Unfortunately we are back in the hospital! Elizabeth started having problems keeping her oxygen saturation up and needing increased oxygen on Monday and we took her to the ER, she seemed to improve and stabilize on her own while were there so we were sent home. Throughout the night and into the next day her condition worsened and she was requiring alot more oxygen. She went from 3 liters to 5 liters. We made it to her pulmonologist office and were admitted from there to PICU at TC Thompson. She has been on high flow oxygen and nitric oxide since yesterday. The reason for her rapid decline is still unclear, a test for viruses (like cold or something similar) has been done and we are waiting for those results. She also had another echo done on her heart to check if her pulmonary hypertension has worsened and could be the cause.At this point she is doing ok with the nitric and high flow oxygen. The doctors are working on a plan to figure out what the next step will be once she is stable. The rapid decline we see with Elizabeth when her saturation drops so quickly and the fear of not making it to the hospital in time or something bad happening at home has become a major concern for us and the doctors. At this point we are just waiting to see.
I try not to express my fears on here but the past few days I have been more scared than ever about Elizabeth and her condition. I hope that Matt and I are making the best choices for her. This is the hardest thing either of us have ever had to do and it breaks my heart to her struggle everyday just to breath. I wish more than anything that we could just make her better. I hate relying on other people and in this situation thats all I can do, is hope that the doctors are providing us with the best options and we make the right choices.
Please continue to keep Elizabeth in your thoughts and prayers, she truly is the strongest person I have ever know!
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