More good stuff...

We have continued to do well at home...Carson is doing really well, appears to be gaining some of the weight back, has only thrown up 3x since we've been home (which two of those times were somewhat induced by us - on accident), he continues to willingly put food in his mouth (still not eating any volume but tasting ALOT more!), and the pathology report came back on the small mass they removed just below his trach. It WAS a hemangioma...so NOT residual teratoma, which was GREAT NEWS!

Please do be praying for his G-tube site. Although it is not leaking anymore, it is not healing like I would like to see. We have tried a couple different things to get it to heal but so far, really no luck. It has an area that I believe is skin breakdown but the spot it is in, is difficult to dress or treat with anything.

Kellen is doing really well...eating more and more and is in to EVERYTHING! He is SO passionate about life : ) The boys have also been interacting more and more...giving hugs randomly, helping each other out, sharing, or NOT sharing, occasionally pushing, pulling, and hitting but still everything that is NORMAL (such a wonderful word : )

We have been able to play outside the last three days and the boys just LOVE it! Looking forward to the spring weather and more time outside!

Other things that we could use prayer for is in deciding whether or not to pursue a surgery for Carson's slow gastric (stomach) emptying or look elsewhere for possible treatment. Since he isn't throwing up anymore, I have a really hard time willingly putting him through ANOTHER abdominal surgery. However, the surgeon said a G-button (the lower profile tube) may never work as long as he has a problem with emptying his stomach. Decisions, decisions....

Much thanks to everyone for the prayers...I'm waiting expectantly for an Easter miracle with his G-tube : ) Happy Easter to everyone!

LOVING the wagon ride!

Carson is supposed to be asleep but he is talking and playing instead : )

Kellen worked really hard to pull Carson on the horse! SO funny!

Part of our Easter egg coloring crew! (Mimi hasn't been feeling good so she is sporting the new look : )

Carson's turn...

...and his response after the applause was TOO much for him.

"Ooooooo!" Kellen was SO excited about dropping the eggs in...

Update from Dexter

Well, we have been home for 48 hours and so far, so good overall. Carson has only thrown up one time...this seems easy compared to what he was doing. I'm just praying that he can continue to keep the majority of his feedings down because he has lost a significant amount of weight (& no wonder because he didn't eat for almost a week)...you can tell it in his legs, face, hands, & feet : ( But he is SO happy to be home and be with Kellen. And I think Kellen is ecstatic to have Carson home too!

Another praise and I'm still somewhat speechless...Carson has started WANTING to put food (well, anything) in his mouth! This means we have to watch him very carefully because he tries to eat whole bites of things (puffs, french fries, toast, grilled cheese, strawberries, etc.) and he doesn't know what to do with it once he takes a bite. I think it may have something to do with getting more teeth & just wanting something to bite on but I'm not complaining!  He has done better the last couple days with drops of liquid, yogurt, or baby food in his mouth. I don't think that this stage will necessarily last but it is a comfort to know that he can manage small amounts when HE wants to.

Sarah did a good job updating along the way...please continue to pray for healing of Carson's g-tube site...his current site doesn't look as good as the one from Cincinnati (St. Louis had to revise the stoma when they reduced the hernia). It has a small area of reddened skin that isn't as tight around the tube. The nurses said it should heal but I'm never too confident when it comes to Carson's g-tubes :/ The day after we returned home, the g-tube was leaking. 'Are you kidding me?!?!'...this what we had surgery for in the first place. We tightened the g-tube up & since then, it seems to be doing better but who knows! I just don't want these surgeries to be pointless!  And then secondly, please pray for guidance for us...to know what steps to take with this new information we received from our latest stay in St. Louis (the possible damage to the vagal nerve that is effecting his gastric emptying). Should we do another surgery to attempt to improve the speed at which Carson's stomach empties or should we look into other options? What the surgeon said made sense, yet I just hate to put Carson through ANOTHER abdominal surgery, with ANOTHER incision, and ALL the risks that come with any surgery.

Thanks again for all the prayers along the way! It seemed like such a LONG week but I know that is nothing compared to what some families are going through or have gone through. We are so glad to be home and back to our normal schedules!

Good news

Carson gets to go home!!! Praise Jesus : ) They do believe we have found another area the teratoma damaged and believe the slow emptying of his stomach is due in part to the teratoma's affect. His vagal nerve probably was damaged from the teratoma and so his sphincter in this stomach is not opening properly, so it does not let food pass out of his stomach as fast as it should. Babies should empty their stomach about 1 hour after eating and Carson takes over 4 hours to empty his stomach which is unusual. This isn't an urgent problem, but the doctors will be monitoring and determine what steps to take in the future. The plan now is to carry his puke bowl around and just get really good at catching puke : ), which Liz and Preston are already professionals. For now, Carson is super excited to go home and get uninterrupted sleep and Kellen can't wait to have his mommy, daddy, and buddy home. Thank you all for your prayers. We are eternally grateful.

Patience

Preston, Elizabeth, and Carson are getting frustrated with the continued stay in the hospital. They are doing much better with being patient than most would, but are ready to get home and back to a normal routine. What was supposed to be a simple surgery for the G-tube with the more difficult part being the airway is turning into quite a situation. Carson still was not emptying his stomach properly, so they sent him back to do a G-tube series this morning. Elizabeth just told his they still do not see his stomach emptying properly on this study. They do not know why, and Elizabeth and Preston do not know what the next step is. It is so difficult to try to entertain a child in a hospital, let the child get sleep (because he is woken up all the time with another individual wanted to come in and poke and prod), try to get sleep yourself, and be away from your family. They are handling it like saints, but please keep them in your prayers. We are praying for wisdom for the physicians, because we all are at a loss as to why Carson is not emptying his stomach. Praying for God to heal Carson and send peace to Liz and Preston that he is protecting and caring for Carson.

Wed March 20, 2013

Thank you all for your prayers.  Carson was feed at 3:30pm, but had fairly significant residual food in his stomach 4 hours later; as a result, they feel it is important for him to spend another night in the hospital.  Please keep up your prayers for Carson's healing, and continued patience for Liz and Preston.

Good news

Carson is out of surgery. He did not end up having a twisted stomach. The doctors found an internal hernia. His omentum (layer of tissue around the abdominal cavity) developed a hole and his stomach and part of his colon had moved through the hole and were creating an internal hernia. They fixed this hole by creating a horseshoe shape so nothing can get caught there again. This probably occurred during one of his procedures to place a G-tube. The good news is they were able to use the newest G-tube site, but did have to extend the incision more to get the hernia repaired. Overall, Liz and Preston feel it was a successful surgery. They will start feedings in 24 hours, and then hopefully, he will tolerate this well. Be praying for his healing and pain after this procedure. The first day or two after his last surgery was difficult for him and Liz and Preston. We continue to pray for healing and hope to have our sweet boy back in Dexter feeling great very soon.

In surgery

Elizabeth just texted me at 12:30 and they are on their way to surgery. Carson's blood sugar came up, and off he went. We continue to pray.