Sign of the Times

Every time Benjamin has to go in for surgery or a bronchoscopy, we always have to starve him for several hours before he is put under anesthesia. Now that he's a bit older he's starting to learn how to put his sign language to good use. After an hour in the waiting room this morning, Ben had enough and began pulling out all the stops in order to get a little food. Since his signs were falling on the blind eyes of his parents, he began to work on the nurses in the room. By the time he had finished his routine of squeezing his fingers together and rubbing his chest to say "milk pleeeease" followed by his most pathetic frowny face and a few tears down the cheek, the nurses had melted into puddles on the floor. I'm pretty sure if Adrienne and I were not in the room, Ben would've had himself some milk and a steak dinner if he knew the sign for it.

Once they finally knocked Ben out, Dr. Digoy was able to see some good progress with Ben's vocal cords. One side of Ben's airway had opened up so well, that the doctor decided to use a laser to clear out the last little bit of tissue that was blocking that area. There's still a considerable blockage on the other side of Ben's airway around the vocal cords, but Dr. Digoy is now hopeful that this blockage may also recede like the other tissue did.

He told us that he did not feel comfortable doing the surgery that Ben was originally scheduled for because he had done several similar procedures on other kids in recent weeks and was not satisfied with the results. The surgery is pretty painful, and he didn't think it would open up Ben's airway wide enough for him to take out the trach. So we'll probably head down to OKC again in two or three weeks to see how Ben has progressed and figure out what's next.

Thank you all as always for your prayers and thoughtfulness,
Whit, Adrienne, and the Benjamite

I Hear You

This afternoon Adrienne received a phone call from Dr. Digoy out of the blue. He said that he's been having second thoughts about performing this surgery on Ben. Instead of going through with the procedure tomorrow, we're just going to take Ben down to OKC to let the doctor see how the healing of his airway is progressing. Wouldn't it be fantastic if the airway had opened up on its own? I'll let you know what the doctor says when we get back home tomorrow evening. It's nice when God gives us a gentle nudge when we're heading in the wrong direction.

Talk to Me

Sometimes I'm not exactly sure what I'm expecting from God when I pray. Some people say that God speaks to them or directly specifies which way they should go. Others say that God gives them a peace about the decision they're making. And others say that they pray for God simply to guide them through the wisdom and logic he has given to them.

This far on my journey in life, I've never had God speak to me directly (though I've had several instances where God has seemed to hit me over the head with a ton of bricks as I have read and been convicted by his Word.) And I guess there have been times, especially during Ben's first month in the hospital, that I felt God providing me with extra measure of his peace. For the most part though in my experience, God appears to act more subtly through a combination of different people and situations.

We have decided to go with the option to widen Ben's airway by grafting a piece of Ben's rib cartilage into the ring of cartilage around the voice box. The procedure will be done on Tuesday, April 29th and will take about 6 hours. They expect Ben to be in the hospital for about a week to make sure that the cartilage fuses properly and doesn't slip out of place. God hasn't told us to make this decision, and I don't really feel a peace about it either. Is it possible to say that you trust God will work things out even if you don't feel a peace about a decision you are asking him to help you with? Some might say that silence on God's part means that you should just wait for God to act and make things clear. I think Proverbs 20:24 sums it up pretty well, "A person’s steps are directed by the Lord. How then can anyone understand their own way?"

Well, that's enough of that for an evening. On with the Benjamin videos!

None of the Above

"The truth is, I don't know what to do." Generally, this is not the phrase you want to hear from someone who has dedicated his entire adult life to helping kids with medical conditions similar to the one your own child has. These, however, were the first words out of Dr. Digoy's mouth when he came to talk to us after he finished looking at Ben on Thursday.

Originally, the doctor thought that Ben's airway was being blocked further down past the vocal cords, but he was able to see things more clearly now that Ben has healed. Both vocal cords are there, but he found that the excess tissue that was enveloping one of the cords has deformed the cord and pushed it out of its usual position, which is why Ben's airway is still blocked. Dr. Digoy said that he had never seen such extensive tissue growth in any of his trach patients (I believe some sort of prize is in order).

After he explained all of this, he said that we have three main options:

1) Use a laser to cut out the deformed vocal cord and the tissue surrounding it so that Ben's airway is clear and the trach can be removed sooner. Ben should still be able to talk with only one cord, but his voice would always sound raspy. Removing the cord could make it more difficult to swallow since the vocal cords are involved in preventing food and liquid from going down into the airway.

2) Leave the excess tissue and the cord alone, and instead widen Ben's airway by adding some cartilage from Ben's rib to the ring of cartilage around the voice box. This would allow Ben to breathe better and preserve his non-functioning vocal cord, but it would not solve the problem of getting the excess tissue out, which could lead to problems later on. This option could also make it more difficult for Ben to swallow since his airway is basically being propped open.

3) Wait for a year and see how Ben develops. This prevents us from making anything worse than it is already, but one of the things Dr. Digoy told us the first time we met with him is that he likes to move aggressively whenever possible to get trachs out since the mortality rate is higher for kids with trachs.

With options like that, you can see why he said he didn't know what to do. He said he'd like us to think on this and pray about it for the next week or two before we talk with him again and make a decision on which way to go. Obviously, I'd prefer for him to take another look down there in a few weeks and see that everything has been healed completely, but barring that miracle, we really have no idea what is best. Hopefully, God will somehow make that clear very soon.

On a little less serious note, today Ben has finally ended his 14 month long protest against bipedalism. I'm guessing the straw that broke the camel's back was watching Olivia toddling around at her first birthday party this past week. It's just too dangerous to allow a girl who can already beat you up to have a mobility advantage on top of that.

Here's a quick video of Ben's first walking adventure. The production quality is even lower than my already low standards so you may want to watch with a barf bag close by if you've eaten recently and are prone to motion sickness. Enjoy.

Come Again

Just to let you know, I recently participated in an event that may possibly signal the beginning of the end. On the 15th of February, our friends Bobby and Melissa were blessed to bring Robert Michael Smith into the world. Melissa's baby shower, however, was scheduled for the 16th, but rather than reschedule, the show went on with Bobby opening presents and me writing down names and gifts. I'm sure this heinous act seriously violates the unwritten church of Christ shower protocol and even posting this photo may be an excommunicatable offense. But we are beyond the point of no return so here's a picture of two very confused guys lost in this big crazy world.


After Benjamin had his surgery back in December, we started noticing that when we fed him crackers we'd find a few crumbs in his trach. This went on for awhile and we finally decided to put some green food coloring in Ben's milk to see what the deal was. Unfortunately, after we gave him the milk, we found that the secretions that we were suctioning out of his airway were lime green.

The doctor said that Ben is still relearning how to swallow so bread crumbs and liquids tend to go down into his airway. This has forced us to take a step backward and start giving Ben most of his liquids through a stomach tube again. Yesterday at work I swallowed some water down the wrong pipe, and it made me think how annoying it must be for Ben to have that feeling every time he eats.

Ben's next surgery is scheduled for this Thursday. The doctor will be going down past the vocal cords and removing any excess tissue that's constricting Ben's airway. You all know what to do.

February wasn't much of a month for family videos so I leave you with one of Ben right before his birthday party. I take full genetic responsibility for the pot belly and chicken legs.