Tuesday, January 29, 2008

We need to move ASAP


So far: They are playing with us in the hospital. Yesterday, the 28th, they gave me a notice from DrBach that he sent on the 22 asking them what we will do over there without medical insurance to cover anything in the hospital or the transfer. And so the hospital automatically think that he wont receive her. If I am to transfer her they gave me 3 weeks to do so, or they will simply tract her. Period. That they have done that for 30 years, it keeps the children alive long enough and is the only method known in PR. That I wont have the facilities or help for anything else. I spoke with DrNavado at NJ, he says he wil receive her and is surprised at the hospital's attitude... Oh, well... He is to send an email saying that, but now let's see if they feel like reading it over here, and like showing it to me.

So I have 3 weeks to raise the $25,000 for the transfer, and to find out of how Deedee can get medical help/aid/whatever in NJ when she gets there. I am trying to contact the UMDHNJ social worker, Esther Mesa, so she can try giving me some light on the matter... I am to try refinincing my house to get Deedee out of the island. She has no further hope in here. And I am not turning back, we plan to get to NJ to stay, if God wills.The people who are in power and who could help just wont help. Everything is a big NO thrown in our face.

I just got a call from the medical equipment rental asking my adress so they deliver and setup things in my house... because patient should be out of hospital in 2-3 days. (???WTF!!!) I asked them how that was possible when she is at PICU has not been extubated and they are waiting on the cough assist to try it, so she is transferred to NJ... They have not called back yet...

We are getting quite desperate... I am trying my best to stay focused... People, pray a lot for us, so we have wisdom, a clear mind, and the strenght to go on. We need solutions and action, so we are working towards that end. I am quite dissapointed at the lack of interest in local hospitals to get to know the disease for real and to know the ways to deal with it keeping quality of life. Tract or no tract, the cough assist is key in the treatment and they wont acknowledge this. I have given them all paperwork, contacts with doctors, anything so they can have evidence to do this... And only one doctor, DrDiaz, showed enough interest to at least try it all once (the once that will happen by this week's end IF the cough assist appears!). But he is not there constantly, because they rotate the head doctors every week... And this week I was told things very clearly: Get the transfer NOW or never. 3 weeks...

I contacted Cathastrophic Funds as we have gathered all the paperwork. We were told they are not giving dates, all is stopped, and we were placed on a waiting list... That they may start giving dates within 2 months... I ONLY HAVE 3 WEEKS! It doesn't matter, as there are other cathastrophic cases in wait for the same reasons...

I'm selling my house at Hormigueros. If anyone out there is interested, please let us know. Also, donations can also go to my paypal account hivequeen2000@yahoo.com, or to PO BOX 456 Mayaguez, PR 00681.

Someone got free airplane tickets for Mark and for me. They just need a date, we are working on that. Mark may need to go before us to fill up paperwork in NJ... We don't know yet. Now what we need is to get the money for transferring baby, which must be done in a medical airplane.

Pray for us so we keep wisdom, courage and strenght for what is to come...


1 comment:

StellasMommy said...

I feel so bad for what you are going throught. I posted before on here as I have a 10 month old daughter with SMA I. What specific needs do you have for equipment? Is she getting a gtube or already has it . . . or still eating by mouth? Will your mail accept baby formula that is better for these kids than regular formula? I want to help but I need to know what supplies you could really use. Did they give you a suction machine for secretions so you can get them out of her before her saturations drop? I have suction catheters and little suckers, masks for coughassist/rescusitation, syringes, feeding equipment . . . let us know what specific needs you have at this point.

Praying for you!
Sarah Turnbull