...Docs decided to try Clay on CPAP trials for 15 minutes, every 6 hours. The first trial was yesterday & they ended up leaving him on it for 30 minutes because he didn't even seem to notice the switch! I was at the hospital last night for the second trial and I couldn't tell anything was different...Clay was still grinning and playing and talking :)
...Back a few months ago, when we tried Clay on CPAP, it was pretty obvious he was not comfortable. But the last time, he was left on CPAP for good, instead of doing a trial for a few minutes...he lasted almost 48 hours before his left lung collapsed. So, I am glad that we're just doing trial runs, instead of switching all together. I'm hoping and praying we are moving forward & we won't have any set backs! Please pray, too!
..It's still obvious Clay is breathing much more comfortably than he was before his second repair surgery. He has been on 21% oxygen for nearly a month. And the fact that he has been intentionally talking around his trach is wonderful! When we are able to hear him 'talk', that means he has an air leak & he's not getting all of the pressures that the ventilator is giving him...but he hasn't noticed the air leak and has been talking up a storm, happy as can be ;) His voice is like music to my ears! And it's even cuter to watch him--he concentrates so hard as he maneuvers air around his trach to hit his vocal cords...I am so proud of him for learning to do this. He is such a smart little guy!
...We've also made our way up to 15mL/hour of continuous feeds through his G-J tube. We've had to go slow because not eating for nearly 2 months took a toll on the lining of his small intestines. Dr. Draus could see with the scope during last week's procedure that a lot of the villi in his intestines appears to have sloughed off. The villi is responsible for absorbing nutrients, so it's important that they build back up--otherwise we'll face different problems. Of course, if the milk isn't getting absorbed, it will just run straight through him & come out the other end--they call it 'dumping'. So far, so good--no dumping! They say the closer we get to the 30mL/hour mark, the more we'll be able to tell if he's absorbing or dumping. There's no way of predicting how quickly the villi will build back up in his intestines, so please say lots of prayers for Clay and his intestinal villi. We need them to absorb all the nutrients so he can get some meat on his bones! Poor little guy is getting scrawny. He's still getting my breast milk, so hopefully it will be just what his body needs to grow big & strong!
The best thing of all: Clay just acts like he feels good. Before, when we were trying to wean on his ventilator settings, he would get grumpy & throw some mean fits--those frantic, air hungry fits, that I do not miss AT ALL. Now, Clay is just so happy at the time. He is just a little ray of sunshine, brightening everyone's day. I am so in love with my little stinker.
..And so is everyone else in the NICU! I don't know what everyone will do when we go home. I will certainly miss all the friends I've made, too. I am so so thankful for all of them and their love & support they've shown our family.
But I will be so glad when the day comes that we can all be together with Clay in our home. I know how hard this is on my mom & dad & sister, and all of Eric's family, too. I update everyone as much as I can, but I know they wish they could be here in Lexington, spoiling the little feller too. One day, family! One day!
For now, keep the prayers & good vibes coming! Lots of love to you all!
|And Clay loves you, too! :)|