Wednesday, May 5, 2010

Only One Tube Left!

Believe it or not, we’re down to one tube. That’s right; Carson has had all but one tube taken out of him. They took out his picc line today so that leaves him with his feeding tube. He’s been eating very well and he eats about one ounce per feeding. He has been having some trouble with reflux and Heather asked them to put him on Prevacid or Zantac. We’re hoping this helps because when he has reflux his oxygen sats drop very low. With no tubes, this means that he can wear clothes!

We’ve been talking to the doctors again about timeframes for going home. They said that they would really like to see him feed from a bottle before going home. If he can’t figure out how to suck, then they said the alternative is a g-tube, a feeding tube through his belly and into his stomach. If this is the route that he goes, he will have to stay in the hospital for at least 4 more weeks. The doctors said that they would not want to reopen his abdomen so soon after just closing it from the omphalocele hernia. So we are praying that he’ll be able to feed from a bottle and hopefully move up his homecoming!

A week ago we mentioned that Carson might have an inguinal hernia. Well it’s been confirmed that it is an inguinal hernia. No one is very concerned about it right now since it’s large and is not constricting any of his intestine. They said that if they have to do a surgery for the g-tube that they will likely repair the hernia at the same time. Our poor little guy is going to have a lot of scars.

Heather and I have been looking toward the future and trying to make the necessary steps related to Carson’s care and treatment. We decided that we don’t want just anyone to be operating on Carson’s head, face, and hands. There are some very skilled doctors out of state that have experience with helping kids with Apert. One doctor that we are looking into is Dr. Fearon in Dallas, TX. He has pioneered some of the treatments and methods for surgeries of kids with Apert. I emailed him last night and he personally responded to me this morning. I was very impressed by his prompt response and his immediate concern for Carson. We are going to be emailing him pictures of Carson and then talking over the phone about the next steps we’ll need to make for Carson’s treatment. If you want to read more about the Dallas Craniofacial Center, click here.

My brother Michael gave us a great idea of a way to donate money for Carson’s care and travel expenses. He said that you can use Paypal to give money as a gift. If you have a paypal account, you can login and go to send money. For the email address to send it to, use stevesanders8 AT hotmail DOT com. (I wrote it this way so I don’t get spammed, but you know what I really mean). After you put in the dollar amount you’d like to give, you can select the personal tab below and mark that you are sending the money as a gift. When you choose this option, paypal will not charge a fee for sending the money. This is a great option for people that are out of state that want to give.

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