meds. etc

14 Jun

It’s all about medication now for lainee

a little too much of this and not enough of that

it’s confusing.  She’s very good about reminding me about her finger pokes throughout the day.

She was transfused today with Zinnia, they were both 9.9 (crazy)

Lainee is still recovering and watched closely, she will have labs again on Tuesday

Her organs are compromised because of the iron overload because of transfusions in China without chelation therapy

Whew

But now, we are ending the oral chelation therapy because of her kidney and GI issues.  For Now.

Zinnia, on the other hand has not been responding to the oral chelation therapy.  at. all.  (xjade)

So, we are continuing the oral chelation for her but have added a nightly infusion.

The nurse who came to teach me was so GREAT!

The nurse who came to teach me was so GREAT!

She sleeps with a little pump that releases meds into her system while she’s sleeping.

AND if we have to hook her up before heading out to eat, no problem.

adorable Zinnia.  good job girlie!  What a great attitude!  she never complains

adorable Zinnia. good job girlie! What a great attitude! she never complains

Adorable Vera B backpack hides it all.

I feel like a nurse.

I really do.

If someone would have told me two years ago that I would be doing all these things with these precious girls I would have said,

“no. way.  I cannot do it!”

But here we are

doin’ it.

Easy Peasy.

“It is God who works in us to will and to Act”

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One Response to “meds. etc”

  1. Karla in MN October 5, 2013 at 8:54 pm #

    We adopted 2 children with B Thalassemia Major from India 10 years ago on blind Faith! Our Spunky Josy was 3 and our sweet Sanjay was 2 and a half. We knew nothing about the disease except what I read on the internet. My husband was deployed to Afghanistan when we began the adoption process. It took 9 months from the time I first saw their photos ( we hadn’t even considered international adoption at that point) to the time we brought them home ( Hubby came home from IRAQ 4 days after I came home from India with the kids!) Sanjay was going through a BMT in February 2011 when he developed a brain bleed and God took him home. We miss him every day! Praying for your Thal girls, especially Lainey…Sanjay developed Fanconi Syndrome ( Cranky Kidneys) on Exjade, and we had to reduce his dose. Meds have always been a balancing act for our two with Thal. They have always been transfused every 4 weeks since we brought them home. They had porta-caths put in after their first USA transfusion (their poor little veins were worn out and it was so painful !) They wore their desferol “balloon” pumps for 12 hours every night for years before Exjade became available. Now Josy is on a daily cocktail of Exjade, Ferriprox and Hydrea for chelation and to try to space her transfusions apart even farther and to get her iron down. She has formed an allergic reaction to desferol, so we changed the game plan. Currently she is still transfused every 4 weeks, and her hemoglobin pre- transfusion is about 8.5. ( she typically doesn’t show any tiredness or headaches unless it gets below 8.2…which is really rare. Well, anyway…it has been really nice reading about others adopting kids with Thal Major…we don’t know ANYONE else with it. I have had to become a “nurse” too, and advocate care for our kids, but it is sooooo worth it! God bless. You can read more about Sanjay on his CaringBridge site if you like. Your kids are gorgeous!

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