Saturday, October 30, 2010

Halloween parade

Cardiology called, and he wants to double his diuretic through the weekend. We can't go any longer than that without needing to check his electrolytes, which she doesn't want to do now. We have no veins left to draw from, so she wants to wait until we absolutely have too. But we still need that lovenox level. It makes me nervous, as that is a huge diuretic dose for him! His normal dose is high for a child his size, but every time we try to lower it, he has respiratory distress. Of course, in the hospital he has been on diuretic drips. But that is in the controlled hospital environment. Cardiology also said the we could do some imaging to look for clots. My ped doesn't like the idea of putting him under yet again. An MRI, to me, would not be a big deal. Because of the trach, we don't have to worry about intubating him, which was always the main problem. Plus its not invasive. I would be ok with that. The cath lab, is much more invasive. And every time we enter his veins, we risk that he will clot them off, not good!
I think I will email his hemo doc myself. Maybe he can say what he feels would be best!

Yesterday was the Halloween parade at the boys school. It was really nice because Mondo has late start on Fridays, so he was able to come and help me!
Jax was the hit of the parade! I tell ya the Mickey was a great idea! He was stopping the parade, as teachers and students stopped to look and swoon over him. We had him on our laps, as there was no room for the stroller, and people were going nuts!
Sorry these pics aren't great. I'll get some better ones tonight. I don't have daddy's super nice camera. And trying to catch a moving target is not easy!




11 comments:

The VW's said...

Praying the higher dose does the trick for Jax, but that it's not too big of a dose!

Cute pics of your boys!

Thanks for the ideas yesterday, on what to do with Gavin! I am going to ask about the Robinul. He has been especially drooly lately and this might do him some good! He probably doesn't know how to handle all the additional secretions.

Have a great weekend! Love and Hugs!!!

Junior said...

Such a cute Mickey Mouse

Shelly Turpin said...

hoping they figure this out. I've never seen such a cute Mickey costume!

Shari said...

I pray the diuretic works! Poor kid! Mickey is so cute! And your other boys are so handsome! I love their costumes! I apologize for not commenting much Lacey! I have been reading! I will be back in full swing soon! :-)

Colleen said...

Very cute Mickey Mouse. We have to get Potassium levels checked every week (at home through his port)because he's on chronic diuretics. Not fun!

Holly W said...

adorable Jax!
And how fun that school does a Halloween parade, our kids aren't allowed to wear costumes to school here...

Alison said...

I can see why everyone swooned over your Mickey - how adorable!

joan's blessings said...

just found your blog...it came up on reccommended blogs on google reader. Such a cutie!
My 15yod Hannah Grace is a lot like jax except she doesn't have heart issues. She has a deletion on her chromosome 1, very rare...praying for him...
joan

Tiffany said...

So sorry about the meds complication. Praying that the doctors will be able to assess and that the dose for the weekend isn't too much for his little body.

And no wonder people were stopping you. That is a great Mickey costume. Although from what I've seen Jax makes pretty much any outfit look good. Hope you had a good weekend.

Mama Mason-Mann said...

Love the pics of the boys!!!! Just awesome. Sorry to hear about Jax's most recent troubles. I'm thinking of you as always.

Melissa M said...

I love, love, love the mickey costume!!