We had a great day. Jacob was really active. He walked back and forth
from the playroom a few times. He even ran to the toys which was not fun
trying to chase behind him with his tube drain. He rode a bike they had
in there, mainly wanted me to push him. He played with lots of toys,
colored and took a TON of wagon rides. Seriously this kid loves roaming
the halls in the wagon. It was so sweet tonight he we were going for a
ride and he would blow kisses and tell all of the babies night night.
The staff here loves him and waves to him as he goes by.
He drained about 90cc of fluid total yesterday and has only drained about 30cc all day today. If Dr. Spray (His surgeon) gives the ok they will be removing that tube tomorrow. Then if all goes well he will be here maybe two more days to make sure the fluid stays gone and for us to get all of his medications sorted out for home then we may be able to go home by Wednesday or Thursday! His sodium was a little low so they started him on that today. He is on Lasix and aldactone for diuretics but I am not sure he will go home on both. He is also on lovenox shots but they may switch him to coumadin before we leave.
Other then getting this tube out and waiting a day to make sure the chest x-ray continues to look good he is ready! He is eating like normal. Still throwing up some but it only when he gags on something. Hopefully that will get better with time. His gag reflex is sensitive since the vent from surgery. It is getting better and they are not concerned. He is eating and drinking like a champ. The docs all said that his levels showed he was borderline for the Chylous effusion but since he was eating more and it was actually getting better not worse they didn't think he needed to go on a low fat diet. Actually today the fluid has gone back to Cirus and looks really clear which is good. Still we will need to watch for signs at home to make sure it doesn't come back. Signs would be low sats, respiratory issues. They could do a chest x-ray at our local hospital and if it was really bad we could always go to Cincinnati Children's for a chest tube if he needed it. But we will be PRAYING that it is gone for good and once we are home we can stay there.
His incision looks great. There are some spots that don't even have scabs anymore. We kept it covered longer then usual because he was picking at it. I think it looks awesome!
He drained about 90cc of fluid total yesterday and has only drained about 30cc all day today. If Dr. Spray (His surgeon) gives the ok they will be removing that tube tomorrow. Then if all goes well he will be here maybe two more days to make sure the fluid stays gone and for us to get all of his medications sorted out for home then we may be able to go home by Wednesday or Thursday! His sodium was a little low so they started him on that today. He is on Lasix and aldactone for diuretics but I am not sure he will go home on both. He is also on lovenox shots but they may switch him to coumadin before we leave.
Other then getting this tube out and waiting a day to make sure the chest x-ray continues to look good he is ready! He is eating like normal. Still throwing up some but it only when he gags on something. Hopefully that will get better with time. His gag reflex is sensitive since the vent from surgery. It is getting better and they are not concerned. He is eating and drinking like a champ. The docs all said that his levels showed he was borderline for the Chylous effusion but since he was eating more and it was actually getting better not worse they didn't think he needed to go on a low fat diet. Actually today the fluid has gone back to Cirus and looks really clear which is good. Still we will need to watch for signs at home to make sure it doesn't come back. Signs would be low sats, respiratory issues. They could do a chest x-ray at our local hospital and if it was really bad we could always go to Cincinnati Children's for a chest tube if he needed it. But we will be PRAYING that it is gone for good and once we are home we can stay there.
His incision looks great. There are some spots that don't even have scabs anymore. We kept it covered longer then usual because he was picking at it. I think it looks awesome!
He has been laughing and smiling all
day. We all can't wait to get out of here! Today I have noticed his lips
looks so pink. People always say post-fontan the kids look pink but
Jake was never really "Blue". Today I really noticed a change. His lips
looked so pink and his nail beds are also less purple. His oxygen has
been staying around 88 which is great. It will get higher as his fenestration closes.
So the plan for tomorrow is to take off the dressing from the last chest tube and hopefully get out his other one. Then start planning to transition him to home meds and get out of here!
Thank you for the prayers, keep them coming. We are in the home stretch!!!!
So the plan for tomorrow is to take off the dressing from the last chest tube and hopefully get out his other one. Then start planning to transition him to home meds and get out of here!
Thank you for the prayers, keep them coming. We are in the home stretch!!!!
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| Chowing down on pizza after the docs said no low fat diet lol |
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| Best Medicine: Hanging out with Aidan |
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