Deedee is quite aware of whatever is going on around her. By now, she knows the songs of Sound of Music and from Mary Poppins at least by ear... She enjoys when we do the fingerpuppet show while these songs/movies play. She smiles with a wide grin many times, especially whenever DaddySlave is around. Yup, she's daddy's girl. She keeps on reacting to every sound, every movement, every voice... By now she can recognize specific nurses/PT's and the social worker (who is very fond of playing Octi's musical tentacles... reggae style). Deedee keeps on enjoying pulling the strings, being the cnter of attention... And whenever we are to go eat or go to sleep, she starts crying, fussing and dropping her oxygenation so we stay put until she is fed up with us. A DeeVa, indeed.
We were granted the suction wand so we can at least clean up her drowning/drooling messes, and oxygen is at 30%. Her oxygenation stays within 97-100 whenever she rests on her left side. Positioning her resting on the right side leads to steady 92-96. Her lungs seem to be healing up, let's hope things stay that way.
The doctors have been trying to follow most of the guidelines of NIV. They contacted DrSchroth, hopefully open communication will follow (fingers crossed). Will say no more so I don't jinx it. Still, consistency of the physical therapy still has to be worked on... The method employs AGRESSIVE physical therapy, the agresiveness of what we see still lies on the mild side... Cough assist should be followed by vibrations and CPT, not left as a stand-alone procedure. Some PT's do this to perfection, others dont even bother completing the coughing session acurately... And THAT is a big problem. So this is a work-in-progress situation that can be remedied (hopefully) by daily observation and complaints.
About the medical plan woes... Yesterday we went to the med plan and gave them the complete record. They will send it to 2nd opinion at Massachussets (affiliate hospital for e-commuting... I still dont see what good that can do... except the hospital from US saying that the NIV is valid and that it is recommended, which we are hoping for) so when they get the results they will pass it to Director of the med plan to see what they will do. If they would pay transfer/hospitalization that
would be peachy. But I am realistic, it would have to be a BIG exception (the have a policy against doing this in congenital disease cases). So...
Since the contact at the medplan was the director of Catastrophic Funds years ago, she gave us some ideas we could try at that government office... We had nothing to loose, so we went to the Catastrophic Illnesses Funds office. The director said she
does not qualify because it is not for mayor surgery... In the conversation it came out that she's still intubated. Apparently the lady was asumming Deedee was at home... So she will see IF they get funds before next Friday and she can ONLY pay the ambulance ticket one way. Well, not perfect BUT al least that would be something. But as everything else, this is an IF. We pray that at least we get this help. Everything else can be solved step by step...
If we get the air ambulance ticket to go over there, I know the first two months will be to pay by ourselves (which we cant)... but maybe getting the lease of an apartment so they see we mean to stay will help with hospitalization... I'm assuming its the same in NJ and WI... with different laws applying, of course. I am not sure of this... We need reference from people living there, or who can help us get a place there. We need a physical living address for Deedee in order to get the governmental help.
So... Seems the doctors will wait until next Thu or Fri so I have a decition
from the medical plan to see what they will do. I hope this is so. Trials of intubation/extubation are not good for anyone, so the least they are done the better. Besides, Deedee needs to gather up strenght to achieve a successful extubation to BiPap!
Whatever happens, it is all in God's hands. We have moved/spoken to everyone that matters and that can make things happen... As a proverb says "Sitting still and wishing makes no man great, the good God sends the fishing but you must dig the bait". We have digged the bait. The rest is God's will.
Since I've got some requests for our contact information, here it is:
Vivian's Cel: 787-313-6955 Mark's Cel: 787-806-7196 has voicemail
In FACEBOOK look for Vivian Rivera. I have pictures of Deedee at the
hospital. You can also look for Mark Medina.
Internate donations to Paypal: firstname.lastname@example.org