Tuesday, April 20, 2010 10:49 AM, EDT

Over the past two days Elizabeth hasn't been able to keep her oxygen saturation level up, and her oxygen has been turned up alot. She went from being at .8 to 3.5 liters. The doctors decided this morning it would be best to put her back in PICU so that she could be put on a high flow oxygen mask and to start another dose of steriod treatment for a few days. The pulmonologist said that he had been in contact with the speicalist in Cinncinati about her case, and the recommended course of treatment is to do the short bursts of steroid treatment as needed, but to wean her off when the steroids start taking effect. The steriods help her with being able to keep her levels up but also keep her lungs from growing as well as the need too. The pulmonologist has gotten an official confirmation on her diagnosis and she does have Pulmonary Interstitial Glycogensis, with a different variant. Basically since she also has heart problems (pulmonary hypertension) the disease she has is slightly worse. But is still a good diagnosis. It will just take time for her lungs to regrow the tissue. So as of now we dont know how long she will be in PICU or the hospital. She wont be able to take a bottle for a while either, so they will continue to feed her through the tube in her nose.  We are disappointed about this "set-back" but we know that eventually she will be much better and be ready to go home.