Friday, April 13, 2012


Wednesday was surgery day. Since C was admitted to the hospital after the cath and we left in all the important lines from the cath so there was no real prep to do for surgery. Kevin stayed the night with C in the hospital so I did get some decent sleep which now I realize was the best thing for me. I got back to the hospital at 6:30am and C was wheeled back to the OR holding at 7:30am. We did the usual meet and greet with anesthesiology, or nurses and surgeon. C seemed fine, seemed to be doing okay from the cath the day before.  We gave  her hugs and kisses and said our byes for now. I know I was nervous but nothing different than the other times. We had been reassured by all the doctors and surgeon that she could handle surgery the day after the cath.

Surgery was fine.  She did great during surgery. The surgeon was able to hook the ivc to the Gortex shunt and get the conduit in the right place.  Due to her unique anatomy the surgeon ended up having to stop her heart for the procedure which he usually does not need to do for the Fontan but in her case he felt it was the safer way to go.  She did fine going on and coming off bypass.  The surgeon said the only little glitch was she was in a junctional rhythm coming out of surgery so they were pacing her heart a little.  We were relieved as all seemed to be going well.  After the surgeon spoke with us, he said it would be about an hour and a half before we would be able to see her in her room after recovery and settling in period in her room.

Well, an hour and a half passes and no word from the nurse. Not long after that the nurse manager comes out and lets us know C is back but she is having some difficulty and is taking longer to wake up and breathe on her own after being extubated. But, she is fine.

Okkkkkayyyyy....starting to freak out a little.

A little later C's nurse for the day came out to talk to us.  We know her and she knows us from our last two stays so we are super comfortable with her.  Anyway, she comes out and lets us know C is stuggling, they are working with her and she will let us see her just as soon as possible. Wait a little more and the nurse manager comes out again. By now I am wreck thinking C is dying back here and I canot get to her. Right as I am about to go busting down the doors to see her, our nurse sends another nurse out to come get us so we can see her.

I swear it was like watching an episode of ER but oddly without all the noise.  People were everywhere, each doing something to C.  We got to speak with her briefly and give her kisses then we stood right outside her room for probably another hour at least, watching while they continued to work to stabilize her.  I cannot even express how grateful we are to have such a skilled and dedicated team working on C.  They saved her life.  I know they did.

Here's the key....C has been and continues to be a very sick little girl post-Fontan.  We found out she rocked the actual surgery but soon after leaving the OR she crahsed fast. She was bleeding heavily, had gone into atrial tachycardia, her blood pressure was bottoming out, she would not wake up enough to breath on her own.  They started working on her immediately in the recovery room, all the way down the hallways to the cardiac icu and continued in her room.  She was receiving blood, blood products like red cells, platelets and all kinds of minerals. She was dumping stuff so fast, the nurses were really hopping with replacing what she was loosing as fast as they could. Everyone was finally able to get her stabilized and slowly people started leaving the room. When it was just down to C's main nurse left, she let me come in and be with C. I do not think I have been so scared and so helpless in my whole life. I realize now what I thought had been the worst part of this journey, C going into arrhythmia two years ago, was nothing compared to this. Everything after surgery was such a balancing act, getting C to wake up enough to breath but too much to fight. Getting meds in to break the tachycardia but not too much to lower her blood pressure anymore. Giving epinephrine to raise her blood pressure but not so much to raise it too high. Trying to figure out why her oxygen saturation was remaining so low after the surgery, when she should have sats in the 90's but hers were consistently hanging in the 60's. Totally terrifying knowing that things are wrong but not knowing what it is that is wrong. The intensivist had to insert another chest tube for her left lung, making that two tubes, because she had so much blood/fluid that her lung was super compressed.

Everyone came back to check on her, including her surgeon, who I was afraid was going to take her back to the OR to open her up again.

So after all the drama of surgery day, we were really praying for a restful night and good day one post-op. C did ok through the night, enough so I was able to go to the hotel and get some sleep while Kevin stayed with C again overnight.

Ummmm, yeah, what do they say about plans?

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