Rockstars or Divas
Honestly, these kidneys…… Temperamental is all I can say. Last week they were rock stars and this week they are total divas. Throwing tantys and not working! The three daily doses of lasix over the weekend did nothing. So today we are trying another med Zaroxolyn to see if will help them. Next stop is a lasix drip and then DIALYSIS! Yuck. We are really hoping the meds do the trick. We are nervous about them and can’t blame the high FK level for their problems like we could last week. The surgeon is new this week and agreed with me, thank goodness.
Her WBC is around 33 today which isn’t good and really no great answers as to what is causing the fevers. Her blood sugars spike in the middle of the day and she has to get a jab of insulin which she HATES. Although we tried her leg this time and that seemed to be better.
There are a lot of ticks in the right boxes though. No TPN!!! Her heart rate and BP are great. She is sitting up and did great with her PT exercises today. She had music and preschool as well. She isn’t super happy but is managing smiles.
Asher had a rough morning and more temps and D&V. Poor little dude. I wish I was home with him but he is doing great with Daddy. He asked Hamish for mac and cheese so hopefully he keeps that down.
So we are feeling a bit sad with the current situation. Thanks for your prayers- we SO appreciate them.
18 Responses to “Rockstars or Divas”
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# 7 Jun at 3:30 pm
Oh what a roller coaster ride this is for you all stay strong and as you know you are not alone in this Prayers and thoughts to you all
# 7 Jun at 3:39 pm
Hope the kiddies feel better soon, sending more prayers your way
# 7 Jun at 3:41 pm
May the Lord give you guys the physical, emotional and mental energy you need today with both of your little ones under the weather. I’m glad you can try different meds for Aria – nice to have some options. Big hug. Jo
# 7 Jun at 4:15 pm
Thinking and praying for you today
# 7 Jun at 4:51 pm
Hi Aria,
God is sovereign over our lives dear one. Smile dea one and lets rejoice at small blessings and great blessings coming your way right now where you are, we love you and thank you Papa!
God loves you I love you and everyone loves you. Cheers Aria!!!!!!!
Thank you little kidneys for working soon and Papa please take away all thats causing her fever and WBC better go down amen. God’s much blessings and peace amen amen amen. Love you all guys, Noa and family.
# 7 Jun at 4:53 pm
i havent commented for a couple of days. but am continuously thinking of you guys and hoping that aria doesnt have to go on that dreaded dialysis machine! she is an absolute marvel iv jus read back on all your may entries. you all continue to amaze me and must know that although some of us dont know you personally we are all here to share your journey with you and care very much for miss aria and you family. i do hope asher is feeling better soon. sending hugs & strength xx
# 7 Jun at 5:13 pm
Sending prayers that the kidneys start working well soon and that Aria is in good spirits. Hoping Asher kicks his bug soon.
# 7 Jun at 5:20 pm
Extra hard with Asher being unwell and you having to stay well for Aria… praying still, daily…stay strong – you ARE strong
# 7 Jun at 5:41 pm
Thinking of you all. Kia Kaha!
# 7 Jun at 6:09 pm
Sending you a hug each along with our prayers.
“Strong in the strength he gives”
# 7 Jun at 7:19 pm
I wish I could give you a hug right now! My prayers are always with your family! I hope both Aria & Asher get better soon! God Bless!
# 7 Jun at 8:27 pm
Praying that new medication works on Aria’s kidneys so dialysis is avoided and that Asher gets better soon. Blessings,
Judy.
# 7 Jun at 10:15 pm
go away bugs! praying they go away and you and hamish don’t get them.
# 7 Jun at 11:02 pm
Oh dearie, sounds like you have stalled at the lights!!! They will surely turn green soon (give the word GO Green Dolly)!! Those kidneys sure are sulking & throwing tantrums. Sounds as tho the pancreas is also sulking.May more ticks in the right boxes appear soon.
Welcome ‘noodle’ ( tho may you soon be made redundant by Aria). Farewell ‘wiggle’ (thanks for your assistance in the past).
Anita & Hamish, I would like to say something that I feel dubious abt how to word for fear of offending or treading on someones toes, but I will try my best with words….
PLEASE PLEASE do not let the monster dollar compromise or procrastinate your decisions to seek medical help for you both & Asher as Aria depends on you all for her support & recovery so much. I can only speak for myself, but am sure many of your followers will agree…. If you get stuck by the monster dollars pls ask us for help as am sure the majority of your followers would happily donate & contribute to build up the kitty for these unexpected expenses that are bound to pop up.
It is probably ust as hard for you to ask but please do as otherwise we do not know. Prayer is powerful but sometimes we need to go that little bit further & take practical steps to help you along in this journey.
Love & blessings to you all
# 7 Jun at 11:16 pm
hang in there you lot-we are all still holding you up in prayer and we believe for healing and joy! – Jeannie
# 8 Jun at 1:13 am
praying the meds do the trick
and that your little dude is better soon
# 8 Jun at 2:20 am
Praying for both Aria and Ashie that tomorrow they will both be feeling a lot better. Love to you all & Praying the new meds work
# 8 Jun at 5:22 am
Praying for those kidneys to wake up and do their thing…. hoping Asher is on the up….and you have something surprising happen to make you smile that you weren’t expecting. X