Well we started out this morning thinking we would be out of the hospital Monday but now they have changed their minds and it looks like it will be tomorrow. Bart and I have been getting crash courses in NG tube feedings and bladder flushes. I think we should be able to handle it, nothing too bad. Nan, NP came and pulled Gabrielle's left kidney stent this morning. Gabby and I took a wheelchair ride this afternoon to radiology for her to get a renal ultrasound. Nan came back to the room later on and said Dr. Alam was pleased with what he saw and everything looked good. We know that he is cautiously worried. He has repeatedly told us that Gabrielle is one of the most difficult cloacal exstrophy cases he has worked on. The opening in her pelvis and abdominal wall was so large it took a lot of work to close it. Also in each case you never know where a child's organs may be. Gabby's stomach is out of place a little bit because her right kidney is around her pelvis instead of up high like it should be. He says everything is really tight in there right now but that with time things will loosen back up a little bit and she will become more comfortable. I asked him yesterday about her risk for bladder infection because in some of these children they keep chronic bladder infections. He said that in the cases that he takes care of that he has yet to have one with a bladder infections, knock on wood :)! The only reason we might be at risk is because we might have to cath her. Dr. Alam explained to us that during the surgery he discovered that she didn't have much to work with as far as urethra coming from the bladder. He made do with what he had so it is a little narrow and a little shorter that he had liked. If it is to narrow for the urine to drain on its own then we may have to cath. The urethra just has to last her a few years anyway until she has her next bladder surgery to put in a Mitrofanoff. A mitrofanoff will be a permanent cath place that she will use for the rest of her life.
As for her tube feeds things are going well with her tolerating the amount that they want her to get each day. We are tube feeding her through the NG for 12 hours each night and then resting her during the day so she has time to eat by mouth. As her eating by mouth increases then the amount we feed her at night through the tube will decrease. Home health came by today and explained how to use the feeding machine that we will be sent home with. Bart and I can't wait to get out of this place and I now Gabby will perk up a lot when she gets out of this room. Please continue to pray for Gabby's nutrition, that her appetite will increase so that she can get rid of the NG tube soon. Also please pray that once we leave the hospital that she stays infection free and healthy until time to have her ex-fix removed.
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| This was from the first day she got out of the bed... family snuggle and nap time :) |
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