It's in God's Hands

Here is the complete rundown from yesterday morning.

Jessica called me yesterday morning about 10:30 and told me they were scheduling a special meeting at 1:00 ET to discuss a plan for Rebecca since they have had her for a week and there has been no improvement. She called me after the meeting about 2:15 ET and we talked with the doctor on speakerphone. She explained to us that all of the team in the meeting was in agreement that they needed to do her procedure sooner than later. Although it was very risky, they thought it was more risk to do nothing. Looking at the schedule for the surgeons and team, they would need to do it that afternoon or it wouldn't be until after the weekend and they didn't know if she would make it that long. We agreed to go ahead with that plan. I was at work at the time so I immediately left and headed home to pack. On the way, I called a friend of mine with connections to pilots and airplanes. I don't know if they would want me posting their information so I will just say thank you to the owner of this plane and the pilot that flew me there. By the time we left, flew 1 hour and got a ride from another special person from the airport to Children's, it was about 2 1/2 hours. Again, not much time savings but it meant the difference in getting to see Rebecca before she went to the OR. Also, I missed any potential traffic issue and the temptation to drive 100 mph. So I got to her room literally just in time to say a quick prayer and kiss her goodbye. The nurse actually got smart with the doctor because he didn't want to wait just a few more minutes for me to arrive. We went with her down the hall and told her we loved her again and she went in around 6:30. The next 2 hours we waited in a family lounge and talked with some other parents which helped keep our minds off of the time. They called us a couple of times with updates. They brought her back to her room around 9:30 to do a handoff to the nurses. This time we used to eat some lunch/dinner. The surgery went very well, they cut her chest open by about 1" to visualize the heart to place the catheter. They placed a 3mm catheter first followed by a 6mm one just to do it in 2 steps. Back in her room she was pretty stable the whole night only having to get blood a few times and some other fluids. I stayed the night here in the room with her while Jessica went to RMH to get some good rest. I got none.

This morning they started battling some low blood pressure and minor desats. We were told that now we just have to wait for her heart to get used to it's new plumbing. Part of her heart just below the valve they opened is thickened from the extra workload of pumping against a closed valve. This thickening is what is now limiting her flow from being excellent through her newly opened valve. It is much improved from zero flow but may not be adequate when they turn off the prostaglandins.

Jessica got here mid morning so I caught her up on everything. About 12:30 I decided to go to RMH to get a little nap. I wasn't there 10 minutes and she texted me that I needed to come back. She was having issues with her heart. I came right back to find that she had developed an intermittent rhythm where her right atrium and ventricle were contracting at the same time called JET. When this happens her blood pressure drops and she desaturates. She did this for a couple of hours until they decided to do something because it was getting worse. The first thing they did was to cool her by dropping the room temp and by putting a cooling blanket under her. Rather than wait they also gave her another medicine that the doctor said she has seen make kids go into cardiac arrest. The head cardiologist was sick but came in at the request of the attending doctor. They chose to give the medicine. It had no adverse effects but also didn't control the rhythm. At that point we didn't know if that was the last option or not. It almost seems like there is always another option. This time it was to stick something else in her. Oh yeah with the cooling blanket you get a constant rectal thermometer. So this time she was getting a pacing catheter placed in her nostril down through her esophagus which lies right beside her heart so they can control her rhythm manually. This went very smoothly just like a feeding tube. Then they set some numbers and made her heart pump beautifully. With this being controlled they decided to turn off her prostaglandins which she has been on since birth to keep her PDA valve open. Now that she has had her procedure she shouldn't need it open anymore. Here's where the problem is. When her PDA closes the new opening may not be big enough to get enough blood flow to the lungs. Then she may turn blue and downhill from there. The other potential problem is that they can only leave that pacing catheter in for a couple of days or it will damage the esophagus. They think her heart rhythm problem is a result of the surgeon going through her ventricle to place the catheter and it is irritated. If that's the case they think it should self correct soon.

So here is what has to happen for a good outcome. The PDA (ductus valve) will need to close as soon as possible but there is no definite time that will happen. Her heart rhythm will have to correct itself within a couple of days before they have to remove the catheter. And when the ductus closes she will have to have enough blood flow through her ballooned valve to her lungs to oxygenate her whole body. If not, her sats will be very low and she could turn blue. There are some options to those scenarios but not good ones. Her kidneys and liver have suffered and are damaged but could be reversible if everything else starts working. She has had no urine output since before her surgery but the dialysis has been working well today.

She is in a very vulnerable state but the doctor still has hope and is clear to point out she may not make it. We're getting used to hearing that though. Very aware of her condition we place our trust in our Father and his plan. We don't know how much rougher this road will get before we reach our destination but we're holding on tight. Many of you have prayed the same prayer tirelessly over and over. God has listened and answered so far, why would he stop now?