Blood Pressure vs Fluid vs Sedation

I have decided that the pity party is over. This is not a fight we asked for but it is also not a fight we will ever stop fighting. Madden has shown us time and time again that he wants to be here, he wants this life and he will have it.

The last 24 hours have probably been the worse 24 hours in my life. There were points in this last 24 hours where I felt we might be near losing this fight. But Madden is not giving up. He is working so hard to get better, he is trying so so hard. I will never give up on him. I will stand beside him every step of the way.

On Saturday night Madden crashed. His blood pressure went down to 39,  his sats dropped and the pressures in his left and right atrium were in the 30s (they should be closer to 10 on a heart that has just had surgery, 3 - 4 is normal). He was all over the place. They increased all his support, did xrays and echos to see if anything had changed in his heart and were getting ready to open his chest back up to get some compression off of his heart. From about 7pm to midnight we had an average of 5 doctors nurses and surgeons in our room. He had 5 echos done by cardiologists through the course of the night. They thought they were going to have to open him up and try to find the problem to fix it since nothing else was working. They brought the crash cart to his room (defibulator included) and also brought all the surgical equipment incase his chest was going to have to be opened in am emergent situation. One of the surgeons came up and tried to manipulate his PD cathedar (which does dialysis) to see if they could get some fluid off. They managed to get it working when a huge clot came out of it. This was huge because when the fluid started to come off his numbers started to improve. Madden just has so much fluid in him that it is putting pressure on all his organs and all his veins etc. Making it very hard to circulate blood through his body. The fluid was trying to find anyway out of his body so started leaking out all his incisions on his belly and out his eyes and nose. The fluid is mixed with blood so this coming from his swollen shut and bruised eyes was very hard to see. One of the drs spent the entire night sitting at his bedside with us waiting to see what he was going to do next. Thank God for her. Finally around 5am Madden started to settle out. This night was by far the worst night of being in PICU. Nurses from the unit were coming up to me and just hugging me, comforting yet very uncomforting at the same time.

Madden has been struggling with keeping his blood pressure up so he is still on quite a bit of support. The problem is that he is very sensitive to the sedation that they are giving him and he drops his pressures with most sedatives which makes it very difficult to ween his support. When his pressures are low they give him fluid to help get them back up. Which in turn makes him more puffy and puts more pressure on his organs.

One of the cardiologists told me that he is behaving like kids from "back in the day after surgery" and that they were always very sick for about 3 weeks after surgery and lots of them didn't make it. He told me our job is to buy him time until his heart can heal and "remodel" itself which it what it needs to do now. Madden's heart is very thick and the left ventricle is very small. His heart is now functioning like a normal heart which Madden's heart and body are not used to. It is going to take time for his body to adjust and for his heart to remodel. There is also the uncertainty that Madden's heart will ever be able to function like a normal heart because his heart is very complex. The doctors in his unit have never seen his anatomy before. His little special heart is very different.

Rocky asked one of the doctors and one of the nurses how it is possible that the numbers from Madden's blood gases are still so good when so much else is going wrong. The answer - Madden is fighting, he is a fighter and he wants to be here. I am so proud of him. Every day I tell him over and over that I am so proud of him. That things are going to get better. That there is so much more to the world than this and I am going to show him it all. I tell him how much we all want him here and that there is so much love waiting for him outside the hospital walls. I ask him to keep fighting because I need him in my life. He is my baby.

There is a lot of worry and concern on the faces of the medical staff. I know they aren't sure how this is going to end. But I am sure. I know that  my baby will come home. This is where he belongs. This is where he wants to be.

Madden - I love you bigger than the sky. You are the strongest person I have ever met. You are a little star. You are my hero. xox