In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Wednesday, February 27, 2008
ONE LAST HOPE
Well, we got the news on Tuesday from the medical plan that they will not cover any expense for transfer or hospitalization in the US, so they FINALLY gave us a lettter stating so. Almost two months for that... No comments... At least we got the 2nd opinion that sayed the same we have been saying: the best place to take her is Madison or Newark... Gee, thanks for the newsflash... (sight).
So, now our last hope to get to Newark is if the hospital accepts Deedee. The doctors had say yes before on the phone, but by now I trust no words, but black and white. So we are hoping that they keep that option open and accept Deedee. Catastrophic Funds will give the air ambulance to get there if they say yes. We await an answer anytime soon...
So, whatever the outcome we have been dealing with moving stuff from the house at Hormigueros to my aunt's house. It's been a mess... Too much stuff to sort too soon too fast... I guess some things will stay in the house for others to dispose of. We can't do more.
Baby is hanging on. On Sunday had a slight fever so she had to take some antibiotics via IV, and so she has been a bit moody/cranky... But besides that she's doing good. A therapist discovered her addiction to the suction tube... And all in all she's been getting nice plug-outs. And word of the cough assist is spreading, people actually asking for it is nice news. All in all it makes one feel good when others get a benefit from one's efforts.
So... We are tired, sleepless, and praying that we get the answer that baby needs. Only God knows what is best for her. Choices has been narrowed to Newark. Now, let's see if that is the path we are granted... Whatever happens, we know we have done our best to do what is right, and we have fougt for it. I wish I could give it all a bit more, but my own illness has been putting me down (diabetes). I need the rest as a mandatory law... Wishfull thinking right now... Too much stress and uncertainty to have a nice nap.
Daddy stayed with Deeva today, as Mommy was taking care of packing things up at home. Soon he will arrive to help a bit, and so tomorrow we can take care of some loose ends. Hopefully we will do everything before 5pm, so we can go on to see our diva for at least two hours. We must keep her feeling she is much needed, and much loved.
So... Holding on to the last string of hope regarding treating Deedee with the complete NIV way. We know that if we get a no, they may try extubing her but it is a big gamble that may fail and end up in a tract. We will have no escape from that if fate turns the table against us... So keep on praying and sending good vibes our way. All in all, we will keep on fighting, and we will keep on faith in knowing what is best for Deedee... simply because it is in God's hands.
10-4
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