Bad Boy

This the outfit that Alyson gave him, don't you love
his eyes!!!!!!!!!!!!

Hello all. As you might have gathered from the title Jackson was a bad boy today. He learned a new trick. He pulled out his ET tube. In the long run it is no big deal. They simply reintubated him. They said it was a straight forward intubation and was done with one attempt. He also got a new feeding tube today. As you may remember from previous posts he was being fed into his small intestine to avoid reflux, which is common with CDH babies. They placed a new tube today from his nose into his stomach (NG tube). As of this evening he had not spit up at all!!!!!!!!!!!! This is great news, so far so good. They also check residual levels of the feed every four hours to make sure his body is processing what they are giving him. They take an empty syringe and draw out of the feeding tube to see what is left in his stomach. They want this number to be less then half the total amount of food he got over that four hour period. His residual levels this evening were very low!!!!!!!!!!!!!!! They also repeated the BNP ( heart function number) this number appears to be stable in the low 100s. Another echocardiogram was done yesterday and we got the results back today. All of the numbers that they look at with this test were in the normal range!!!!!!!!!! This is the first time this has happened since he develpoed pulmonary hypertension. They said it looks like the workload of his heart is also stabilizing. Basically all that means the Pulmonary hypertension is improving and his heart is not having to work as hard!!!!!!!!!!!!!!!!!! The goal is to now get to a point where they think the heart and lungs have stabilized, then start weaning his oxygen. They are going to do echocardiograms every other week and BNPs every week. So hopefully in a couple of weeks we will start to wean. He is also having physical therapy (PT) and occupational therapy (OT). Physical therapist are working with him on trunk and head control while the occupational therapist are working on sucking and avoiding oral aversion. The physical therapist are very impressed with his progress so far. I am going to post a picture of him sitting up assisted by a PT. The PTs are also using Kinesiotape on him to help his muscles. I am also going to post a picture of him with a giraffe, one of our favorite nurses, Emily, gave him. And another photo of him in a blue outfit that another one of our favorite nurses, Alyson gave him. Well I guess that's all for now.
Love
Adam and Kimberly

This is the giraffe Emily gave him.

He is swatting at the rings he loves this game. :)