commented before but I can totally relate. We fortunately have a wonderful hospital here in Florida for my munchkin (he is three with t21, heart disease and lung disease from the chf). Still, it's almost an hour away and in an emergency they go to the closest ER. I have even had doc's have the nerve to ask how aggressive we want to be with his care "since afterall he is already delayed and has down's"!!! I just want to scream! "OK, because you're a jerk the next time your sick we'll just let you suffer"! Do you ever get that feeling??? *sigh*
I'm happy that Jax is doing better. He's so beautiful, you really are blessed.