Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Friday, December 12, 2008

Synagis Approved

Well we got word that the Synagis shot we have been fighting for has been approved! Due to two of Caleb's doctor's fighting diligently on his behalf along side of us we got 'word' that an approval has been authorized. The doctor's haven't gotten the official documented approval yet, but a phone call was made to them that the insurance had approved it. We have been fighting and appealing for this shot since September. This shot is administered in phases, once a month from October to March. So, yes, we are a little behind. But something is DEFINITELY better than nothing. Thank you Dr. Nash and Dr. Scholnicoff for you hard work! We love you guys! God Bless you!

We also are preparing to start Sub-Q IVIG infusions. What this means is the following: Caleb has been getting his 'pseudo-immune system' via IV infusions via his central line once a month. We are now going to do SUB-Q (inserting a needle in the fatty tissue in the hips, thighs, gut, or backs of the arms) IVIG infusions once a week. Even though this is a more frequent infusion for young child, it theoretically is less of an infection risk than accessing a central line to do the infusion. The plan then is...(drumroll)...possibly removing Caleb's central line in a couple weeks! We still are ironing out what Caleb's blood draw schedule will be if we would remove the line. The line will have to be removed under General Anesthesia, surgery, because it is tunneled so deep into a vein and it cannot be removed like a peripheral IV. We will then see if we can get some other small operative procedures done at that same time. We do this because Caleb has been exposed to so much GA (General Anesthesia) because of all the surgeries he has had that if we can group some things together the better and try to limit his exposure to GA.

Brian and I are meeting with a local reporter regarding Caleb on Tuesday also. We will let everyone know the details when we know more.

I will post updates again soon!

God Bless you all!!

God Bless Caleb!!


Anonymous said...

How exciting!

Amy, Mike and Ben Russo said...

That is great news. What an amazing set of doctors you have. And yes, even a late shot of Synagis is better than none!! You are such a good momma to Caleb and he is so lucky to have you.

Eva Nichole said...

I am glad to hear how well everything is going and good luck on writing the book and the media coverage. I hope we will all get to see it when its done.
Keep up the great work!
Crystal and Eva

Chris B said...

Such good news!! How wonderful!!

Chris XOXO