Friday, May 4, 2012

Feeling Better!

Jacob had a rough night and was up most of the night having withdrawal symptoms. THey had to increase his oxygen overnight to help him since his body was having withdrawal but have been slowly decreasing it and weening him today.

He is going to have a scope on Monday. They are checking to make sure there is no swelling in his airway since removing his vent. If there is they would just put him on steroids but they said he looks and sounds great so they don't anticipate seeing anything. This will also allow them to come up with an aftercare plan. We will most likely have to come back in a month for another scope and then another at 3 months. He will need a 6 month scope but we hope to be able to do that one in Cincinnati since it is closer.

As far as this stay we just have to ween his oxygen and some of the meds and work on eating by mouth. We haven't been able to consult with speech yet because he is on high flow oxygen. As soon as they can get him to the regular nasal canula then he can start working on feeding. Right now he is  getting continuous feeds of Pediasure through his g-tube. He will most likely go home on Valium and Morphine so I need to get a weening schedule for him and may have to get at home nursing. They told me I may need it because he will still a lot of work to take care of him. I kind of chuckled and told them he has always been a complex baby and this will be nothing compared to coming home post Norwood. He was on 8 meds, oxygen, pulse ox, continuous feeds, gtube issues and doctors appointments daily. I don't like having to ween him off meds and deal with withdrawal however I will get a schedule from them and learn just as I have everything else. You kind of become a nurse when you have a hypoplast so I have learned to adapt and do what it takes to keep him healthy.

Reading his book!
Jake has been so much better today. He is still puffy but he is so much more alert. He has been fighting the nurses more which is a good sign and is playing with his toys! He has been doing puzzles and loves flipping through his book. He is even pointing at the pictures and pushing the button that says what it is. He wasn't even doing that before surgery. I think his hearing is probably so much better now that he doesn't have his noisy breathing blocking the sound.

Aidan, Andy and my mom left today. It was so hard saying good-bye to them. Aidan cried and it broke my heart watching how sad he was. My mother-in-law is here with me helping me out. Hopefully we will be able to go home in a week or so and we can all be together as a family.

Thank you for the continued prayers, they are working!


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