Day 30

Derc taking care of Kale's 2pm cares - almost made it through the whole poopy diaper this time....so close!

Naked time...he's embarrassed

Big stretch!

Well, Day 30 is a stable day.

The good news: The Dr. decided to take him off the Nitric treatment completely today and see how he responds. so far he has done pretty well, and he's been off it now for about 4 hours. and he's still at about 28% oxygen. His gases have been a little bit up and down today, but that's to be expected with going of the Nitric treatment. He's still on the steroids, and they have begun to slowly ween him off of those and will continue to ween him very slowly over the next week or two. The Dr. said that his lung x-rays looked significantly better today compared to Monday. Woohoo!! (Amy, did you just do a kick?! Haha!) The Dr. did say that he definitely has some significant lung disease, but that will probably be the case for a while, but we're still happy he has improved over the week.

He has been tolerating his feeds well and is at full feeds at 16 mls every 3 hours fortified at 24 calories. He tipped the scales today at 2 lbs. 5 oz. The Drs. would like to see him gain .5-1 ounce per day now that he is consistently on full feeds. We'd like to see that too! Kale's kidney function still looks good as he is consistently having wet and dirty diapers.

We got to speak with the Dr. today for a bit, and he seemed to be happy with how Kale was doing. He said that compared to other 24 weekers he's doing pretty well even with his heart condition. We of course are happy to hear that but we're not surprised with how tough Kale has been. We're still crossing our fingers that the weekend goes smoothly and maybe Monday he will be on a new vent (one that allows him to be held every day).

The not so good news: His blood sugars have been really all over the place today, which the Drs. told us to expect since he's on the steroid treatment. His blood sugars were anywhere from 306 to 28 today. They have controlled it with insulin and sugar drips into his IV, so we're hoping this levels out a bit.

We're happy to report that that is all for the 'Not so good news' portion today!

We hope everyone has a fantastic weekend and thanks for checking in on our little guy!! We appreciate all the support and prayers!