Wow, Ry really gave us a scare on Sunday. It's amazing how quickly she could go from very stable and doing quite well for two weeks, to a completely opposite state in less than 24 hours. This is the scenario that we've been prepared for. And it may take a couple of weeks to get her back to a happy place.
We do not know what caused her kidneys to literally just stop. But that's what happened. The team had just discussed with us that they felt it was time to back off of her diuretics because she had started to get a touch dry. But labs were still completely normal. 24 hours later, her lab numbers all doubled and her kidneys had shut down. On top of this, we were in the process of transitioning her pain medication from oxicodone to methadone. There was a little overlap to make the transition a smooth one. However this is not an ideal time for your kidneys to stop working. The drugs just stayed in her body and weren't being metabolized or processed. So for 24 hours Ry was in practically a coma-like sleep. We moved down to the ICU, met with the nephrologist immediately and he all but insisted we took Ry to the OR immediately. This urgency was based on her potassium levels being dangerously high. At her level, a normal person would go into cardiac arrest. Our theory was that the VAD would keep that from happening so we hoped to buy just enough time and pray her kidneys would wake up. They did. Sunday night at around 7:00 we had our first wet diaper. And we were back in business.
So now we are trying to get back to her proper balance between too puffy and too dry. We're still working on it and as I said it may take another week or two. We hope that if she is still stable (maybe not perfect, but stable) for the next few days, that we could return to the 8th floor. We'll know more later this week.
Today was a rough day. She slept a lot and was not herself when she was awake. She is already sleeping and I have a terrible feeling that tonight might be a miserable night. I sure hope I'm wrong and she can sleep.
We appreciate you continued prayers. Its so hard to see her take such a step back. We hope she's feeling better soon.
11 comments:
We hope she feels alot better soon! Tell RyRy that Lola sends big hugs & kisses! We are praying everyday!
Love ya'll, Maurine & Lola
What a scare! We continue to pray for her steady improvement and for that miracle heart. All our love and support for you all.
~Mike & Judy Rice
An amazing story with a most welcome ending. Must never cease from praying or taking for granted the blessings of the day. We pray also for your and family's stamina and faith.
I became aware of your story recently through "Children's Med Dallas." My son, Anthony,receives all of his cardiac care there as well. After he had a transplant evaluation this spring,I have been soaking up all the information I can about life on "the list" as it may be our own path in the future.(They decided not to list him for now, choosing instead to monitor him closely.) Thank you for being willing to share your story so openly. It has touched and encouraged me. You all will be in my prayers. God is faithful.
Glad that she did not have to head to the OR and hopefully she can find her happy medium with all the puffy and dry issues. She's one tough cookie, obviously she gets that from both her parents. We're thinking of you constantly...Even though we won on Sunday maybe she just got nervous about our previous track record on TV and wanted to make sure she didn't see the Aggies play a bad game :).
HEY ANDREA,
WE ARE STILL PRAYING FOR YOU. WE ARE GLAD THE KIDNEYS PULLED THROUGH. RYLYNN IS SO STRONG, JUST LIKE HER MOMMA, MISS YOU MUCHO- bRIAN & CcRISTINA
Praise the Lord for answered prayers - we will continue to pray for Ry to be back to her happy place in the next few days. Praying for that heart to come soon for her. God is good and faithful. Every day is a blessing; continue to trust in God. :)))))
Love, Karen and Jeff Carawan
We are still praying for you all. Linda and Gordon
Ry is like the Energizer Bunny - she just keeps on going and doesn't give up! Bless her for being so courageous! She stays in our prayers constantly as do you and Gilly as well. Hope she can find that delicate balance in her little system soon and doesn't have any more glitches.
Our Love,
Linda, Carley, Pat and the boys
Andrea, you are always so positive in times of turmoil. I admire your poise even though I'm sure at times you want to just breakdown. This road is very tough!On you, your husband & family and most of all little Rylnn...she is such a fighter and I will continue to pray daily for her angel heart, she really needs it soon! Keep your head up, you are such an AWESOME MOM!!!
It is hard for me to sit here trying to decide what to wear or eat today when you and sweet little Rylynn are going through so much each day. You are totally awesome and I admire your strength and faith so much. Rylynn is truly a little warrior and hopefully she will get through still another obstacle and be back on the road to feeling and doing better soon. As always, our love and prayers are with you all. Stay strong and God Bless
Aunt Dorothy
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