Luke is Six Weeks Old!

We've made it six weeks. We've had some adventures with heart rate this week.
It was about Wednesday or Thrusday, I don't remember exactly (all the days run together!) when Luke's heart rate went suddenly from the 130s to the 170s. The change took place in less than a minute, and we are both glad that David was standing close by with his eyes on the monitors and noticed this change. After a lot of humming and hawing, the doctors, including his cardiologist, Dr. Kao, decided to put him on a drug called amioderone. She told us that Amioderone is a slow acting drug and would take at least 4 hours to start working. We had to leave then for shift change, and when we came back, the night Doc, Dr. Stromberg had taken him off the drug because he thought it was causing Luke's heart to "drop" or "skip" beats and jump all over-- one moment in the 170s, then next in the 110s, the next somewhere in the 130's, etc.
The next morning Dr. Kao and the day doctor, Dr. Meyer, did some experiments with a different drug and his pacemaker and ruled out a certain type of arrhythmia. They have been talking to a specialist from Austin who is a heart rate specialist named Dr. Fenrich. Dr. Fenrich has seen all of Luke's EKGs from this week. Over the past week the doctors have been trying a few different drugs and different things. The problem with the drugs they have been using have been that they will slow his heart rate down, but then his heart rate will begin to drop beats or jump all around, and his blood pressure will also drop, which is bad for his whole system.
As we left yesterday evening, we were distraught because we felt that his doctors have basically hit a wall. The treatments they have been using haven't been very effective. They had warned us that while his fast heart rate is not putting him in immediate danger (as long as his heart rate is steady, the rest of his system is working well, though fast), they aren't sure how long Luke's heart can beat that fast before tiring out. So the doctors had no solution to offer us yesterday to slow his heart rate down and keep it regular. We didn't know if we were facing Luke going into arrest again, or heart failure, or what. With no answers, we were pretty distraught.
This morning I walked into his room and nearly panicked to see four nurses, an EKG tech, and Dr. Stromberg standing around Luke's bed. It turned out that Luke's atrial heart rate (the beat rate for the top half of Luke's heart) went to about 240. Dr. Stromberg explained to me that only about 2/3 of these beats were "getting through" to the bottom half of his heart, so his true HR was only about 170. Still fast, but that helped me not to panic. Basically the top half of his heart was not talking to the bottom half, his blood pressure was dropping, and it was overall not good for his system. Dr. S used Luke's pacemaker to outpace his heart and basically hit the reset button on the node that was sending the bad impulses to shoot his heart rate up. Dr. S was able to use the pacemaker to get Luke's heart on a regular rhythm and get both halves of t he heart to communicate well together again. Luke's heart settled into a regular "sinus" rhythm of 190's. He explained to me that this type of thing is common in babies who have had Luke's surgery. Since they reduced the size of his atrium during surgery, he has some scar tissue on his right atrium. Basically one of the nodes that send electrical signals to the bottom half of the heart is right next to some scar tissue. The node would send an impulse, but the signal would go round and round the scar tissue and work itself up into a very fast rhythm. Kind of like a broken record or a skipping CD. I know that's really confusing, and I'm not sure that I understand it well. The good thing is that Dr. Stromberg understands what is going on, and has a plan to fix it.
After talking with Dr. Fenrich, Dr. Stromberg decided that Amioderone is again the correct drug to give Luke. Dr. S explained to me that the Amioderone would keep the broken record thing from reoccuring. He said that in the process, it should slow Luke's heart rate down a little maybe 160s or 170s, though the full effects of the drug will not be seen for 2-3 days because it is so slow acting.
Dr. Fenrich will come on Thursday and visit Luke. In the meantime, we think they'll keep him on Amioderone. Dr. Stromberg says that Luke's heart rate being in the 190s is not concerning to him at all. He believes that the problem is temporary, "post-op", and that while we may need to have Luke on Amioderone for a few months after we take him home, he won't need it indefinitely. He believes that this problem with the arrhythmia will work itself out in a little while. This is a relief to hear, but David and I are still nervous about the problem until we can see the effects of the drug start working and we go a couple of days without any crazy episodes.
Meanwhile, they are getting more aggressive with Luke's dialasis to try and get more fluid/swelling/adema off of Luke's body. This will enable Luke's lungs to expand more, allowing him to breathe more effectively, and hopefully in a few days get him of the ventilator. His night doctor last night had his foley catheter (for his urine) reinserted to keep better track of his urine output. His kidneys continue to improve a little each day based on the chemistry levels shown by his blood work. We don't have an idea when they might take Luke off of dialysis. Luke's leg looks almost back to normal, which we are really happy about. We haven't had any more seizures or any other reason to worry abou this brain any further. Luke's gotten up to full feeds - he gets 18 mL of breatmilk every hour continuously. We've begun something called pressure support trials with his ventilator. This means that for one hour, every four hours, the ventilator stops giving Luke breaths. Luke initiates every breath on his own, and the ventilotr gives him a little extra volume of Oxygen and a little extra pressure. In doing this we are teaching Luke to breathe on his own. So far Luke has done very well with most of his pressure trials. We haven't done one this morning because of his heart rate episode, but I believe they'll resume this afternoon.
One final thing, since Luke's ventilator and feeding tubes are now through his nose, he has room in his mouth to take a pacifier. Yesterday Luke went to town on his passifier two seperate times for about an hour each time. David and I are encouraged, thinking that if he can suck for that long, he should be able to take a full feeding. If we can get his heart under control, maybe we won't be in NICU for too long teaching Luke how to eat.
I think that's all the news. Thanks for bearing with me through all of this confusing information.
Thank you for your continued prayers. Please pray for Luke's arrhythmia to work itself out with the help of this medication. Please pray that the doctors gain full understanding and insight into this problem so they know the best way to treat it. Pray that we get to hold him soon.
We love you.
Blessings,
Rachael & David