Waiting ......waiting......

Waiting is what we've been doing for 66 hours, now. I was talking to the mother of a boy named Larry, who has been Emery's room mate twice already. They both went into surgery on Friday for similar issues and got out around the same time. Larry is 11 and has been a return patient at Mott for his whole life, so his parents have been a valuable resource this past three weeks, as we adjust to Emery's changing medical needs.  I was talking to his mom today and she put words to how parents up here feel at times. She said, "sometimes I feel like I want to rip my clothes off and run down the hall screaming." This is coming from a very level headed, model-parent of 6 very well adjusted children! There is such a roller coaster of emotions from grieving the loss of our "normal, healthy," life, to fearing for Emery's life, to anxiety during one surgery, to excitement prior to (and disappointment following) another surgery. I think David and I are still mostly calm and dealing with our end of things as well as we can, but we have moments when we'd like to join Lainey on the floor for a fit. : )

At this point, we would hope that Emery would be very stable and ready to start getting rid of some of his extra fluid since he is so, so swollen right now- up from 11.3 kg to over 15 kg in just a few days. Unfortunately, he doesn't seem to be doing as well as they would like to see him doing by 48-72 hours out. His belly seems to be getting larger, one of his lines started leaking last night, we have had some trouble finding a vent setting that he "likes," in large part because his belly is putting so much pressure on his lungs. He seemed uncomfortable for a while yesterday, so they gave him another medication to relax him even more. Today they said our prime concern is to make sure he is being ventilated appropriately so that we can give him time to heal if he is going to. They don't want to just keep opening him back up until they can't keep him stable any other way, or his belly just does not improve.

On the bright side, he hasn't gotten any worse. His blood pressure seems to be holding alright on its own, his heart rate is generally under control, he is making enough urine- all things considered, and his temperature is within normal limits as long as we have the cooling blanket and Tylenol. All of these things mean he is still stable enough to wait, and as frustrating as waiting can be it is so important right now. I never knew just how important it is to have all of the small bowel. As it is right now, it is going to take a long time before we are at a point where we can see how much nutrition he can get by way of his GI vs the TPN. If he has the rest of it removed he will be dependent on TPN for all of his nutrition, so I am glad we still have some hope that after the healing process he may be able to eat and absorb some of his food at some point. Again, all we can do is wait.

Fortunately, as I have said before, we have our church family, our moms, and a network of friends and family. We are so thankful for the meals and child care that have been provided so that we are able to focus on physically getting Emery through this. We are also thankful for the prayer and words of encouragement we have received from family, friends, and people all over the country, some of whom we have never even met, who are praying for Emery. Praise the Lord for providing in every way.