Friday, February 15, 2008

Among puppets and cherries

This week has been very hectic… Filling up paperwork, gathering up paperwork, calling, meeting… making miracles happen… It all has been tiresome and draining… but it all has been for a good cause. We finally got a date at Cathastrofic Funds, we sent the medical insurance papers for the 2nd Opinion at Massachussets so they decide what to do when the results arrive… and we will take papers to a Shriner’s delegate tomorrow morning. Someone has to respond…

In the meanwhile… Our DeeVa is still intubated, oxygen levels at 25%. She’s been gaining some weight, filling up her arms and legs after the mandatory starvation she went through weeks ago… I’m glad she’s looking good, building up strength and being happy and aware at all times. She’s been having non-stop movies, and music, and puppet shows. The staff at the hospital has been very thoughtful and kind to her. It is very much appreciated since family and friends are not able to visit due to distance. Deirdre smiles with everyone and seems to enjoy every second of social interaction. A diva indeed! Today she was all dressed up in red and white cherries. Definitively, red is her color. We celebrated our Valentine's day today. Yesterday was a bad day, filled with bad vibes... But today things got better. And it showed just by watching our gift smiling at us.

The way things are going keep on being a bit stressing… We don’t know if we will be able to take Deedee to New Jersey… Our hopes lie in the Funds to pay the air ambulance. Once there, we will need much guidance to work things through. New Jersey is quite expensive in its overall, and that is very scary… We don’t know how much will cost the hospitalization, and we know that no amount we raise will suffice… I’m hoping by some miracle the plan accepts to pay hospitalization or at least a percentage. We will need help getting a place to stay at NJ or NY…

They may try extubating her next week, depending on how things work out. I think that if they put their hearts to it, the effort may succeed. By now, one of the biggest problems is consistency of the physical therapy and respiratory therapy. Diligence on cough-assist, vibrations, chest tapping and suction is a must. Some do everything outstandingly, others don’t. We hope we can get hands on training so we can help put things under control so everything goes well, either here or elsewhere.

I asked for DrRodriguezSantana, whom was referred to me as the best pneumologist on the isle… I would like to know his opinion on everything we’ve done so far and what we intend to do with Deedee. I hope he can be reached soon. I think the most important doctor right now for Deedee is a pediatric pneumologist… Lung failure is the main killer of SMA kids. Besides him, a geneticist… By now we count on DrCarlo when we finally get off the hospital. And we may try to get DrScarano, a neurologist, when the emergency is over…

So… It all seems like playing chess… Move a piece here, have a consequence there… We trust all the moves we are making are guided by God. We put things in His hands… What will happen will be the best thing for Deedee. We have done every human step we could take… Now, to trust His works, to trust Deedee will heal because He wills so. We thank everyone who has helped us one way or another… We wouldn’t be here without you.

Pray for the families of Zenaida and Praxedes. They are at the hospital, and need good vibes. Pray for so many sick children who are abandoned at hospitals and elsewhere… God’s mercy and justice shall wrap us all.


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