shows off her fancy organ inspired nits
What a Bowel!
So here I am, 4am, searching the internet for successful small bowel transplant stories... Ever since I got the laptop, I've been a researching machine. I told myself that when we get up to Pittsburgh, I will let them give us all the information. The obsessive compulsive in me just isn't letting that happen. I'm sure anyone that has had any kind of health issue, has checked the internet for info. Let me tell you what.....the internet can scare the hell out of you. Why is that? I'm sure Caleigh's blog has scared a few readers along the way. Why is it that when you go searching for the positive you get sucked into all the incredibly sad, negative stories & cases. It's just unnecessary.
Did you know that something like 75% of babies still on TPN after 4 months, die due to complications caused by the necessary evil. Caleigh has far exceeded these odds. One of these complications is liver failure. Her liver levels, the 3 numbers they look at, are now normal. NORMAL! Our doctors are in amazement and so are we. Our GI doc asked if we were praying about it......uhhhh...yeah. Some tiny enteral feeds, a medicine and a lot of prayer.
Did you know that your small bowel is like a starting point for getting sick. If your guts aren't there than the immune system attached just doesn't work. That same strong immune system related to the bowels is the same one that forces most small bowel transplants to reject the host (person getting the plant). It makes this transplant difficult. Often called 'the final frontier' in transplants. Scary, huh?
Did you know that a transplant can cost upwards to a million dollars, and that's just the transplant. There is the medicine and constant follow ups necessary for survival that stick around for a lifetime.
Caleigh has 94cm of small bowel. This is amazing in short gut land. A normal newborn comes into this world with 150cm. Why is her gut not working? Damage from the Gastroschisis and subsequent 6 surgeries. Most likely. It's hard to treat Caleigh's situation. Slow things down from a short gut stand point and then speed things up from a motility point of view. Tons of meds acting against each other daily. It just gets tiresome.
It's just disconcerting to read all the sad stories related to bowel transplant. Here's what I do know. We love Caleigh with all our hearts. She is a strong little girl. We watch with amazement everyday and take the tiniest of achievements with a pound of salt... instead of a grain. We don't know what Caleigh's prognosis will be 2, 4, 7 years down the road. Some of the statistics are sobering and others are encouraging. We sit in a sea of denial, and love our daughter more and more each day. It's hard to think about life before Caleigh. That was then and this is now. Make the most of your situation, no matter how difficult it may be. God has a plan, just because he didn't supply us the cliff notes doesn't mean the story isn't already a classic.
"Life is not measured by the number of breathes we take, but by the number of moments that take our breath away"
Stay Positive, Stay Strong, Stay in Love, Stay off the Internet!