Rowan is continuing to wake his digestive system up. We are waiting to see that all of the dye from his enema has passed through his system. Once his stool turns clear instead of the vivid green that is all the meconium left in there, they will start feeding him. He has still not thrown up.
Today he officially came off one blood pressure medication. Then he came of the remaining one in favor of a form of the medicine that he will be taking when he comes home. He will get blood pressure meds when he comes home and has been doing wonderful with that medication change.
The doctors have also begun to lower his ventilation settings on his respirator as well. He's been responding really well to that. We thought they wouldn't even start to lower his support on the machine for another week, so any small step there is almost like being ahead of schedule.
The amount of fluid coming out of his chest tube is still too much. It does seem to be going down really slowly, but not enough to know for sure that the fluid is drying up/going away.
Today we gave him a little plastic tube to hold and he waved it around for about ten minutes. I might see if I can find some wrist rattles for him tonight. He likes to move his right arm because it doesn't have any tubes in it. It is fun to watch him "play".
This evening he started crying and got really red-faced and mad. He was flailing his arms and legs and making angry faces...but none of his vital changed. His respiration rate and blood pressure were completely normal and his pulse went up just a little. After about 25 minutes he calmed down. He wasn't acting like he does when he's in pain. He wasn't squirming or writhing or squishing up his face real bad.
...I think he was throwing a fit.
Awesome.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
Sounds like you've had a good couple of days with Rowan. So great that your dad is there with you now and that you were able to see Evelyn. We continue to pray for Rowan's continued progress and for peace for you and Matt. Thanks for keeping all of us posted.
ReplyDelete~Debbie
Thank you so much for the updates on Rowan. As a heart mom, it is so awesome to hear the little baby steps that he is taking. And yes....i do believe he just threw his first fit!! Shows what a strong little boy he is!! God is Good! Blessings to all your family from our HEART FAMILY to yours!!
ReplyDeleteCarrie, Mike and Katie Cooke
Amazing! Throw more fits for your mama, k?
ReplyDelete