A brief update with nothing but the facts as they are tonight:
Blood pressure is still all over the place. One hour up, the next down, but mainly up. Extremely frustrating and definitely taking a toll on all of us. We often feel that we are put in a position of having to decide on med changes - a position that none of is comfortable with being in. We have gone from "Intensive Care" to "Parent Care."
Kidneys are still not functioning, but Alyssa has produced some "pee." Nothing to get excited about at this time, but it is a change in the right direction. Whether or not Alyssa's kidneys will again perform their bodily functions is yet to be determined. If functionality is not regained within two months of the initial failure, they are determined to be in permanent renal failure status...Alyssa is now at five weeks
The plan is to get three plasmapheresis treatments next week, followed by two the following week.
Dialysis treatments will remain at three per week indefinitely.
Alyssa's three primary physicians return from vacation next week and we plan to meet with all of them.
No word yet on results from the genetic testing being performed at the University of Iowa.
She remains on 12 different medications that are taken between 6:00 AM and midnight.
Her new renal diet is a killer - no pizza or mac & cheese - Alyssa favorites.
Despite all of the above, Alyssa is trying to remain optimistic, although she's had a few difficult moments the last couple of days trying to deal with enormity of it all. She hasn't had any easy days lately and it's beginning to take a toll on her.
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It was so great having a family gathering today. Hopefully it cheered you up...I know I loved it. You looked fantastic!! It's nice to see the whole family at your house with you ...and not the hospital!
ReplyDeleteWhen things look gloomy, try to remember how far you have come. You really have made lots of progress but it's ok to allow yourself some "down" times without feeling guilty. You have done such a fabulous job staying optimistic and positive. Remember, Gramma would say, "sometimes you just need to cry"! It's one of our female relief mechanisms!
I lost my train of thought during our prayer today. When talking about the mountains we have to overcome in our lives, Pastor said when your confronted with that mountain, don't give up and back down and wait at the bottom because it seems impossible to climb it. Victory is on the other side and we CAN make it! We will NOT give up no matter how big that mountain looks to us right now. We are climbing together...all your family and friends that love you and are in constant prayer for you.
Have a good day tomorrow. Love you sunshine!!