The last few days have brought about a few changes with Elias and his cares. First off the G-tube site is looking much better. After our last update they ruled out the cellulitis from the blood culture drawn earlier in the week. They actually contacted the ostomy nurse for suggestions on the skin irritation. She concocted a mixture of things together that has worked wonders, so that has been a great relief. On Friday afternoon at about 3:30, as if on cue, the G-tube began leaking significantly again. It always seems to happen at about the same time each week, very odd. Overnight Friday into Saturday his night nurse found his bed and clothes completely soaked. He also had some spitting up issues again. On Saturday morning they discontinued the compressed/bolus feeds and returned to the continuous feeds @ 22ml per hour for fear that Elias was losing too much fluid and primed to become dehydrated (again). With very bad IV access they decided it was best not to take any chances. Of course, we asked this morning for clarification on why they decided to return to continuous feeds. Hearing the words "due to the emecies (spitting-up) and the G-tube leakage there is cause for concern about dehydration" as said by the medical team made us bite our tongues from spitting out our actual thoughts...which were, "but I thought there was no cause for concern because every baby does this" hahahaha!!
Otherwise, Elias was a very happy baby this weekend. We had a lot of fun playing and learning. We now have three trach tube changes down and are feeling pretty good about that process. Our family meeting is on Tuesday morning. We have been working on getting our thoughts together and preparing ourselves for this the last week. We should have a very good idea when we finish of what to expect, or at least we hope. As I type this update the photos are uploading, but I am experiencing some slight difficulties with the site. This is the second time I am uploading them tonight. I hope to have them up soon, but if not I will have them up ASAP.
We just want to thank everyone that has taken the time this week to comment and write emails this week. Again, we are sorry we ave not been able to respond to everyone yet, but please know that all of your responses and suggestions made an impact. This has certainly been a very rough week in terms of balancing everything. Thank you all again for the support, you have no idea how much it helps.