It's a Good Day!

Sorry we missed a day of updates. I took Kyler and went home on Sunday night--the first time I've been home in over 2 months! It was fantastic, even if it was short-lived. I spent the night there and took Kyler to two of his therapy appointments on Monday morning before driving back to Palo Alto on Monday afternoon.

While I was gone, Greg said Caden did really well. The girth of his waist went down a lot and he continued to be weaned on the nitric oxide and ventilator settings. The plan was to get him completely off the nitric oxide and get the vent rate down very low so they could extubate him on Monday or Tuesday, depending on how he tolerated the changes. He did very well with all the changes so that was great. Unfortunately, one of his peripheral IVs went bad and they had to replace it. Because babies with cardiac problems are often "hard sticks", it took them over two hours of using him as a pincushion before they were able to get another line in. And, the sad part about this, is the only place they could get it was in his head which meant they had to shave the majority of his hair off the right side of his head. Poor baby!

He continued to do really well all day Monday and they also started reducing other medications he was on as well. So, by Tuesday morning, they extubated just before 8 am and he did great. His respiration rate is way down from what it was before surgery which is a good thing. And, his girth this afternoon was down to 33cm. That is down over 5cm from Saturday! Great news for him. And, his bowels were working well as he was moving stuff through and out. This is another very good thing.

The pediatric surgeon came by to look at him this morning and was very happy with what she saw. The skin infection around the g-tube is much improved as well with only a little redness remaining. So, instead of a 14-day round of antibiotics, she said she would be happy with a 7-day. So that means this Friday he will be done with those. And this afternoon they removed the stitches holding the g-tube in place.

Caden looks so good today. We are able to hold him again and did so for quite awhile this morning! Since the last of his chest stitches came out on Sunday, his chest looks really good. It's amazing the difference. He just looks really good all around. And, he was also happily sucking on his pacifier. We hope this sticks with him and he is able to keep sucking. The other thing is when he cried he was actually making a little bit of noise. I do mean a “little” bit. But it is more than he was making before surgery. So, we are hopeful he might get his voice back earlier as opposed to later. It sure would be a huge relief for me if he has a little bit of a voice when we go home. But if he doesn't, we will work with that.

We are so happy right now because it seems Caden has made a turn in the right direction and hope we it continues. If everything goes smoothly, we are hopeful we could be home by the end of next week. It just seems like he is more comfortable and is handling changes better than before. If it continues, we should be in good shape. We are so anxious to get home and get into some kind of normal routine for our family. Thank you for your prayers as Caden progresses. We want him to be stable enough to get completely off the oxygen nasal cannula and settled into the medications he will be on when we go home. Once everything is stable for a few days, we should be able to go home!