The day has not gotten any better. Elizabeth is still not doing well. Her saturation keeps flucutating. She has been paralzyed and heavily sedated since last night. This morning we met with the PICU Dr and Pulmonlogy and it was decided that Elizabeth is a candidate for ECMO, if she continues to get worse and her blood gases do not improve she will be put on it. The doctors explained all of this to us and told us it was our choice and wanted us to make a decision today in case it becomes emergent that she needs it. Extracorporeal Membrane Oxygenation (ECMO) is a method of long-term lung and/or heart support in infants, children and adults with severe pulmonary and/or cardiac failure. At this point they are not sure what is going on, we know she has an infection and pneuomia but they are saying she should have been improving by now. So its all an unknown right now. ECMO has alot of risks involved with it and and we were told she has about a 50-60% survivial rate on it. The procedure to start ECMO is very risky and then trying to get her off ECMO is also going to be challenging. ECMO is a last resort and basically our last option to help Elizabeth. We do not want her to go on ECMO, we both fear that she may not be able to handle it but at this point we have to prepared. We are still VERY HOPEFUL that she will not have to go on this. But we are prepared and have signed consent if it comes to it. We have also started discussing lung transplant evaluation for her. But she will have to be well and can not be on ECMO to even be evaluated so that will be much further down the line as a possible treatment. We are also still waiting on her custom trach to get here, hopefully tomorrow. We really hope that it will make some sort of difference as well in providing her with better ventilation.
As of a few minutes ago, her most recent blood gas is unchanged so we are still hopeful she can turn around and improve. PLEASE keep her in your thoughts and prayers. It is going to be a long night, we will post as we know.
We are thankful today on Elizabeth's first Thanksgiving that we were chosen to be her parents. And we are thankful for her strength and courage. She is so amazing and deserving of a long and happy life. We continue to fight for her and hope that we make the best choices. We are also thankful for the doctors, nurses, and other caregivers who have provided her with the best possible care, I know I get frustrated alot with them, but without them she would not have made it as far as she has! We are also thankful for the support that each of you provide for us and for Elizabeth.
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