Getting better

Phwew! What a long night last night! I almost felt like I was on a newborn nursing schedule again. Emery was up about every hour needing more morphine. Thank goodness I can control the button. We ended up giving him more each hour until about noon, when we decided to spread it out a bit. He seems to be a great deal calmer when I sleep in his little bed with him. I lie next to him just on the railing of the bed so I feel it and I won't fall out. Every time a new doctor comes in for rounds in the morning I hear them say, "she's going to fall out of there!" Sometimes I feel like falling out just so I can roll onto my other side- it's quite uncomfortable by morning but completely worth it. It isn't often that my extremely independent sleepers will sleep well in my arms or even next to me. In fact Emery is so soothed by gripping my shirt or my hand when he is sick that I can lower his heart rate at least 20 beats per minute just by getting in bed with him. It is such a good feeling to know that just my presence is sometimes better or at least faster acting than morphine. ;)

As of this morning Emery still hadn't smiled for anyone. He just kept looking sad, or mad, or sick because of the pain. Then Lainey came in with David around 11 am and she was the first one to get him to smile. He also let me hold him and rock him for a while. You can see his mood improve throughout the day just in the photos- thanks to Lainey getting him started.

Not much changed today. We are now in a holding pattern until his tummy wakes up and we see some significant stool, which would indicate that things are moving through his colon. At that point we shouldn't need to drain the bile out of his stomach (so he doesn't vomit) anymore. When we get there we should be able to introduce some small amount of food. When we spoke to the surgeon it sounded like they were weighing the costs and benefits of feeding him continuously through his g- tube at a very slow rate, vs. allowing him to eat very small amounts throughout the day. Trophic feeds would keep him tied to a second pump and bag all day, limiting his mobility, and he wouldn't even be eating for comfort or social purposes. While trophic feeds may be all he can tolerate, it is worth seeing how much he will be able to handle or adapt with just his colon.

Since the surgery hey have been quickly eliminating the draining aids he can do without. Yesterday they removed the NG tube, which had been sucking bile out of his stomach. They also removed the foley catheter and he began urinating on his own right away. Those are both things he had for WEEKS last time we were here! It is amazing how well he is doing compared to last time when he was so sick. Today they clamped his g tube and then put a vent on it later. Unfortunately, he did vomit toward the end of the day but it seems like most of his bile is working it's way down. Prior to this admit he was making between 500 and 600 ml of bile each day. Tonight when he vomited he only lost about 200 ml. The rest has to be going somewhere.

Over the past day or so I am certain I have smelled some gas from Emery. Each time I would check... and nothing. Then today I saw a teeny smear on his diaper. Hardly quantifiable but still exciting. I never thought I would be waiting with great anticipation for my child's next toot. Still no bowel sounds though, according to the night nurse.