Jacob had another great day full of smiles. His x-ray looked world's better today. Not much fluid at all on his lungs anymore. His heart echo also looked really good. No signs of any problems with the pulmonary veins. His heart function was the same as it was prior to surgery so he will still need to be on Captopril due to it being on the lower side of normal. Overall they were very pleased with how good it looked.
Jacob is still on oxygen. We are currently trying to ween him off. He was on 2liters but is now down to 1 liter and will go down a little every 4 hours as tolerated. The doctors all agree that he does not need to be here just for oxygen and if weening does not work he can go home on it. I hope we can get him off of it though because he hates it and constantly pulls it out of his nose.
His "Unique" breathing has come back. His strider was louder today and he was breathing heavier. Earlier in this blog I stated it was from a floppy esophagus, it is actually a floppy trachea. The name of this diagnosis is Tracheomalacia. It is due to the issues with his lungs that occured at birth and the vent being in so long.
Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth.
He is doing great taking the bottle. The last feed he took 50ml by mouth. Basically with each day feed I am giving him 20 minutes on the bottle. Whatever he does not take by bottle goes in his tube. He LOVES the bottle and goes to town. He is doing so well. His doctor said it is easier for him now that the shunt is gone. They also said that if my speech therapist at home oks it then we can try baby food in the coming months. His speech therapist here said that we can try it out and see how he does but its easier for them and he would probably do well.
Overall everyone is amazed at how great Jacob looks. His color is good, he is still gaining weight really well. He is my hero. To look at him you would never know he had surgery 5 days ago. He acts just like the Jake we all know and love.
I should have a better idea about when we will be going home after rounds tomorrow. Today they acted like we could be discharged tomorrow or Wednesday. Most likely Wednesday. They usually take a while to discharge you so we would spend the night at the Ronald McDonald House and leave the next morning. We will stay in Morgantown on the way home (Kim, I will call you when I know what day we will be heading through there!) and get home the following day. So if all goes to plan we may get home sometime on Friday.
I will update tomorrow but for now THANK YOU ALL for the prayers and love you have sent our way. Jake is living proof that they are heard.