Well, my week just went from average busy (2 hospital visits / week).......to insanely busy!!!
We were told this morning that Claire has acute rejection in her kidney. They found this as a result from her biopsy on Friday, however it is not connected to the BK virus. The result of determining if the BK virus is out of her kidney was not back yet as of this morning. But whether it is or not, her kidney is rejecting and needs to be treated. Treatment for rejection is done through an increase in her immunosuppression drugs. She has to go in for the next 5 days in a row to get a high dose of IV steroid (prednisolone) through her catheter. After that we will taper down her oral steriod over the next few days. We are also increasing another one of her suppression drugs. So whenever her immune suppression drugs are increased, she is at a higher risk of infections/virus/sickness...so hopefully she stays well over the next little while. A follow-up kidney biopsy will take place following the treatment.
Oh man. It's good to know...but just stinks that that's the news we have to know! This little princess certainly has quite the story to tell.
And of a most important note, she is (basically) potty trained!! She's not super good at telling us "I have to go potty" and getting herself to the bathroom, but when we watch, remind, and make her go every hour or so, she does great! She's only had about 1 accident / day over the past few days, but didn't have any today. She does especially well when we're out in public. The accidents she has are always when she's busy at home or outside playing. But she'll get it. It will just keep getting better and is so nice to have the worst part of potty training over. She likes being a big girl!!
Benson has a busy hospital week too. We are nearing the end of the study he's been doing with the oxabact medicine. This week he will have blood work, a kidney ultrasound, random urine collection, and a visit with the doctor. Next week we will do his final 24 hour urine collections for 2 days in a row...and then he'll be done with the study medicine. We don't know any results yet from the study as a whole, but after everyone finishes the study, they will evaluate the final results and let us know how it all turned out.
Field trip with Benson and his class to the fire station tomorrow, Claire's joy school friends at our house Wednesday morning, temple Wednesday night, multiple hospital visits every day, and one more week that will zoom right on by!!! I don't know if 5 weeks is enough time before the new little one arrives! I'm thrilled and excited, but still have a lot I want/need to get done before life changes for all of us on a whole new level!!
5 comments:
Wow, Natalie. The baby is coming in 5 weeks?! I cannot believe it is already time! Oh, and Claire . . . we will keep praying. A LOT. I'm so impressed by your attitude. It makes me think of Nephi and what our bishop taught on Sunday. He talked about how Nephi didn't especially have crazy, amazing boat-building skills, but Heavenly Father commanded him to do it . . . So what does he do? He doesn't ask how to do it or list all the reasons why he cannot do it. Instead, "Lord, where may I go that I may find ore to molten tools, etc, etc? That's your attitude with Claire's health issues. Rather than focusing on the why, as many do, or the how, you just trust the Lord and you go with the flow that He wants for you. Your little family has taught me so many lessons about faith and love and family and I just love you guys. Thanks for tutoring me in the ways of righteousness. You're wonderful and we love your family.
NAT! DARN DARN DARN. I hope the increase in meds help and that her tiny kidney can hang in there. My goodness. You guys are all troopers. Good luck with the busy week. Hang in there friend.
OH MY! That is tough news! I hope that the meds can help her kidney!!!! It's times like these that make me wish we lived close by... I would love to help you with ANYTHING!! Let me know if there is EVER anything I can do from here!!! We love you guys!!! You are constantly in my thoughts & prayers!!
PS... 5 weeks?!? How did that race by SO FAST?????
It is hard to believe that in 5 short weeks the baby will be here.
Good news that Claire is potty trained. That is great.
Not great news about her kidney. You certainly have a plate full. Our prayers and support are with you.
Let us know what we can do to help. Remember the housecleaning offer.
Love you all very much
You truly are as "Job". Just move forward and do as the Lord directs. What a great teacher your family has been to the hundreds of people who read your blog "daily"! How I do love you all and keep everyone in my constant prayers (and on the prayer roll in the temple). I fervently trust the Lord will watch over this little angel and strengthen her kidney, but not without our faith, trust and prayers! What a sweet blessing that she is potty trained - that will be one less bag you'll have to tote to the hospital each trip. I know the next 5 weeks may at times seem to be going slow - but with all you have on your plate I know how fast they will fly. May the blessings of the Lord continue to be with you and guide you in all things is my constant prayer!
Love to ALL!!!
Grandma
Post a Comment