A stay of….
……well, you know the word
Aria is still dumping 🙁 Â We have been managing it at home and replacing the fluid she loses with IV fluids. Â But last night it got to crazy high limits, 1200mls out in 12 hours. Â We are supposed to replace anything over 400mls in 12 hours.
We noticed that when she was in over the weekend for her UTI that her outputs dropped to 500 mls for 24hours. Â Nice! Â During that time she was on two antibiotics (ABX). Â They dropped one of them and since then her outputs have crept back up.
The plan was to raise this observation on Thursday at clinic and ask the team for more investigation as to whether it could be a bacterial issue rather than a virus. Â But today it couldn’t wait.
Neither could our pleadings to keep her home. Â Aria is actually really really happy and active and doing great! Â AND it was my birthday today and one that ended in a 0 so I didn’t want to spend another day in hospital with a happy Aria when we could manage at home. BUT with such high outputs we HAD to call of course.
Thankfully the team agreed on both plans and cooked up a really good plan.  Run labs, stop her gut feeds, start an oral ABX and start maintenance and replacement fluids IV- all at home!  Ok, so if this doesn’t make a difference then it will only be for 24 hours but for an extra day at home with a happy Aria we are going to take it!  We are so grateful that not only did they listen to us and the give the ABX hunch a shot, they were willing to work with us to keep Aria home.  Feels really good when your child’s medical team trust you and listen to you, which has only ever been our experience at home and here.
We are getting on weeks now battling this issue. Â Still we remain positive and hopeful that it will be resolved. Â It is really easy to let your mind jump to all kinds of crazy ideas but we are just resting and trusting that eventually this rock star gut will get back to rocking.
18 Responses to “A stay of….”
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# 26 Jan at 11:53 pm
Happy Birthday Anita. It’s wonderful the doctors listened and that Aria could stay at home. Praying this problem improves
# 27 Jan at 1:47 am
Happy Birthday Anita and great work with all the negotiations – you guys will need to become specialists in your own right.
Praying that the dumping stops!
In Christ
The Bracefields
# 27 Jan at 2:03 am
Happy Birthday Anita. Hope you have a lovely day with Aria home.
# 27 Jan at 2:21 am
Happy Birthday Anita. Hope you had a good time with both your children at home with you. Praying that ABX will do the trick and Aria improves before Clinic. Blessings to you all, Judy.
# 27 Jan at 2:38 am
Happy birthday Anita 🙂 So pleased that you get to spend it AT HOME with Aria, how special 🙂 Praying that Aria heals quickly and that this is soon all behind you. Blessings xx
# 27 Jan at 3:25 am
So glad you got to stay home- happy birthday
# 27 Jan at 7:38 am
Happy Birthday.Great that Aria is feeling good and had a nice day. Praying the tests go good and all problems will be resolved soon.Gut feeling can be good so hang in there.
# 27 Jan at 8:42 am
happy birthday to you. glad the doctors were trusting that you know your girl. hope answers are found soon too. keep leaning into Him. praying for all of you!
# 27 Jan at 9:39 am
Happy Birthday! So thankful that you can spend it at home with your family. Thank You, Lord!!!
# 27 Jan at 12:16 pm
Praying that the ABX works for Aria! Glad to hear that she is doing well besides that issue of dumping. It’s always nice when doctors listen to you! By the way the same birthday you had is creeping up on me! Turning that big 0 number in April.
# 27 Jan at 12:16 pm
God Bless!
# 27 Jan at 12:55 pm
Many happy returns of the day, glad that evrything is working your way MacDonald family. Amen to the gut working well, thank you Lord amen.
# 27 Jan at 1:14 pm
HAPPY BIRTHDAY ANITA!
# 27 Jan at 4:36 pm
Happy Birthday my friend…. you look so good for 40! X
# 27 Jan at 6:02 pm
Happy Birthday Anita xx
# 31 Jan at 2:02 pm
Happy birthday! Still sending you all our love from over here.
# 1 May at 3:21 pm
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# 14 Mar at 11:56 am
Good day! This post couldn’t be written any better! Reading this post reminds me of my good old room mate! He always kept chatting about this. I will forward this write-up to him. Fairly certain he will have a good read. Thank you for sharing!