Near the Crossroad

I want to warn you, trying to recap today and make sense of it is not easy to do. Things may have not came out in order so bear with me.
Jessica allowed me to sleep in a little this morning to catch up from my sleepless night the night before. When we left Rebecca last night her sats were in the 90's. When Jessica arrived this morning they were in the 80's. An echo was done and it showed that the ductus had begun closing, which was what we wanted to happen. She was adapting to this very well with good saturations in the 80's. So, the first of 3 problems seems to be working well. She drained nothing during the day because something was wrong with the dialysis catheter. The people from nephrology came to work on it but couldn't get anything to drain, only to go in. This obviously wasn't good. It kind of got put off the rest of the day for a couple of reasons. One reason was Dr. Nelson wanted to get a CT scan of her brain to see if there was any bleeding or damage. He said this may be helpful in making decisions on how much more to help her. What he was saying was if she showed bleeding or signs of damage we may not want to do much else to intervene and start letting her go. The CT scan was ordered around 1:00 and they brought a mobile one to her bedside in less than 20 minutes. The scan took only a couple of minutes but we waited until around 5:00 to find out that she had nothing concerning going on with her brain. This left several options open for treating her,,,, we thought. After these results he was able to talk to the surgeon to get his opinion on placing pacing wires on her heart. The surgeon told Dr. Nelson that she couldn't handle this procedure. They would go back into her incision in her chest to do it but the problem is when he was stitching her heart together after her last procedure the sutures basically exploded back open because her tissue was so weak. They described it as like a kleenex. He had to put a ton of sutures in to get it to hold together. So, he was not comfortable in doing another procedure to place pacing probes. They decided to put her on yet another medication that is sometimes helpful in correcting the rhythm problem. They were going to do this along with continuing the esophagus pacing for 12 hours. The other reason her dialysis got put off was because Dr. Nelson was hoping the surgeon could work on it when he was finished with his other surgeries but he was too exhausted. He agreed to do it first thing in the morning.

At 7:00, several people had converged outside of Rebecca's room. There were liver and kidney people plus all of the doctors and a surgeon from cardiology. The liver doctors came in and explained to me that her liver was critically ill based on numbers from blood tests. There is nothing they can do to make it better it is all dependent on the rest of her getting better. Then Rebecca's nurse told me the doctors would like Jessica to come back (she was at UC with my parents and sister seeing Joanna) to meet about a plan. We both just thought this was to tell us they were going to fix the dialysis tube and get her to surgery to place pacing probes directly on her heart through her incision (we hadn't found out this wasn't an option yet). We quickly found out this was not the topic of discussion. The head of cardiology, attending cardiologist and since it was shift change, both day and night nurses were in this meeting with us. He explained to us that they were really to the end of what options they had for her. He thought they could still possibly do something to correct the dialysis catheter to get some fluid off. He also wanted to get our feelings on when was too much as far as medicating her to maintain blood pressures and such. He told us most of the team was questioning when we were going to stop and that enough was enough. He said he and the attending both were kind of the outcasts and have a little hope left and were willing to keep trying the limited options that were left.

I asked why this certain surgeon was the one that had to do this catheter in the morning. Wasn't there another doctor that could just move this one a little to see if it corrected the drain problem. That is all that happened last time is they twisted it a little and pulled it back and it started working. Dr. Nelson said yeah ok we can check if there is a general surgeon that can do that. Apparently there wasn't, so at 8:00 Dr. Nelson decided to try to correct the catheter himself. He put a wire in the original one and removed the tube, then fed a new tube back in over the wire. They were able to put fluid in and take back out easily. We thought this was the solution but nephrology came to hook her up to dialysis and the fluid wouldn't feed in or out by gravity but worked fine by syringe. They decided to just put it on drain overnight and let out whatever wanted to drain by gravity.

Around 10:00 I decided I was going to see Joanna for a little while since it was her birthday - Happy 2 Months. Jessica decided to go with me then I dropped her off back here at Children's while I went to RMH to get us a few things to stay the night with Rebecca. We got a sleep room with an actual bed just down the hall that one of us or maybe alternating will stay in. When we got back from UC they had decided to manually do the dialysis with syringe instead of just doing nothing overnight. So, every hour or so they will put 20cc in the catheter then let it set before pulling it back off with additional cc's. So far they are getting more off than they are putting in. This is great but it's a big mountain to climb, hopefully it will get us until the surgeon can place a larger tube in a few hours.