Monday, June 25, 2012

Sudoku anyone?

Our warrior boy is finally getting back to somewhat normal. Although he still seems very dry, and most of the time his color is still pretty yucky.

Although he is finally starting to lose all the ugly bruises and battle wounds the hospital doles out.


When they tried finding an IV in Jax, the only place they had luck was under his armpit! They tried tiny veins in his chest as well, but he really just has nothing left.


Which leaves us in our current situation. Hematology came and saw Jax inpatient. We'd been trying to get our appointment scheduled, but referrals and such took forever! When we finally made an appointment, the only time was during his hospital stay, so she said just to have them come down and look at him then.
Ok, here it goes. Jax has to be on blood thinners for the rest of his life. Right now he is on lovenox, which is given by shot. I've been poking my son twice a day for 3 years! The doc would like to switch him to coumadin, but its much harder to regulate in children. It would require frequent blood draws to check levels.
Uh, ya right! Its hard enough to get monthly lovenox levels on this kid!
Apparently lovenox has a bad side effect of making bones brittle. Of course, when I heard this one, I about fell on the floor! Jax has severe osteoporosis right now.
Severe!

Like, "I can't believe he hasn't had more than the one break" kind of severe!
I guess I should be proud that I haven't broken my sons legs changing his diaper or moving him around? Ahem!

Anyway, she really wants him off the lovenox, but we can't do coumadin knowing how hard it is to get blood from this kid. Its just too risky. She also told me that Jax can't have a port!
Huge slap in the face to me. With all the veins in his chest gone, there is no place to put a port.
So basically, we're kind of screwed!

Many times Jaxson reminds me of that game, sudoku. You know the one? The one where you have to put all the numbers 1-9, but they can't be repeated?
Sometimes you think you have it figured out, only to find you've used one number twice. Or you need a number, but it can't go there.

Jax is such a puzzle. It seems impossible to get all of the numbers to go where they are supposed to go.
We can't do this because of this, or we can't do that because of the other problem.
In the end, we usually find a way, however difficult it may be. We have a follow up Hemoc appointment in a couple weeks. We may be looking at a full venous scan, to look at what Jax does indeed have. Something I've wanted for a long time anyway, just so we know which veins are patent in an emergency situation.

We'll get 'er done, we always do!

10 comments:

ParkerMama said...

xoxo

Becca said...

Oh, this hurts my heart to read, and to see those photos. He's such an amazing little fighter - there's got to be a solution somewhere!! Sending positive thoughts, Lacey, but wish I could do more. (((hugs)))

Anonymous said...

Such a big, brave boy!!

Anonymous said...

Hang in there brave little warrior!

Rochelle said...

Bless him, praying you get some more answers.

The VW's said...

Those bruises on him make me sad! Poor boy! Praying there is a solution to all of this! Jax is certainly great at keeping his Momma and all the docs on their toes! Hugs to your warrior boy!

Mama2Kayden said...

Would a PICC line work in lieu of a port? How much blood do they need for the monthly test? Maybe can get small vial from fingerstick instead of vein? I know this is very frustrating for you. So sorry. Your boy is a true warrior and so handsome!

Lisa Lampman said...

So glad to hear that Jax is getting back to himself! Have you noticed any improvement since the diet started? How are things going with the eye poking?

Anonymous said...

My heart breaks for Jax!! What a little warrior!!!! Sending lots of love and prayers to you and your family.
Sam xxx

Melissa said...

I know you'll get it figured out, but I hate seeing the pictures of all those bruises!