We are on day five of the Prograf and so far, so good. We had one vomiting episode on Saturday (all over Nee and Pa's couch), but I am pretty sure it was due to the taper of the Prednisone again. He got very little Prednisone on that particular day, and ate a lot more than usual. Luke is not yet responding to the Prograf, but the Nephrologist says it could take up to two months.
The biggest obstacle for Luke is the bloating and swelling. When he reaches a certain weight he gets very uncomfortable and irritable. It is hard to watch him try to get on the couch or play with his trains on the floor, because he cannot bend and turn like he used to. This is when I give him the diuretic. The diuretic is very strong and makes Luke urinate out four pounds of fluid over night! When he takes it I need to change his diaper three or four times throughout the night to avoid leaking on the bed sheets. Then, when he gets down to a certain weight the diuretic needs to be stopped to avoid dehydration. If he looses all the weight over night, or too quickly, he could experience a type of shock due to the rapid loss of fluids. Once the weight comes off Luke feels like a million bucks and will run and play, get down on the floor with his trains, and take part in his new favorite thing to do....camping in his tent. The diuretic can not be used as often as he needs it, so unfortunately I need to let him reach that high number on the scale before I can administer relief.
I will continue to keep you all posted. As much as I love to write, it is a good thing when there is not much to say!
Please pray for Luke to be strong and continue to breeze through whatever may come next.
"May every sunrise hold more promise, every moonrise hold more peace."
-anonymous
The biggest obstacle for Luke is the bloating and swelling. When he reaches a certain weight he gets very uncomfortable and irritable. It is hard to watch him try to get on the couch or play with his trains on the floor, because he cannot bend and turn like he used to. This is when I give him the diuretic. The diuretic is very strong and makes Luke urinate out four pounds of fluid over night! When he takes it I need to change his diaper three or four times throughout the night to avoid leaking on the bed sheets. Then, when he gets down to a certain weight the diuretic needs to be stopped to avoid dehydration. If he looses all the weight over night, or too quickly, he could experience a type of shock due to the rapid loss of fluids. Once the weight comes off Luke feels like a million bucks and will run and play, get down on the floor with his trains, and take part in his new favorite thing to do....camping in his tent. The diuretic can not be used as often as he needs it, so unfortunately I need to let him reach that high number on the scale before I can administer relief.
I will continue to keep you all posted. As much as I love to write, it is a good thing when there is not much to say!
Please pray for Luke to be strong and continue to breeze through whatever may come next.
"May every sunrise hold more promise, every moonrise hold more peace."
-anonymous
Angela, you and Sean are in our prayers for strength, Luke for a speedy recovery and the baby for health. Love, Craig & MaryAnn.
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