Lilia didnt get better after 1 week on ECMO and many attempts to wean her off. The surgeon came to me and said you have 3 options. 1. Take her off the machine and let her go 2. keep her on the machine and see what happens. 3. Get her a heart transplant.
I asked him what her chances were of getting off of ECMO on her own and surivivng if we waited. He said he didnt think she would last too much longer on ECMO and didn't think she would ever be able to get off of it without a transplant..So right away we "listed her" becuase she was so sick she would get a heart as soon as one in her size came available. We wanted to do EVERYTHING in our power to save her life.
We waited 1 week for the heart, and it was the hardest week of my entire life. Lilia had a good ecmo run, the best they have ever seen acccording the the ecmo profusionist, but her time was running out. They told us that the longest they had a baby on ECMO for and come off suucessfully was 3 weeks..Lilia was already at week 2. One day her lungs were so bad that they even took her off "the list". Dr.Dipchand said that if a heart had come in that night, she would of not been able to give it to Lilia.
I could tell that some of the nurses were losing hope, Lisa an RT who also runs ECMO, had his wrap lilia jsut so that we could actually hug her while she layed in the bed, sedated, parlaized, full of tubes wires, and an open chest..she also took pics with our camera for us. it was one of the ebst thigns somone could do for us at that point, I still love the pictures to this day.
However lukily with a special ventalitor they managed to get her lungs into better shape. And on January 12th (the day Lilia turned 1 month old) We got the news.
We were at Lilia's beside, it was about 10 pm at night when Dr.Dipchand walked in. our hearts jumped as we thought she came baring good news. However she was so casual, asked how we were doing, checked Lilia's chart. So I thought she was just at the hospital late checking on antoehr patient or whatever and decided to pop in.
Then ever so causaully she says..so we have accepted a heart for Lilia. I was in shock and didnt believe her at first..January 13th at 6 am lilia went for surgery. It was long and wasnt easy, we feared that she would come back on ECMO (prior to her there was a baby in her room who after a transplant came back on ecmo..and didn't make it) lukily she came back without that dreaded machine. Still the special vent and her chest opened, but we could live with that.
End of january, after having her chest opened for over a month they finally closed it succesfully. Now it was a waiting came to see when she could breathe on her own again.
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