So not too much has changed since last...but I did get to talk with the doctor briefly last night about the results of the echo. Again... no significant change in funtion. He said although Yale is not "YET" officially going through the transplant work up, it is them who are taking care of his case, and there is going to be some major investigations into why Yale's sats are somewhat low, and yet its not related to his function. He said there are a multitude of possibilities and while they look for them, all the test will be what they use in determining his eligibility for transplant. So while were are here there will be CT scans, numerous echos, x-rays and possibly caths. This morning Dr R has decided to try weaning the milrinone to see if it is in deed necessary... funny how I non-chalantly mention that I think this whole thing is related to the mysterious cough and his not responding to the previous dose of diuretics. She said that certainly sounded reasonable, and so she is going to test my theory, if only to rule it out. I have to admit that the milrinone is working wonders for Yale. They took out his NG tube yesterday just to replace it....but another has yet to be put back in. He's bottling and taking meds like a champ!
Everyone has been trying to be reassuring that they have seen Yale battle back from worse, and it isn't unheard of for babies to grow and get better function. I am not going to hold my breath and I think we will most likely go ahead and list him whether its imperative or not. EFE is definitely playing a role in his funtion, and scar tissue doesn't grow, so Yale's function is unlikely to get better as he grows... even if he is a level 1...its better than not being listed right?
There are lost of familiar faces on the ward, and its great to see so many smiles... And Abby Knight is just the most smiley little girl... she's such a sweetie pie!
Please pray for all the families that have to go through such trying times. Its rough to see soooo many kids with heart problems.. its a wonder more isn't done to really figure out how and why these defects happen... Its a hard life to live... and I want to say thank you to the silent heroes that have been in these halls before us. If it wasn't for one family saying yes to an experimental surgery, Yale would not be with us today....