+ 0 - 0 | § ¶A great night for Alex...
Alex was doing very well yesterday. His suctioning tube was working better than usual, so he wasn't having too much trouble with his secretions. He was a very well-behaved little boy for Grandma and Grandpa Coy. As a result, we got some more really cute pictues to show...
(more)+ 0 - 0 | § ¶Finally, a little news!
Three things happened today. First, Alex had his g-tube replaced with what they call a "button." This way, he won't have a tube hanging from him all of the time when he goes to non-continuous feeding. Second, he had his first "gap-o-gram". Yes, the doctors actually use that term. A "gap-o-gram" is where they put tubes in Alex's pouch and in his stomach, then take real-time x-rays to see how far the ends of his esophagus are from each other. When Alex was born, they told us that, because of the type of the esophagus defect he has (pure atresia), his gap would probably be long, or about 5 cm. Today, they measured the gap to be around 1 to 1 1/2 cm, or one vertebral space. To us, this sounds like really good news. The surgeon said that this is a manageable gap, and will repeat the gap-o-gram in another 2-3 weeks. The third thing is that they are going to start stretching the top end of his esophagus to try to help get the ends closer together. They'll do this at his bedside daily. Apparently, he doesn't like it much, but it might help him get to his surgery faster.
So, our little boy had a busy day today. We got there just after they did all of that stuff, and he was out cold, trying to sleep after his rough day. What a good little baby!
+ 0 - 0 | § ¶Technical update
It appears as if the old website is no longer forwarding people here automatically. This probably isn't a problem for most people, as I made the announcement a while back. As I am not entirely sure of who has been coming and going, I can't make sure that everyone knows about the new web address that we have been using for the last month and a half. If everyone could do me a favor, if you sent anyone the link to the old address, if you could send them a link to the new address,
http://www.thenortonzoo.com/blog
that would be much appreciated. Thanks!
+ 0 - 0 | § ¶Watching and waiting and watching and waiting and ....
I talked to the pediactric surgeon today. He said that they were going to try to do the test tomorrow where they figure out how far the ends of Alex's esophagus are from each other. Of course, this depends on three different, busy people getting a windo of time together. He did say, though, that if they couldn't do it tomorrow, that they would do it on Friday.
They've also increased Alex's feeds. He apparently hasn't gained weight very well (he's been losing lately), and they are concerned that his heart condition is causing his body to burn so many extra calories that his body doesn't have enough left over to grow. So, they use supplements to increase the caloric value of the milk that he's getting. Alex has his own dietician at 30 days old! Just another watch and wait situation at this point...
As for the big man himself, he's doing okay today. He still has problems with saliva, but it's nothing new. He's just hanging out and looking cute (as if he had a choice on either one)!
+ 0 - 0 | § ¶Unclogged Tube = Happier Little Boy
As we've been writing, the weekend wasn't so great for Alex. He was having a lot of problems with his secretions and the drainage tube wasn't doing a very good job of clearing them for him. Today, the nurse was finally able to clear out the tube, and we had a much happier son. He got a bath, and some clean clothes, then spent more than an hour being awake and happy for us. It's nice to have days like these.
In other news, we spoke to one of the docs today. Alex had a renal ultrasound today to check to make sure that his kidneys were structurally normal; and they were. Apparently, they were supposed to do this ultrasound a while back, but never did. The docs are checking to make sure that Alex doesn't have any other problems that are typically associated with the ones he does have. Technically, he has what is referred to as VACTERL syndrome. VACTERL is an acronym that stands for various systems that tend to have issues that occur together. Alex has the C (cardiac) and the TE (tracheoesophageal) parts. Anyway, he doesn't seem to have any of the other problems.
They also said that they are going to change Alex's g-tube into a button this week sometime. That is when they place a plastic piece where his g-tube is...this plastic piece has a lid that snaps off so that you can attach a tube when needed for feeding. It's a really nice thing because he wouldn't have the tube hanging from him all the time. We thought that he had to be much bigger to get a button, but apparently his g-tube site healed really well, and they are ready to replace it. Another thing that they are planning to do this week is an x-ray of his esophagus to see how far the ends are from each other. They know where the pouch ends at the top end, but so far haven't found out where the top of the stomach is. This will hopefully give us an idea of when his corrective surgery will be.
I think that's all for now. Even though Dan and I are happy that Alex is stable, it will also be nice to start getting a plan in place to get his esophagus surgery completed. Wish him luck in his tests this week!