That is the way the last three days have felt. So many things going on, often feeling pulled in different directions. The good news is Elias' blood panels and cultures all came back negative, so there is absolutely no explanation for his elevated temperature. They even checked for ear infection and cutting teeth...nothing. Just a bizarre fever for no apparent reason. However, the last two days have been opposite, with Elias struggling to keep his temperature elevated. Ultimately, they concluded that it was from the G-tube leakage and his clothing being damp. He is acting fine, laughing, playing, fussing when you put a blanket on him, smiling at Donald Duck... all the normal stuff. So that is great news!
The not so great news is the new G-tube is not so improved anymore. It actually was until last night. That makes sense though because, after all, it is Friday. Admittedly the leakage with this type of tube is much less than the Mic-Key he had, but he is still losing an average of 15 ml per day (compared to the 24.5 before), he is now being fed at a rate of 25 ml per hour. He soaked 2 outfits today in the time we were there. I think it is time to have the surgeons do all his laundry until they get it right...all in favor.....
We got word today that phase one of the Medical Assistance came through, so hopefully it will be in the computer on Monday for all the various entities to capture and begin converging on Elias for discharge. While the target remains October 7th we remain true to our conservative optimism. Especially with the G-tube acting up again, that could now be the bent cog in the wheel. The next week promises to be a busy one and we probably will not know for sure until the end of the week if we will proceed with the target date. We will try to keep everyone updated as we have been, but if the next week is anything like the last few days that might prove a little tough. We will honestly do our best. By the way, a few people have asked if we will be continuing the blog when Elias finally comes home from the NICU...the answer is OF COURSE. There will be many more exciting tales of progress with photos, videos set to music to make you laugh and cry, and a few other surprises we are crafting up. We enjoy bring you all these updates, but appreciate the fact that so many of you take time out of your days to read about Elias. THANK YOU ALL!!!
We do have some photos to share from the last week. There are a few of the new and not so improved G-tube as well. We hope, as always that you enjoy.