A few positives

We have some things to be happy about today so I am going to go ahead and blog about it. Jessica and I both stayed here with Rebecca last night as we will tonight. Jessica in a room down the hall in a bed and me in Rebecca's room on a chair. It was another night of little sleep, not because anything was necessarily wrong but just the anxiety and fear to go to sleep. We were both up around 5:00 because we thought the plan from the night before was to run the medication for 12 hours and pace along with it then we would have to come up with a new plan. Nothing really happened in the morning. The doctors would come in and look at her but never seemed worried about the pacemaker or her medication. They rounded on her later in the morning and went through everything because there was a new fellow coming on shift. The surgeon was at rounds but it was decided since they were able to take fluid off by syringe successfully all night they would not put another dialysis catheter in. They were going to try to hook her back up to the automatic fill/drain method instead of using syringes which is a huge infection risk because the have to break into the line every time to fill and then drain every hour. This time the attending from nephrology was at rounds I think because there has been some frustrations with the clowns they have been sending down. By late morning they had not shown up to hook their lines back up so expressed my concerns over the last few days where we just keep waiting on nephrology to show up. Our nurse also made a phone call and the fellow from the night before came down again but this time with the attending doctor. This time they got it all hooked up and it filled successfully and then drained successfully. So, after the syringe method all night and morning then the correct way this afternoon she  has still taken in more fluid than gotten rid of but tons better than getting nothing off. I think she is +55ml at this point today and yesterday she was nearly 200+. She is taking in 10ml per hour of fluids and meds and giving off about the same now finally. The hope is to start increasing the amount they fill with, therefore increasing the amount they are able to collect and drain. We would like to be even today or possibly tomorrow then start being negative.

Around noon we were tired of wondering so we asked the fellow and attending doctors what the "plan" was. We thought they were going to stop the medicine if they didn't see any signs of improvement and we knew the risk of prolonged pacemaker use. They said they talked to Dr. Nelson and he said they could go up from 10 to 20 on the medication for 12 hours and see what happened. If still no change they could go to 30 which would be at midnight. If no change after 12 hours of that dosage they would stop it. With the increased dosage there was increased risk of other arrhythmias or even cardiac arrest. This is another one of those moments you don't know the answer you just go with your gut. We decided to increase to 20 and see. Since she had shown some positive signs like urinating and getting some fluid off we knew we had to keep trying. The pacemaker was likely already doing damage but just a few more hours may be all she needs.

Early this afternoon they did a quick echocardiogram to check and see if the ductus had closed any more. It was about the same as Thursday. At 2:30 I stepped out for lunch just as the new fellow showed up to re-tape her pacing lead that is in her nose. Before I left I asked him how often they were going to turn off the pacemaker to check her actual rhythm. He said maybe every 8 hours. I responded abruptly with, "what". He said then said they could do more often and it wouldn't hurt, which I already knew. I asked him to do it now. If her heart could sustain a comfortable rate and blood pressure, even if the rhythm wasn't 100% sinus (correct) it would be better than having the probes doing more damage to her esophagus. We were told this morning again that this type of pacing hasn't really been used for prolonged (>24 hours) so they don't have data on when the damage begins and how bad it gets. We just know she couldn't survive without it. When I got back from lunch they were still messing with the pacing lead in her nose. It got out of place and they couldn't get it to "capture". I don't know what that means but it wasn't pacing correctly. I just sort of convinced him to turn it off and see what she would do. Now, 5 1/2 hours later she is still off of the pacemaker. She's hovering at the minimum acceptable blood pressure and heart rate of 100, but is managing ok. They could have to turn it back on, but any break from it is that much less damage it is doing.

As I was eating lunch in the family room I sat near another family that was arranging a chaplain to administer last rights to their child. I don't know the circumstances or what medical challenges they face, but all I could think is that their baby was still alive, why were they thinking about last rights? There is time for that if and when they pass. We have discussed absolutely zero plans about if Rebecca wouldn't make it because that is not our focus. There may be a time for that but it is not now. Jessica and her mom are now over visiting with Joanna. Poor girl is getting neglected the last few days/weeks. We hope if she notices that she understands her sister needs us right now. We love "Our God" and that has become our song in these days. It is Chris Tomlin's newest song. There have been 3 times it has come on the radio here in Rebecca's room that have been at just the right moment.