Tuesday, November 4, 2008

A new medicinal adventure - -

Well - I am officially giving shots to my baby. I have been MORE than paranoid about this day and was praying it would never come. But it has and I have had to buck up and get brave! We started Finn on a medication for her seizures called ACTH. ACTH is a steroid hormone. It has to be given by injection twice daily for a week, then goes to once a day, then every other day. ACTH is in addition to her other medications. The hope is that it will knock out her spasms and then we can control her seizures with just one medication in the future. Some children even outgrow seizures altogether after having ACTH.

There are a lot of side effects to the drug(possible high blood pressure, facial weight gain, extreme irritability, lack of sleeping etc.) We really prayed about it and asked that if it was not right to put her on it, that something would prevent us from doing it. The cost of the drug is $28,000.00 a vial - total cost for the treatment could reach about $150,000.00. Our insurance covered it and when Paul was let go from his job, his boss offered to keep us covered with insurance until the end of December. So we took that as our answer.

The home care nurses came out three times to make sure I was doing the injections correctly. Even while I was shaking, I seemed to function. There is so much to remember while doing it - I hope I can keep it up and not hurt my little yummy Finn Finn. She hardly cries when she gets the shot. But she doesn't like being held down and that's when she cries. She has been more cranky and that's supposed to get worse - oh hooray!! Her face is supposed to swell up like Jerry Lewis but they say the crankiness will be more bothersome to us. Since it's a steroid, it keeps her hyped up so it's hard for her to sleep. Which means she will get more overtired each day and then none of us will be getting sleep. (Except for Angie because she can sleep through hurricanes, earthquakes and pretty much anything!) Her appetite is already starting to increase -and we all know she didn't need to put on any weight!

We took the Christmas card pictures last week(not that I ever get them mailed). My friend Cindy found Thanksgiving jammies and so we took pictures in those with her cute turkey clip made by my friend Jolene! I know I'll take more pictures through the season but if Finnie is as miserable as they say she'll be - we might as well have a few good pictures to remember the season!!

I am just grateful for medicine that is available and covered by insurance. It is a blessing that Paul is home right now to help with Finn and Angie. (He may not see it as that, but I do!) The job will come when it is supposed to but right now - we'll concentrate on our medicinal journey! Thanksgiving will be very different for us this year. The lessons we have learned are overwhelming and we are so thankful for so many things.

We are also staying up for all the election results tonight. All we know so far is that we have a new president! Wow - what times we live in. God bless you all.


winspears said...

In sent you an email with my girlfriends blog and her daughters website. Kaylee was on ACTH too! Check out her pictures...and read her story...may be helpful to talk with someone who has walked in your shoes!

Love you tons!
P.S. I told Shanna a little bit about your story...she'd love to chat sometime. It is developing an IS website....

Elizabeth Lynn said...

Poor baby! I'm sorry you have to do that to your cute baby. I want to see her super bad! she's stinkin adorable. You'll get better at giving her those shots Aunty. No worries! I love you!

Shanna Grimes said...

Hi Care, Hope you all are hanging in there with those shots. I will never forget that process as long as I live.

Just some tricks of the trade...
Draw up your full days Meds all at once. However, be sure to leave the drawing needle on while it's in the fridge. (cold needles hurt more). I would leave all the Meds in the fridge door in a ziplock.

Set your cell phone alarm to remember all your tests and doses.

Use a small bandaid to mark the last leg u injected. It's hard to remember with the stress of the injection. I like cute cartoon ones like Disney princess. Made it easier.

Warm compress can help with injection site soreness. Just apply for a few min after.

Rest when she's asleep. There will be plenty of time to clean later when this is all done. Caffine will only keep u sane for so long ;)

I will email u my phone number, if I haven't already. Please, let me know if there is anything I can do to help.

Take care,

About Me

I am a mom of two beautiful girls. Our family has been greatly blessed by the Lord. His message of love and hope needs to be shared and my girls are a testimony of His plan for all of us.