Micah has been doing well. Over the last two days we have worked him up to the feeding level he needs to be at. He's been at this level for 24 hours. Not only have we done this but it's happened without any complications. His body has been able to keep up with the volume and we have not seen any wretching (dry heaving). We are so thankful this progress has been uneventful. Our next plan is to try him off the feeds for 4 hours and on for 20 hours. While he is off the feeds we will feed him by bottle to keep up his skills. Hopefully as time goes we will be able to have him off for 12 hours during the day. Basically, we will have X amount of calories we need to get in him in a day. Whenever we do that is based on his tolerance for the volume needed and balanced with the time he is off the tube feeding.
We have also learned how to vent or burp him through his tube. At first it's weird and kind of gross but really how much easier than waiting for gas to pass. I know there have been countless times with our girls it would of been nice to just "vent" them to eliminate that factor as to why they were fussing and screaming. We have a lot to learn, absorb and apply about the g-tube in a short period of time. As I've said that I'm looking forward to our new normal whatever that may be...this is the first definite new normal item. We can count on always having the g-tube as a part of our lives. There is a chance he will someday be able to eat on his own, we are just a long way from there at this moment.
In the last couple of days several of the minor annoyances have been eliminated as well. A couple of nights ago Micah's sixth IV got kinked and went bad. A nurse worked very hard to save it and then it fell apart. Little did we know this would work in our favor. For Micah to have the IV with nothing going in it continuously they have to flush it every 4 hours to keep it open. This is how we knew it went bad, it would not flush. When the IV would flush it was very uncomfortable for Micah. At this point the only reason he had it was to give him his morphine. So we discussed our options and decided to stop the morphine, keep up on the Tylenol and have his Valium changed to a form that can go though the tube. Once this was in place we were all good. God's perfect timing is also in the IV's going bad. Awesome!
I'm also very excited that the doctor wrote orders for his vitals to be checked by 10pm and then not again until morning! This means there is no reason for him to get woken up in the middle of the night. This also translates into us not getting disturbed as well. What a difference a good nights rest makes.
The best thing of all is that we are getting our happy boy back and he's even happier than before. He is so hilarious! If you have met him you have probably seen his cute smile, his bright eyes and heard his belly laughs and giggles. He has come through this hospitalization even better in so many ways. He loves to play and interact. He's also shown great interest in music. When we have a CD going he will listen closely and sometimes he will start babbling with it as well. It warms my heart to see him thriving. It's amazing what a full tummy can do along with a good nights restand of course great medical care.
We are scheduled to go home early Tuesday morning. We have a 10am appointment with Home Health Care to get his gear set up. Your continued prayers are coveted as we are in the home stretch of our stay here and as we transition home.