Wednesday, March 31, 2010 11:59 AM, CDT

Throughout the week we told that it would take time for Elizabeth to get better. It was recommeded that a central line be started in one of her veins to be able to get her medication in to her system without having to have numerous IV's so that was started sometime during the week. Elizabeth is recieving fentanyl for her pain, a medicine to paralyze her and a sedative. During this time were told that a preliminary diagnosis of Pulmonary Interstitial Glyconesis had been determined based on her lung biospy. This rare lung disease has a good prognosis and case studies have shown that 5 day steroid treatment has shown to be effective in other children. Elizabeth was started on her 5 day treatment for the lung disease and she was also started on Sildenafil for the pulmonary hypertension. We were told that the Sildenfail would basically take the place of the nitric oxide, she should be able to wean off of the nitric once the max dose of Sildenafil was reached.

Monday, March 29, 2010 9:00 AM, EDT

On March 29th at 1 pm Elizabeth was taken to Surgery to close the PDA valve on her heart and to have a lung biopsy done to try and determine if she did have an Interstital Lung disease. Elizabeths surgery went well and she was trasferred to the PICU for recovery. It was expected that she would recover 1 night in PICU overnight and be back in her room the next day. After her surgery Elizabeth was unable to be taken off the ventilator. She could not keep her oxygen satutration levels up and struggled to breath.  Later that night we were told that Elizabeth was not doing as well as they had planned and they felt she needed more help from the ventilator in order to get better. The doctors told us that they thought the surgery/lung biopsy had irritated her lungs and made her pulmonary hypertension worse. The Doctor told us that Elizabeth needed toe be paralyzed and sedated so that the machine could take over breathing for her to give her lungs time to recover, she was given pain medication and they began nitric oxide to help with her pulmonary hypertension which she responded well too.

Monday, March 22, 2010 10:00 AM, EDT

On March 22 2009 we took Elizabeth in to the Emergency Room. She had trouble throughout the night keeping her oxygen saturation level up and appeared to be having trouble breathing. She was admitted to the hospital by her pulmonologist in hopes of figuring out why she her condition had gotten worse. The pulmonologist told us he suspected that  she may have an Interstitial Lung diease, but to determine what type she had a broncospy and possible lung biopsy would be needed. Elizabeth also saw her cardiologist during this time and found that he PDA valve in her heart had opened more and it was recommend that surgery be done to close the valve.  Elizabeth was scheduled for the broncospy and did well recovering from it. Her surgery and lung biopsy were scheduled for March 29th.