July 30th update

Hi Everyone,Here is the latest update for Daniel. He had a new feeding button put in on Monday the 23rd of July (surgery). Daniel was so confused why he went to a "weird" recovery room. It was stage 2 before you go home for outpatient procedures. You see, he has always stayed at least overnight if not longer.The nurses and I had a good chuckle.When we had a sleep study done that very night. He does not need the oxygen anymore at night. Praise the Lord!! However, he does need a BiPAP machine. He wears a mask and the air is pumped into his lungs with pressure while he inhales and the pressure lightens some while he exhales. It keeps his entire airway open (no apnea episodes anymore), it provides for better exchange of gases in his lungs and he keeps his oxygen level up at 97% instead of 85% without the BiPAP. It is described as an external ventilation device.We also have a mechanical vest that arrived the end of last week to help Daniel with chest physical therapy. This is the pounding on his chest/lungs to move the "junk" around so he can breathe better, much like the children with cystic fybrosis. Please pray that Blue Cross will cover this. The cost is $16,000 and Dr. Sabogal says that Daniel needs this. He said he has documentation for Blue Cross, but it also took them 13 months to pay Dr. Phillips for the pre-authorized original VEPTR surgery last May.We are getting set for San Antonio on Aug 23 & 24. We fly out the 22nd and back on the 25th. We have great rates on our airline tickets!! Less than $700 for all 3 of us!! :) Also, through our pediatrician's nurse, looks like we may get a discount on a suite with a kitchenette at a Marriot Radisson Inn only 1 milefrom the offices and hospital in San Antonio!! Praise the Lord Again!! :)Last, but not least, my dear, dear friend Jennifer and her husband Jeff are putting together a benefit golf tournament for Daniel and the mounting medical costs!! It will be on Sept. 22nd at their country club in Mount Dora, Florida.I am totally blown away and humbled by all of this including those of you who have sent cards, letters and help already!! We have not had to go into debt thus far for anything related to this trip so far!! Praise the Lord Again!! Thank you for all of your love, support, thoughts and prayers. Bill and I couldn't make it through all of this without such a loving group of family and friends.We love each and everyone of you and pray in return for you!!Love, Dawn