Wednesday, February 6, 2008

Second Extubation Failed

Yesterday, as we arrived to the hospital, Deedee had to be re-intubated again. The doctor told us she had been doing fine in Bipap, that they were doing the cough assist and suction by the hour... but at 3:00am her left lung collapsed giving them no other option... So, back to step 1...

Deedee was fine, under the circunstances. She was amused by DaddySlave as usual, watched some Mary Poppins, fall asleep for a while, then woke up in time for her night therapy. She is very strong-willed. Besides that, we don't feel too comfortable with her oxygenation as it keeps leaping between 85 and 94. She had been on 96 to 100 for the past days... We have to see if that improves...

We gathered some details that I hope will provide some more guidance at the hospital. They are not giving cough assist therapy because of the intubation, and that is important for success in the process. Intubated patients can have this therapy. And after extubation the cough assist and the vibrations/chest tapping should continue as specified by documents. I hope that for the next extubation attempt they keep these details in mind, plus a flat bed to help Deedee breath better. The doctor said maybe the next attemot will be on Thurday, depending on the X-ray. I think that may be too fast, but well... The X-ray will decide.

Finances... Not so good. I've finished my sick leave, so now I enter the non-paid leave. Mark has been in unpaid leave since December... I cannot go to work yet, not when we must be at the hospital to make sure things roll as they should. We take turns making phone calls and the like, too many things to do that are not visible to people but that is very tiresome and taxing for us, who actually do everything plus guard baby. We have reached $9,000 on the baby's account... We need $30,000 to transfer her to Wisconsin as she must go intubated in an air ambulance (non-profit and volunteer flights are not ambulances and have no resources for a patient like this). So we are short by $21,000... But we keep trying, we won't give up.

People, if you can gather up and ask for funds please let us know so we forward you a copy of the medical record review and the letter asking for help plus the ad. Some ideas are asking at traffic stop lights, doing a carwash, high schools can help raise funds with activities... By now EVERYTHING counts. If you know someone who can help FORWARD the information and contact. We have reached everyone we know, and every contact that has been sent to us. No news about Catastrophic Funds. MDA and other organizations do not help individual cases. We are hoping Club de Leones, Mazones, and organizations like that can reach us and help us... we have tried making contact without success.

Last nigh DrScroth from WI called me up, and at least I got some details answered. I know that over there the social worker is doing his best to try helping us out. At least that gives us some hope. An answer will appear somehow. DrWeaver from NJ sent us a very detailed extubation procedure that I forwarded to the doctors. Let's see how that goes...

So... We keep belief, we keep hope, and we keep fighting. Deedee inspires all this. In the end, we will reach the mountain's top. Nothing worth doing is easy... So we hang on, and go on.


No comments: