Prayer for James' Surgery: May 18

Behind this adorable face is the heart of a fighter. I could tell he was going to be a fighter even when he was in my womb. On hospital bedrest, I was hooked up to monitors on my stomach twice a day to track any contractions and James' heart rate and movements. Ideally it should have only taken 20 minutes, but it often took an hour or more because Little Stinker knew exactly where those monitors were, would kick me directly under it and then scamper off to a new hiding place. He was a clever boy and knew exactly what he did/didn't want! :-) To this day, he's pretty much happy all the time...unless you're messing with him or doing something medical. {Forget this, let's get back to the snuggling and playing!}

James will be going to Emanuel Children's Hospital on Monday, May 17 for a bowel-clean-out procedure and to get extra blood products, etc. We'll stay overnight and then he'll go in to surgery on Tuesday, May 18. Regardless of the surgery outcome, James will continue to be on TPN through his chest IV for a long time {perhaps a year or more} as his main source of nutrition. If the surgery works, we'll start the balancing act of increasing the volume of formula he receives through tube feedings/by mouth to see what he can tolerate. {Currently he's on a slow drip for 20 hours per day of both TPN and formula.} Eventually we hope to start mixing in small amounts of the breastmilk I have stored in the freezer, and then someday add in solid food like baby cereal and pureed baby food by mouth. We are lucky that James loves the one bottle {approx. 1 tablespoon of formula} he gets each day--he'd love to have more! Some kids with digestive issues develop a total aversion to anything being in their mouth, so I'm happy that he's a willing eater! The ultimate goal is for his body to be able to sustain its nutritional needs by oral feeding only, allowing him to go off the TPN completely, which is very damaging to his liver long-term.

We have an awesome pediatric surgeon, Sanjay (Jay) Krishnaswami {he also teaches at OHSU} who's been with James since the very beginning and we trust him completely. He said there are three likely scenarios for the surgery:

Best Case Scenario:
The doctors would discover minimal scarring internally {scar tissue is a big risk, since they had to leave his stomach incision open to heal from the inside out when he was in the NICU, which took a couple months}, the two cut ends of the small and large intestine would be easy to find and healthy, and James would come out of this surgery with re-connected small and large intestines that function normally {or as normal as possible, given his trauma}. He will most likely have a G-tube placed directly into his stomach {for feeding through a tube/syringe} and would no longer need his nose tube. This long G-tube would later be replaced with a Mic-Key button on top of the skin {looks similar to the little tube you use to blow up a beach ball, then collapses down flat}. If the intestines reconnect well, he'll no longer have the ostomy or catheter tube in his abdomen {this tube was a "place marker" that the surgeon put in the first time--he said when you go in to reconnect intestines, it often looks like wet mangled toilet paper inside, making it nearly impossible to find one end of tissue unless you have something to guide you}.

Middle-of-the-Road Scenario:
There may be a lot of scar tissue, which sometimes adheres to the stomach wall or other organs, which can make separating and reconnecting tissue a challenge. If the cut ends of the small/large intestine do not look healthy or look like they would not form a tight seal, he may not be able to reconnect them. At that point, he'd have to create a new ostomy {bring one end of bowel outside the skin, like James has now for the small intestine} with the longer piece of intestine that includes small bowel-connection piece-large intestine. This would allow James to have more length of intestine with which to absorb nutrients from his food. We'd likely then have to schedule another surgery for 6 months-1 year from now to try again. {I REALLY hope he doesn't have to have another ostomy! His bag leaks every single day and it's just a huge pain all around. I can't imagine how that would work once he starts crawling.}

Worst Case Scenario:
He'd open James up, the scar tissue would be too deep and intrusive to even find the cut ends of bowel or what bowel he did find would be damaged enough that it couldn't be reconnected, and he'd have to just sew James back up without really doing anything. We'd have to wait 6 months-1 year to try again, if he even deemed it possible.


Aside from the bowel issues, James could have complications from the surgery itself, like he did last time. Here's a list of complications we want to pray against:

1. Blood loss or problems with his blood work/labs; erratic heart rate.
2. Infection in the bowels, at the incision site, in his IV line or anywhere else.
3. Trouble breathing, causing him to need to be intubated and kept on a respirator after surgery {would need to go to ICU}.
4. Severe swelling and/or scar tissue, so that the skin would not be elastic enough to allow them to close the wound; needing the wound left open.


I generally have a good feeling about this surgery, but you just never know what may happen. We'd appreciate your prayers for strength, peace, good sleep at the hospital, and patience with the nurses. Keith's mom Darlene has been gracious enough to fly out here to be with us, starting May 12th through June 5th, so we'll have some extra hands to help with Maddie and giving us a break at the hospital.

We'll likely have to be at the hospital for a whole week {ugh!}. Probably after the first couple days go by, we'd love to have visitors {those who show up with Starbucks and/or Diet Coke and chocolate get double brownie points!}...but we'll update the blog or email as things get closer and we know more.

Thank you all for your faithful prayers and continuing to ride with us on this journey! Here's to a big next step! :-)