Today Parker had a pretty all over the place day. They couldnt find a happy medium for him and his sats were too high then too low up and down all day long. I guess he knew the nurses were getting paid holiday pay and wanted them to work for it!
The big issue right now is his lungs they are retaining so much fluid because of his intact septum and they have to get them cleared up before they can even attempt surgery on his heart. The doctors yesterday took us into the consultation room and told us that things werent looking good. They said that from the looks of it he had some kind of pulmonary lung disease and would need a heart/lung transplant. The problem with that is the list is so long and he is so sick that he wouldnt make it waiting on the transplant. It was devastating. They told us they were going to try a few more things and give him a few days to see if things cleared up so they could do a cath on his lungs Monday to check his lungs.
They started him on some more diuretics to try to clear up some fluid from his body. He is now on Lasix, Diuril, and Aldactone. Hopefully it will help clear up his lungs so they can go ahead with the surgery. The cardiologist that listened to his lungs tonight said they sounded better and sounded like they were clearing up. I hope that is the case but we wont know until tomorrow morning after his chest xrays. I get so frustrated with all the doctors because it seems that every doctor is telling us something different. The 2 doctors yesterday that talked to us basically told us that there was no hope. Then we talked to the surgeon and he told us there was still some hope. The first cardiologist this morning told us his lungs still sounded bad then the one tonight told us they sounded good. I just wish we could sit down with all of these people at once so that we could get a straight answer!
This has been the hardest week of my life. I havent got to hold my baby, if you touch him too much he gets too excited and sets his machines off. He just lays there with his sad eyes open looking at us wondering why we dont pick him up and comfort him. And then there is his cry you can tell he is crying by the look on his face but you dont hear a sound. It is truly the saddest thing Ive ever seen.
I might add that nobody warned me about the great joys of pumping! I cant get anything done or do anything without having to schedule around pumping! My schedule goes a little something like this. Pump, pee, pump, brush my teeth, pump, eat, pump, pee, pump. Ok you get the picture. I dont know how a person can keep this up for that long its exhausting!
I have to get off here now so I can pump and then get to sleep just to wake up in a few hours and pump some more :) I hope that everyone had a Merry Christmas!
P.S. I had the pleasure of meeting Ruthie and her mom Laura at the hospital this morning! They came for a visit to tell everyone Merry Christmas! It is so nice getting to meet other heart moms! I also spoke with Kathy on the phone this evening. It was such a pleasure talking with you. Jake gives me so much hope for my sweet Parker. I hope that next year at this time I am helping another new heart mom through this journey just like all of you have helped me! It means the world!