Lisa and I talked with the doctors and surgeons today and got a much better idea of what lies ahead for James. It is going to be a long journey, and it will be quite awhile before we really know what all of the long term implications are for him. Here is a basic rundown of what we have learned.
The surgeons decided that there was too much of a risk of damaging some of James' remaining small intestine if they went in today and closed his incision. Instead they are opting to let the wound heal over on its own and once he is stronger and the swelling has subsided, they will look at the prospect of re-attaching the two pieces of small intestine and closing up the area. The soonest they would even begin to look at doing that is 8 weeks from now and likely further out than that. At first we thought this was a big setback for him, however, after a lot of discussions with the doctors, it really doesn't change much in the way of the short term issues for James, and in one respect, it will be good, because it is one less surgery his body has to endure at this point. Even had they closed the incision most of our next steps would have been the same, although he would have had to recover from it as well.
There are several things that will happen now. One issue for him now is that he is on IV fluids. The body can tolerate this for a period of time, however, if you aren't getting any food through the stomach and the small intestine for an extended period of time, bile starts to build up around the liver and begin to cause damage. The next big phase for James is to slowly get his body to heal (get off of the ventilator, make sure the PDA heart valve isn't causing issues, etc.) so that he can be at a point where they are able to slowly introduce feedings. There will be a several week phase in which they are slowly introducing small amounts to find out what the tipping point is for James in terms of food that his shortened small intestine can process. It will likely be a process where we take two steps forward and then a step back for several weeks before we are at a point where we have figured out what he is able to tolerate.
After all of that, they will start evaluating him to see if he is ready to have the two pieces of bowel reattached. We'll need to pray that his bowels are able to grow, even just a little between now and then, because they will need to remove a little bowel in order to get fresh tissue to reattach and he's already on the borderline of having enough bowel as it is. Once they finish that, we will have to start the process over to find the new threshold he is able to tolerate. Based on that, we will then be able to find out what the long term implications are for James. All of this is several months away. At this point it is a little uncertain as to whether or not James will be able to come home during any of this or if he will be in the NICU the entire time.
Overall it will be a long road ahead for James and all of us. On the positive side, he has definitely been making good progress since his surgery, and he is needing less platelets and almost down to not needing any oxygen from the ventilator. James is quite the fighter and with everyone's prayers and God's help I am sure he will come out of this fine in the end.
We don't really know very much more about the PDA at this point, but based on the discussions today, I am slightly less concerned about it than I was. Our hope would be that it is gradually closing on its own instead of needing surgery to close it, and we should find out if that is the case sometime toward the end of next week.
At this point I think the updates will become slightly less frequent, as I think the progress will be positive but slow from day to day. We appreciate all of your support and prayers. I'll also make sure we keep everyone updated on Madeline's progress as she goes through her surgery . Considering the amount of stress that has been heaped upon us all at once, I think we are holding up pretty well...thanks to your prayers!
Keith & Lisa