Monday, January 11, 2010

Merry Christmas and Happy New Year!

Well, we've been home for about three months now, and I wanted to update everyone on how Luke is doing.
We had a fabulous first Christmas as a family. David's parents came down to visit for a few days just before Christmas, and my parents came for New Year's. That meant that we got to spend Christmas with just the three of us together. We even got out the video camera for the first time to document it. It was so nice to have just the three of us celebrating each other and celebrating Christ's birth. This has truly been a blessed year, but not without sacrifice. The difficulties we've been through have made it that much more special and sweet.
So, how's Luke doing?
First of all, he's growing like crazy. The pulmonologist weighed him in yesterday at 16 pounds, 7 ounces. You can see in our picture how chubby his cheeks and arms are getting! One of the great blessings of Luke having a trach is that he also got a semi-permanent feeding tube called a G-button. Luke gets almost all of his nourishment through that tube, instead of relying upon his skill at eating by mouth to get calories. I'm told, that when I was an infant with heart problems, I had terrible trouble eating and gaining weight. Most babies with heart issues are also small and sickly because they expend more calories eating than they gain, making it very difficult to reach a healthy weight. While Luke is still low on the growth charts, he is gaining on them, making life easier for everybody. He mostly is in 6-9 month clothes (though he has short legs like his momma). We are making progress on feeding Luke regularly too. We gave up on trying to get him to take a bottle. He just flat refuses. Instead we moved on to feeding him solids. He's doing relatively well with this. Each bite of delectable fruits or vegetables has to be chased with sucking on a pacifier, but he eats a jar a day. His favorites seem to be bananas and peas. He won't have anything to do with prunes.
Developmentally, he's still behind. At eight months, he rolls over seldom, almost never all the way onto his tummy (he HATES tummy time!). He can sit up for a few minutes with us only holding his hands for support. We are having trouble getting him to put any pressure on his feet when holding him in a standing position.
Pre-game for round two starts on Monday. At our last visit to the cardiologist just before Christmas, Dr. Kao confirmed that Luke is indeed beginning to outgrow his shunt that they placed in his first heart surgery. His oxygen saturation numbers are gradually trending downwards as expected. Unfortunately, his pulmonary arteries are still quite small, so small in fact, that they might have trouble doing the planned next step of the surgery. Let me explain it the way that I understand it: all of the blood vessels from the upper half of our body flow into one vein called the Superior Vena Cava (the vessels from the lower half of the body go into the Inferior Vena Cava). Normally the Superior Vena Cava then takes the blood into the heart through the Right Atrium, then the Right Ventricle, then to the lungs via the Pulmonary Arteries. (Then from the lungs, back to the Left Atrium, then the Left Ventricle, then out to the body to circulate again). The hope is that during this next surgery, called the Glenn procedure, Dr. Mendeloff will disconnect the Superior Vena Cava from Luke's heart and reconnect it to the pulmonary arteries to take blood directly to the lungs without having to go through the broken right side of Luke's heart. That's somewhat tough to do with small pulmonary arteries (to my understanding). So the measurements that they take on Monday during Luke's next heart cathertization are going to determine if the Glenn is feasible. If it's not, there is still the problem that Luke is outgrowing his shunt, so something must be done. Dr. Kao says that it's possible we may just have to replace the shunt he has with a bigger one, to buy him more time and hope that his pulmonary arteries grow to allow them to do the Glenn. This is essentially step one again--we won't be gaining anything by replacing the shut (except buying more time), so Luke will still have two more heart surgeries to go. Of course the fear is that if his arteries haven't grown yet, they might not ever. We don't know what happens if his arteries don't grow. I think Dr. Kao's philosophy is that we'll cross that bridge if we get there. Right now, surgery (of some kind) is scheduled for February 4. We are told recovery time should be about 1 week. I admit I'm very fearful about this time frame. They also told us before Luke's first heart surgery that his recovery should take between 1 and 2 weeks. We we're in the hospital a total of 20 weeks because of all the complications post surgery.
Meanwhile, Luke has been sleeping A LOT lately. What happens when kids grow? They sleep a lot. Our hope is that God is answering our prayers for bigger arteries at this moment, causing Luke to need more sleep because of this growth spurt. We won't know until Monday after Luke's heart cath, but we hope everyone will pray that Luke's arteries will be big enough for them to proceed with the Glenn.
We visited with Luke's pulmonologist (lung doc), Dr. Copenhaver yesterday. Luke is doing fantastic in this area. Since mid-December, Luke has only required a ventilator for 8 hours while he is asleep at night. Which means for 16 hours a day, we don't have to worry about being connected to a vent. When Luke's in his bed, he still is connected to a big tube which delivers humidification and oxygen (when needed) to his trach. We're still getting used to getting Luke around the house. It takes a lot of effort to haul Baby, portable suction, pulse oxcimeter (monitors heart rate and o2 saturation), and o2 tank (PLUS a swing and a few of Luke's toys) into the living room, but we're getting the hang of it. It helps to have a nurse around most of the time, but times we have just to ourselves is really nice too.
Luke's pulmonologist has also explained to us our road map for getting Luke to breathe like a normal kid. Our first step is to have Luke on the ventilator for only 8 hours at night. Check. We have to wait until after Luke recovers from heart surgery to do the next step. We will return to Our Children's House (goody) for a three day stay where Luke will have a trial off the vent around the clock. They'll do a blood gas test every morning. If everything looks okay, we get to leave the vent behind. The next step is to use a speaking valve (also called a passy-muir) on the end of Luke's trach. This valve allows Luke to breathe in through his trach, but not to breathe out. This forces him to breathe out through his nose and mouth, forcing air over his vocal chords, thus allowing us to hear his voice. We've already done very brief trials with the speaking valve (1 minute or less). Luke really is having a tough time with it at this point. Dr. Copenhaver said that it could be that he's not quite ready for this step yet--it will go a lot more smoothly when he's ready. After Luke is able to use the speaking valve around the clock with no problems, then they will cap the trach. At that point he'll be breathing in and out through his nose and mouth and not using the trach at all. When he masters that, then it will be time to remove the trach (also called decanulation).
It's easy to get really excited at the thought of Luke getting decanulated. It means we'll finally have a chance at starting a relatively normal life with Luke. It'll mean we won't have to hire a nurse to babysit if we want to go out to dinner. It means we can take Luke swimming, leave one less diaper bag (full of emergency trach supplies) and the suction machine at home, and it means we won't have to torture him anymore doing trach care after his bath. It'll be a good day. Today though, we're focused on getting Luke through this next heart cath, then spending as much quality time with him before this next surgery. We're scared. We're dreading it in a lot of ways. Sometimes I think I'm so worn out that there's no way I can dredge up the energy to face another day (let alone weeks or more) at the hospital. But God was faithful before. He'll be faithful again. He loves Luke even more than we do, and we have to trust him.
I'll post another note letting everybody know the results of Luke's heart cath. Thank you for your prayers for these upcoming procedures. We love you.
Rachael & David

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