Yep... this is about how I feel too!!!!!!
We made it through the weekend! LOL!!!!
I was on the phone most of the day today with all sorts of people who will now join our chaos at home. I started out with a call to the GI doctor and the Dietician working with Josh through the feeding clinic. I was feeling a little overwhelmed until today when I finally got answers and know where we go from here.
First of all, the NG tube is going to be around for awhile. Soon we will be having a G tube placed, but for now the NG tube is the way to go. For those of you wondering.... the NG tube goes in his nose, down his throat and in his tummy. The G tube is surgically placed directly into the stomach. They don't like to leave the NG tubes in for longer than a few weeks, so that is why we will be going to the G tube after some tests and x-rays are done to determine the best placement.
The Doctor upped the amount of formula a day and got us going with Home Healthcare. They will be coming tomorrow to show me how to replace the NG tube in case he pulls it out, or it is time for a new one. That was relief. At the hospital they told us I would have to go back to the ER to get it put back in. Plus his nurse will keep track of him, and we will get all of our supplies through them for his feedings. They are hoping to change his formula, but we are waiting on an answer if the insurance company will cover the cost.
We also had a feeding pump delivered tonight. It is an interesting contraption. It will do overnight feedings so we don't have to do so much during the day. We aren't positive on when or what we are going to do, we need to get more supplies and get going on our new feeding schedule. But it will be nice to not have to sit around and put formula down his tube all day. So when his nurse comes tomorrow, we'll get going on that.
All in all it has been a crazy and interesting weekend for us. Josh is doing so much better now that he is getting fed well. He is happy, running around all the time and his color looks better. So we are really glad he is better. It may not have been the road we thought we would take, but the end result is the same.... a happy and healthy Josh.
1 day ago