Freaking again....

[Christina's_Mommy]

ok, I'm freaking out again....... I talked to Dallas again yesturday. We have to start Christina on Procrit at the begining of Feb, get her on an iron supplement and get lab work done weekly and weekly visits with the ped. Oh God....:nervous ...gas prices are going up and I have to take 30 mi trips weekly now. Procrit is so expensive.... Side effects can be heart problems including attack and stroke, sezures, high blood pressure....:faint My baby....:cry We will be meeting with so many people the week of her surgery. If she gets RSV anytime during Feburary, the surgery is proposed 6-8 weeks from the time of infection......I just looked up the cost of Procrit....90 a shot!!! I don't know if I can do this....:scared :pullhair :banghead

Sorry for this rant but....I'm panicking

[mrs j]

Carol, i really do feel for you, we are in a similar boat, money is tight, and we have to pay flight or boat fares to England, cost a bloody fortune, i dont know where the money is coming from, but like everything else, it usually works out in the long run. Try not to worry about the injections, although i dont know a lot about them, as our surgeons dont use them over here, but im sure they will be fine with Christina. Im thinking of ya's and am sending you lots of hugs, i know its a really tough time.xx

[Amy K]

We just finished up Cam's 3rd procrit injection yesterday. It's tough putting them through a finger stick and a shot for 3 weeks in a row, but if it could possibly lower the chance for a blood transfusion then it's worth it to me. I believe the serious complications possible with procrit have never happened in an infant, only adults...I think that's what I read.
I know everything is stressful right now!
Won't insurance cover the procrit? After ours paid, we only had $60 out of pocket for it...and I think we had the generic too, ya may check into that.

Hang in there!

[three.little.boys]

Carol-

Calm down and breatheeee............

OK...now, just know that this is for Christina's own good! Quintin is scheduled for Procrit injections to start on Jan 29. I have looked into Procrit a lot...andthough there are risks, they are very small for infants.

Insurance should cover it. If not, then it $90 x 3- $270 to lover Christina's risk of needing blood products (which can bring on a whole new set of problems!).

Do you have parents or siblings who can help financially? Also, I applied for financial assistance from CFA (craniofacial association) to help offset tha cost of the travel.

Hope you are feeling better about this. You CAN do it to ensure your little girl is as healthy as can be. Be strong!! That is what we Mommies (and Daddies) do!

Also, keep Christina away from all public places...don't take her with you to the grocery store, etc. Also, put a bottle of hand sanitizer inside your front door. Request that ANYONE that enters your house clean up to prevent germs. If you do this for the 3 weeks before surgery then Christina should stay nice and healthy. Does she go to Daycare??? Perhaps they could go to extra effort to keeps germs away from her, or could a grandparent watch her until surgery??? She'll do just fine!!

Sadie

[Christina's_Mommy]

no. No daycare thankfully. I am feeling better about it today. We don't know about insurance and the Procrit yet. We have to get it approved. hmph.. The only daycare like setting that Christina is in is the church nursery and it sounds like that next month she won't be in there at all. I hate the freak out moments. I wish it was all done and over with already.... thanks for letting me vent.

[ellanoah]

May I ask who your Neurosurgeon is?? I am trying to find a Doctor in Dallas to get a second opinion from. My daughter is 3 years old and was just diagnosed with Coronal Cranio. At her age the surgery is alot more complicated than with infants.

[EmmaLacey]

Ellanoah - there is a forum under Resources called "A listing of craniofacial centers'. Check through there and see if you can find some more Doctors in Dallas.

[three.little.boys]

Ellanoah-
Her surgeon is Dr. Fearon of the Craniofacial Center. Quintin (my son), Christina (from this post) and Camden (mom's user name is Camsmom) all use the same surgeon, Dr. Fearon in Dallas. Here is his link:

http://www.thecraniofacialcenter.org/index.html

Sadie