Taking a step back

"Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it's a cha-cha.” -Robert Brault

Thank you to everyone that has been asking about Landon. Unfortunately, the reason I haven't been updating on him online the last few days wasn't because things got better, it was because we were plotting our next move.

The random vomiting spells are only getting worse. It has happened every day since Tuesday- 4 consecutive days now. Landon's GI system is so out of whack there's no point in even trying the botox. We are over a year post pull-thru and it seems that things are getting worse instead of better. Some may remember this past summer when we were entertaining the thought of going back to an ostomy. I felt pretty strongly about doing it to get him off the Flagyl (which he has had to take over a year total now) and to improve the quality of life for Landon and the rest of the family. Landon should not have to deal with 3+ hours of irrigations a day, and it takes away time from our other kids. He shouldn't have to deal with projectile vomitting all the time, the belly aches, not ever wanting to eat and pretty much being force fed. But despite all that, having an ostomy stinks for him because it makes him "different." So we tried the Botox, and it helped. Just not enough. Landon spent his first Christmas eve and first birthday in the hospital.. but he is not spending his 2nd or his 3rd. After the way the last 3 months have played out, I have complete confidence now that going back to an ostomy is the right thing to do.

So the 30th we will head back up to Cincinnati, but instead of doing the botox, Dr. Levitt will be giving Landon an ileostomy. We will then have to stay in the hospital for a week and possibly a few additional days. This time we know what to expect post-op. We already know how to do bag changes, and even though they are no fun for us, Landon had a much better quality of life with an ostomy. I'm looking around for the coolest pediatric ostomy belts that I can find to conceal it. I learned from our last go round that many, if not most people are very freaked out by the appearance of it. After all, it is live human intestine hanging out of the abdomen, and even I had a hard time looking at it and touching it at first. But Landon is completely aware of what goes on around him now and I don't want him to experience any dirty looks or unnecessary rude questions. He will just have some sort of cool belly band he wears around his waist barely peaking out of his pants.

Since it is another temporary ostomy we know that he will have to undergo at least one additional surgery eventually. I want to emphasize the word eventually. We are leaving things alone for at least a few years. There is a good chance he will go to kindergarten with an ostomy. Personally, I'm tired of making decisions that affect his quality of life. I can't even explain how bad I feel when I think that we could have done something differently thatmay have stopped him from going through even a little bit of the adversity that he has faced. I hope that we can leave things in place until he is old enough to want to reverse the ostomy, and to understand the risks and challenges that will come along with it. Who knows, maybe within the next few years modern medicine will catch up to these complex HD kids. There is some promising research going on in Boston right now where they have found that injecting cells from the intestines of healthy mice into the intestines of mice with HD caused the aganglionic segment of the intestines of the HD mice to gain ganglion cells and function. That's terrific news, especially for the children affected with total intestinal aganglionosis. In Landon's case, that particular study may not have much use since his affected segment has already been removed and he continues to have poor function of his colon for unknown reasons.. but hey- at least they're getring somewhere!

I hope everyone has a Merry Christmas! I will update soon on how the surgery and recovery goes. As always, please keep Landon in your prayers.

The night I poured my 17-month-old a Coke...

I'm sure you can tell by the title that this is going to be an interesting post. I really don't know what else to do, though. Landon is sick- he has been having a horrific vomit fest all night. Our closest children's hospital is 2 hours away. On one hand, I don't want to let this go to the point where we miss Carson's birthday and Christmas Eve because we are in the hospital. On the other hand, it is late at night, the other boys are in bed, we would have a lot of packing to do, and the roads are icy and expected to get worse. We don't want to take Landon in unless it is completely necessary, and the key to that is to keep him hydrated while we hope and pray he responds to things we can do from home. It's safe to say at this point that his last round of Botox is completely worn off, and even the full dose of Flagyl and 2 irrigations per day isn't keeping enterocolitis away. Why does this have to be the weekend? If I call Cincinnati they will put me on the line with a resident and he or she will tell me to take Landon up there. Unlike Dr. Levitt, the resident will not be aware of how much experience we have with enterocolitis, irrigations, and managing this stupid disease while doing everything we can to keep him hydrated.

Which brings me to the title. A little background: we are a very healthy lifestyle family. We eat mostly natural, organic, and unprocessed. Carson and Austin have never tasted a caffienated soda. Maybe twice a year as a special treat we will let them order a rootbeer or Sprite when we're out to eat, but that's it. Unfortunately, though, my title is a true event. I poured Landon a Coke in a sippy cup and he drank about half a can. What else is there to do when your son is vomitting profusely and you desperately need to get clear liquids in him. And he refuses Pedialyte. And he refuses water. And he refuses apple juice. You bet he guzzled down the Coke though. Thank God he did because it was my last resort.

Please keep Landon in your prayers the next couple weeks. He has another round of Botox scheduled for the 30th and so we need him to hang on through the holidays without landing in the hospital AGAIN. This poor child spent the better part of his first 3 months of life in the hospital, and his 1st birthday, and as most probanly remember we had to rush him to the hospital on Carson's 4th birthday last year and missed Christmas Eve and drove all night just so we could be back for the boys to get their gifts from Santa Christmas morning. I want nothing more than not to have a repeat of last year, so please keep him in your prayers!