Sorry it's been a while. For those of you who hadn't heard, Emery ended up having to stay on Saturday. As we were awaiting discharge he started to look a bit nauseous. Sure enough, not two hours after that last happy photo of Emery was taken at the cafeteria, we were back to square one. He started vomiting and holding his belly and then tossing himself around exactly the same as before. He was heaving for about two hours so we finally got him hooked back up to his IV for hydration, which I am thankful we still had access to. We had previously decided not to take it out until we were walking out the door because Emery has such an eventful life history. We also put the NG tube back in to suck out his stomach contents. That made him a lot more comfortable. He slept much of that afternoon and by that evening he was starting to look a little better.
Unfortunately, his regular team of surgeons was off after Saturday morning and we were stuck with some who had never seen him- not that I doubt their competence, but we ended up doing more x-rays and blood work than probably would have been necessary otherwise. It felt like we were truly starting over, not only with Emery, but with the doctors. So frustrating.
By Monday, which seemed like much longer than two days, the surgeon who has followed Emery from birth was back and had explained Emery's history to the new team. Nonetheless, at rounds on Monday morning they were discussing possible surgery for the afternoon that day, depending on how his very last x-ray of the series looked a little later that morning. When they made afternoon rounds they said that based on his past history and the fact that it looks- from the x-ray- like things are slowly moving through his gut, they were willing to give him one more chance with belly rest and more gradual transition to oral food and fluids. Phew. Surgery may be inevitable at his point, but even the doctors don't really know what they are going in to find and Emery is perfectly comfortable as long as he is not eating or drinking anything. It could be that we had just stressed an already injured belly by going from nothing to 68 oz of fluid and some soft solids in 48 hours. I think it will become clear in the next several days. Once again, praying for poop.
Needless to say, it has been a bit of a rotten few days. Especially Monday morning. I got word of looming surgery for the afternoon, then had to leave for a couple of hours to get Lainey situated. As I was leaving, the last x-ray (simple but a bit traumatic for Emery) was ordered and the phlebotomy cart came down the hall for his morning poke. Aaaagh! It is so hard to see our now strong, healthy little boy go through all of his again.
On the brighter side, we have received such a tremendous outpouring of prayer, encouragement, and help with meals and child care from the people at our church, co-residents in David's program, our family and our neighbors. I know that Emery is being prayed for by several congregations back home too, and that is so important to us. Our immediate needs for child care and a few meals during the week have been filled and we feel secure knowing that both of our kids are being cared for by some pretty amazing people. I had originally intended on transporting Lainey to whoever could take her for the day, but Mavis Luurtsema and her daughters have offered to watch Lainey 4 days this week to help keep her schedule consistent. For those of you who know Mavis and her girls, you can imagine how much fun she is having. For those who don't know them, Mavis is such an amazing mom and all of her girls are so kind, mature, and responsible. Lainey is so sweet when she has been with them. We are blessed by such a large commitment to have her all week. She will also be staying with the Hammonds for a day and over night. Lainey really looks up to their girls as well, and is very excited for a sleep over with Emma, Sophie, and Oliver (Emery's good little friend). I never thought I'd let Lainey out on a sleep over this soon but the "cat us out of the bag" now- she knows how fun it is to have sleep overs with other girls. Between Ela, Alina, and Amanda (Mavis' two eldest daughters), we only have to have Lainey up at the hospital early in the morning twice- mainly because it has been nice to spend time with her. The rest of the time one of them is transporting her where she needs to be.
We have also had several people offer to visit with Emery if I am away getting Lainey to bed at night or spending one with her during the day. Anita and Mary Elizabeth (friends of ours from church) came up on Monday night and sat with him. I know he had a great time because he slept solid all night. It was such a great feeling to know that he was being held and played with while I was gone with Lainey.
Another praise: as of today at 2:00 pm Emery finally pooped!! He has pooped two more times since then and continues to be in good spirits. We had an especially fun evening playing cars, reading books, and taking a sponge bath. When I saw his surgeon in passing tonight she was pleased to hear the news. They have a meeting with many doctors in the morning and they are going to discuss Emery's very puzzling situation, which once again has them wondering what is the best next step.
In he mean time, Emery is scheduled at 7:45 am for general anesthesia and a PICC line for a better quality, more convenient access to his blood stream. It isn't as permanent as his Broviac was, since a PICC will usually come out before we go home. It also doesn't require anesthesia a second time to have it removed. A PICC will be nice so he can get total nutrition from his IV- important at his point because he has lost over two pounds in a week and a half (a lot for a little guy). He will also be able to have his labs drawn from it so he won't need to be poked as often. We were hoping not to need a PICC but it is a nice alternative to a regular IV if it is necessary to have longer term access to his blood stream. We won't have to worry as much about pokes for blood or a new IV when the old ones fail. I am excited to see what their plan is tomorrow. Hopefully he can at least have a little water by mouth.
I hope that all makes sense. I have been working on this post for two days in between falling asleep and playing with Emery. :)
Melissa
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