Monday, July 6, 2009

Luke is Eight Weeks Old!

I'm glad I waited until today to write this update, because it was going to be a pretty disappointing one. But now, I've got some happy news. You have to wait til the end to read it though, because we have to go chronologically.
This past week has been a pretty disappointing one. The only direction we seemed to be moving was backwards. I had a long conversation with the doctor about what has been going on with Luke's belly. I learned that Luke got something called necrotizing enterocolitis. Yeah, it sounds scary to me too. He explained to me that because of this infection, small parts of Luke's intestines died (yep, still sounds scary), and his intestines are also inflamed. Because of his cardiac arrest right after his surgery, Luke also got what's called an ileus. The nurse explained that his intestines stopped working because they didn't get adequate blood flow when he was in arrest, much like when your foot goes to sleep when you sit on it weird (this is what caused his kidneys to fail earlier, for some reason it was just very delayed). These two things in combination have caused his digestive system to stop working. I explained in the last note that they stopped feeding him, and he is getting all of his nutritional needs from IV fluid. The doctor told me that Luke can definitely recover from these conditions, but it will likely be a very slow process (we're no strangers to slow processes). It may be that when they start feeding him the middle of this week, that his intestines won't be ready to do the work yet and we'll have to stop feeds again. It may be a stop feeds, start feeds, repeat cycle for awhile, but eventually his intestines should "wake up" and do what they're supposed to do eventually. His belly right now is quite a bit less swollen than it was a week ago, but he's still got a potbelly full of air.
We haven't seen much progress in the way of his heart rate either. A few times this week, Luke's heart reverted back into that rhythm where he was dropping beats (the skipping CD thing again). Then the blood pressure gets out of whack and it's tough to break out of the rhythm. The last several days Luke has settled into a heart rate in the high 180s low 190s.
Luke also spent a lot of time sleeping during the day. After having him track with us so well, and be awake so much, it has been disappointing to just watch him sleep all day. This week though, he was awake one morning when I came into his room, and I don't think that I imagined it when he smiled at me when I started talking to him. I imagine it would take a lot for a kid who has gone through what Luke's gone through to smile, and it was just for me. It was magic.
We've had some trying times with one of Luke's night nurses, not caring for Luke the way we think he should be cared for. One night after we'd gone home for the day, Luke's PIC line (this is like an IV line that goes directly into his heart) came out. Not the most major of deals - not life threatening - but we had to give consent for them to put in the PIC line, his nurse should have notified us when it came out. We didn't find out about it until the middle of the next morning. I had a conversation with the charge nurse this morning, and Luke won't have that nurse any more.
So now for the good news. When I got to the hospital this morning, his day nurse (our favorite) announced that we are taking a "dialysis vacation". Luke hasn't gotten dialysis all day. He continues to pee more than sufficiently. If his numbers and chemical levels can stay where they want them, we'll be able to get off of dialysis forever and get one more piece of plastic out of his body.
Now that Luke's abdomen is not constantly filled with dialysis fluid, his lungs have more room to expand. Guess what? Those pressure support trials I told you about last week have started again, and Luke's done swimmingly on them today. The trials have been for two hours each time. He just finished his third one for the day, and he's doing great. We're trying not to set our hopes up too high - Luke has never gone on the docs' timetable since pregnancy - but we're hoping that he will get extabated the middle of this week. Luke's been intibated since he was 8 hours old, so this is a major mile stone. That day will probably be second best only to the day we go home.
The docs have taken him off of two of his heart medications in the last two days - the Esmolol and the Epinephrine. His only heart medication he's on now is the Amioderone. So far, Luke's been dealing with it pretty well. His heart rate is hanging out in the high 180s to low 190s. Blood pressure's good, as well as his other vitals.
So, I had some good news for you after all. :-D.
We're definitely not at the finish line yet. We're prepared to come in tomorrow and everything to have changed - such is the nature of this roller coaster ride called Ebstein's Anomaly. But it sure feels good to see a rainbow, even if we're in for more stormy weather.
Thank you for all your encouraging responses, and always, we're most grateful for your continual prayers. We love you.
Rachael & David


  1. Praying for more rainbows than storms. Just when you think you are at the end of your rope, God in His infinite timing, sends some encouraging, great news! Many, many continue to pray not only for Luke and his staff of caregivers but his Mommy and Daddy, grandparents, aunts and uncles who all just would love to "fix this" for you all. SA Prayer Warrior

  2. What wonderful news!!! God is faithful to hear your cries for help. I hope you can hang onto this good feeling when you do hit other storms. God has not forgotten you or Luke. He is holding you both in the palm of His hand.

  3. I'm praying for you and beautiful boy. Smiles from babies are like small miracles. They're wonderful.