Watchful Waiting

No news has been good news for the past couple of days, though I am sorry to have left you hanging. Emery has been making slow but steady progress, as his body starts to recover from the string of surgeries he went through last week. In my last post I mentioned that they were considering tapping his belly to relieve some of the fluid that may be causing pressure to build up in his abdomen. Upon ultrasound, it appeared that there were only a few small pockets of fluid and that draining any one of them wouldn't provide the kind of pressure relief that they would have hoped. Unfortunately, his belly is still 68 cm around and it is still a bit of a mystery as to what is going on.

Emery looks so much better today than he did a few days ago so I thought I'd share a photo of his cute little face. He is still very sleepy because if the medications he is on, but he does open his eyes once in a while. I get so excited when he does because it only happens a couple of times a day. Sometimes he'll squeeze my finger at the same time, which feels like a bear hug lately since I don't get traditional hugs. It is so reassuring when he is a little more alert.

His heart rate and blood pressure have been looking good and consistent, he is breathing well with the ventilator, and his other systems seem to be functioning appropriately. He has even started getting rid of a lot of fluid on his own by increasing his urine output- he is not near as puffy as he was a couple of days ago. Despite all of his progress, he still has a fever unless it is being treated. There are several causes of fever that they are trying to rule out so we can continue giving his belly time to heal. They are sending urine, secretions from his lungs, and blood from each of his lines to the lab every 24-48 hours to keep on top of any possible infections. They did find some Gram-negative rods in his lungs, which they later found to be Enterobacter. Ventilator acquired pneumonia is not too surprising with as long as he has been on the ventilator. They have him on several antibiotics so they can hopefully kill whatever he has brewing.

There was some talk of trying to extubate him mid week, next week, so we are praying his fever will go away and his belly will shrink before then. Each day when they round the doctors seem cautiously optimistic about his recovery but unable to provide any long term picture of their plan. They want to continue watching and waiting as long as Emery continues to do well.

If everything goes the way we would like, Emery will keep the remaining 100 cm of intestine, his fever will go away, he will be extubated next week, and his belly will continue to heal. He will keep his G-tube and malecot tube for drainage until he is well enough for surgery to reanastomos (put back together) his remaining intestines.

In about 4 weeks we will put contrast through the malecot tube and study that with x-rays as it passes through the lower segment of Emery's small bowel and colon. Based on that study, the doctors will be able to get a better idea of the viability of the remaining questionable section of bowel. After at least 8 good weeks the surgeons will consider reanastomosis. At that point they would also hope to repair or remove any obviously damaged sections.

It may be thinking too far ahead right now, but once Emery is back together again we will be able to try gradually feeding him into his stomach with a feeding pump. Any calories consumed that way will decrease the amount and duration of the TPN required to sustain him. Eventually, our hope would be to get him eating at least some of his calories by mouth again and get him off of TPN. We will see- it's going to be a long road. There is hope, though. His GI specialist said she has seen someone with just 40 cm remaining adapt and eventually stop TPN. She said it is very dependent on the individual child and their specific set of circumstances.