Have been very busy and rather up & down. Elias continues to spit-up after many of his feeds. He seems to be OK overnight, but during the day time he seems to be having issues. The nurses that have had him keep telling us, "baby's do that, they spit-up." OK well to us history tells us that when Elias spits-up there is something wrong. Granted he is now getting much more volume of food and it is possible that is contributing, but we are wondering if it could be reflux? We do have a few concerns with that, mainly the stricture in his esophagus, but also potential for aspirating. The doctors did get a blood culture to check for infection, but the preliminary results will not be available until Tuesday morning. They also did some other blood work last night, we should get the results for that later this morning. Elias just seems off to us again. You can tell he is not feeling well. Although he does have some moments during the course of the day when he would smile & laugh. It just is not as free flowing as usual.
His G-Tube Spot on Saturday was really looking horrible. The redness surrounding the site had extended further than it has before. Here is a photo from Saturday evening----------------->
Now typically the redness around the site is generally in a circle and extends about an inch or slightly more, but you can see how it is pushed down. We suggested that it might be from leakage since the redness is caused by the acidity from what is coming out. We were told there has not been enough leakage for that. First off, they stopped weighing it so there is no monitoring other than by sight. Secondly, Elias has not had any of his normal nurses the last several days so there is no way for them to know. Finally, look at the pattern of the redness, Elias lays mostly on his right side so it would be a downward leak. We are not suggestion huge amounts, it only takes a little to irritate the skin. You can also see the mucus like leakage where the button enters the stoma, as well as a thin band extending from the pink foam to the stoma. I took this photo to tangibly show the doctors what are concern is and ask them if this is what they still call acceptable.
On a brighter note, Elias had some visitors yesterday. Katharine's Nana & Papa along with Aunt Kathy & cousin Cody came to see him. Elias was awake and really enjoyed the company, and so did we. He was able to smile and laugh some despite feeling a bit under the weather. I think it made him feel a little better to have that fresh interaction. Elias enjoys stimulation, he has the making of a remarkable learner. He is fascinated by new things, and we can not wait to help him explore that desire by taking him places. We were able to get a few photos, of which I will try get up later today or tomorrow. We are glad they all got a chance to interact with him and see a little of his cute personality in action. Thanks for coming!
We are hanging in there, although at times it is admittedly rough. We are a little weary and run down, but he fuels us with that beautiful face and his strong will. I think things have been so tough lately because there is a lot more going on outside the hospital, in terms of getting everything lined up for his coming home...eventually. Also since there is so much uncertainty and lack of clarity with almost everything, that certainly does not help. Hopefully tomorrow, at the family meeting, we can all leave out of there with a much better focus on what is ahead.