At 7am the O.R team came up to get Madden to take him down for his second open heart surgery. We were able to wak down with him to "the doors" and then kiss him goodbye. Here a few more promises were made to Madden and a few more "you can do this", "be strong" talks. After they took him away Rocky and I both stood there in each others arms and cried. Letting them take your baby might just be the hardest part.
For the next 6 hours we sat and waited for news on how the surgery went. This 6 hours feels like a lifetime. About 1/2 way through we got some news that the two large holes in the center of Madden's heart had been closed and they were moving on to fixing the valves and the ascending aorta. So far things were going well. A big sigh of relief. Around 12:30 the surgeon, Dr Rebekah came up and talked to us. He was happy with the way the surgery went and Madden was doing very well. A HUGE SIGH OF RELIEF. He also let us know that he closed Madden's chest cause he felt that the heart wouldn't be too compressed but would not hesitiate to go back in and open it up again if need be. Then told us that they were going to have to watch for bleeding as he had been on heparin prior to the surgery and also that because Madden's heart is thick from being overworked they were going to have to watch to see if the heart is going to be able to relax. Overall things went very well in during the surgery. A big win for Madden.
From the time Madden got back to his room he struggled to keep his blood pressure up. He was given lots of fluid and was on high medical support to help with this. He was also given quite a bit of blood to get his hemoglobin up and help with the fluid problems. I had a very hard time being in the room because of some of the complications he had after his last surgery so I spent most of the day and night coming in and out of the room or sitting outside the PICU doors texting Rocky to see how Madden was doing. Overnight and through the day today they were able to ween some of the blood pressure medication and get that to a better place. They had to give so much fluid yesterday and through the night that Madden is very swollen. This morning he started to bruise up really badly and now he is almost all black and blue. It is incredibly sad to look at. I just hope he doesn't feel inside how he looks on the outside.
They did an echo today to check the function of Madden's heart. They know his heart is thick and stiff (which could be a problem if it doesn't relax) but there are no obstructions and his valve is working very well right now. Vey good news!
As of right now Madden is on echmo alert. Which means if Madden needs it, they have everything ready to put him on a bypass machine. This is not something I want to have to happen and therefore until he is off echmo alert I won't feel like Madden is in a good place. Right now he is making small steps forward with the weening of the meds etc. However he is still in a very fragile place. If anything goes wrong, he will end up on the echmo machine. We need to keep making baby steps forward. To be honest I think the doctors were surprised that Madden came back from surgery not on the bypass machine so that is a big win for Madden.
Madden continues to prove he is a little fighter every minute of every day. I am so proud of him for everything he has fought through. He is my little warrior and I know he will fight until he gets home.
Madden I love you as big as the sky. xox
I started following your precious baby's story through a friend on FB and I wanted to say that my prayers are with all of you. I can relate to that eternal wait through surgery as I have been through the organ transplant of my husband. And all those hard days seem like the longest of you life, but just know that each days gets a little better with less and less tears. Eventually there is a light at the end of the tunnel. I can't wait to see pictures of you little one leaving the hospital!
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