The Toughest Decisions

I know it has been some time since I have updated here. Jessica and I have been through the most difficult time of all of this the last couple of days. We have known for a few days that things didn't look good but we were reluctant to accept that it was the end. In the early morning Monday we got a phone call from Children's. As I have said many times before, not good. This time it was just to tell us that a nurse had stuck herself with a safety pin that was used to hold a tube in place and since it was in close proximity to the patient they had to get our consent to test Rebecca for HIV. Deep sigh of relief and go back to sleep. Later in the morning we were just getting up and the room phone at RMH rang. It was her nurse telling us that they were starting her on an insulin drip because her glucose was over 600. We still had pretty optimistic thoughts, we've heard worse news than that before. That was until yesterday around noon. I came to Rebecca's room first thing and Jessica went to Joanna's because we knew she was supposed to be start breastfeeding. The whole time she wasn't here with me I was uncomfortable and eager for her to get here. Rebecca's blood pressure was very low and her O2 sats were pretty low also. Around noon she left UC and came here to Children's. I was filling her in on what was going on and it all kind of unfolded from there. They had just done a blood gas and the nurse came back and said it was very ugly. The blood gas tells several things, Carbon Dioxide, Oxygen, PH and lactate. Her Carbon Dioxide was 90 which wasn't the worse because she was 130 in the RCNIC before they put her on the oscillator. The most shocking number was the lactate which is overall indicator of how her body is doing. She has recently been in the 3-5 range and this time it was around 11. We were told this was an indication that things were probably deteriorating faster than we could compensate for. Again, we go to our consult room with our nurse and the attending doctor. Were given the options and probable outcomes. At that point we decided to leave things as they were but not take anything away from her. This was the toughest decision so far we have had to make. We went back to her room and decided we were going to hold her. I held her first since mommy did yesterday. As we held her throughout the afternoon, we watched her heart rate fall into the 70's. Oddly, we watched some other things also. Her O2 sats went up to the 80's and 90's and her blood pressure increase. The natural reaction was to think she was doing better. When we asked the doctors about it they rationalized it as the body compensating and reacting to the change and just part of the process. We still were uneasy with our decision. We talked with Dr. Nelson the head of cardiology about what we were seeing and the process that parents go through in letting go. He reassured us that if it was his child he would do the same thing and that there were worse things than dying. We talked about faith and God and found out he is a believer and has prayed for Rebecca. I asked how a doctor can separate their medical expertise and faith, where they draw the line. He said he believes in miracles and has seen miracles, but he thought if God was going to work a miracle in Rebecca he would have done it before now. He also reassured us that if we wanted to change our mind they would completely support us. Jessica and I struggled with this and prayed for a sign one way or the other. We prayed for an undeniable sign that would leave us no question. Last night we got an adult bed in her room and moved her to it and took turns sleeping with her. Through the night she continued to be stable with her low heart rate and good blood pressure and O2 sats. At 10:00 last night they did another blood gas and it was around 4. According to our nurse, this is unheard of. She has never seen a kid with a lactate over 8 ever come back, especially on their own with no intervention. Throughout the day today she has been in the 5-6 range and her other levels have been manageable. After the blood gas we got last night we decided that was our sign, so this morning we talked to the doctor and told her we wanted to get her dialysis going and we wanted an echo. We wanted to know if her heart has worsened, gotten better or was unchanged. She, like the doctor yesterday downplayed another echo as if it would be uncomfortable for her and they wouldn't do anything with the information. They agreed to get dialysis going again and had this working by early afternoon. They also showed up this afternoon to do an echo to our surprise. We just got the results from that and it showed the thickening was unchanged but the squeeze function of the heart was less, which is not good. Our doctor that we really like just came on tonight until morning. He is the one that was here when she came to this unit 3 weeks ago tonight. We have had to make the toughest decisions we will probably ever have to make and most likely will have to make more. We ask for God's guidance in those decisions that they will be the right ones.