Bad words
There are words that I don’t like to hear.
One is : Â Intubation
The second : TPN
Don’t worry intubation isn’t on the cards. Â Aria is OFF O2 during the day!!!!
But TPN has been discussed. Â I thought we were done with that stuff.
Aria continues to dump.  Lots of water coming out of her stoma.  Diarrhea for you and I.  In the meantime she is on IV fluids with a bit of sugar/dextrose to make sure she doesn’t dehydrate.  Her blood work and kidney numbers are looking great so we are doing a good job of that.
But she does need calories, food. Â Bit sugar isn’t going to cut it. Â So today she started on 10mls per hours of feed. Â The hope is that it doesn’t make her gut mad and make her dump more. Â Or it could really help stop the dumping and we can gradually increase up to her goal of 45 mls/24 hours and then 65/16 hours
We started at lunchtime and she didn’t have increased outputs, but tonight will be the test. Â We are really really hoping she can avoid TPN. Â That is our prayer.
Also, we have been having some real behavioural issues with Aria this admission. Â Everything is NO! and everything is a battle, everything. Â It is so unlike her. Â Lots of yelling and drama. Â Hamish and I were starting to tear our hair out. Â Finally we thought all these admissions were catching up with her and she was showing signs of stress and anxiousness. Â But it dawned on me as she asked me for pancakes and eggs at 6pm that she is hungry! Â It came with a little tub of butter and she ate the butter and proceeded to crunch the plastic tub it came in in her mouth!
So this afternoon after the feeds had started she was a bit better, thankfully. Â I was remember years ago when she would lose her central line for an infection and be off TPN. Â A couple of days without TPN she would go crazy. Â Well this is the same thing I realised, no calories for 3 days in the same thing. Â I can’t believe how disconnected I am from Aria’s hunger signs, I guess we really don’t understand them and neither does she.
Anyway, hopefully tomorrow we can increase feeds and not go back to TPN.
12 Responses to “Bad words”
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# 12 Jan at 11:34 pm
Still thinking about you all. Hey – Has GLAMma arrived safe?
# 13 Jan at 12:00 am
You must have so much inner strength Anita. How you have kept going with all the adversity just amazes me. Your faith must be so very very strong that the outcome just has to be the best.
# 13 Jan at 12:17 am
Hugest hugs for all of you. Praying that she stays off TPN and that she improves quickly.
xxxx
# 13 Jan at 12:52 am
You tease! Fancy starting a post with those 2 words.
Bizarre how much you have to readjust to things post transplant – grumpy hungry pre-schooler! Yay!
# 13 Jan at 3:04 am
Praying that Aria gets sorted soon and also for you all. Blessings, Judy.
# 13 Jan at 3:15 am
why don’t they give her something to reduce her gut motility and bung up her outputs a little?? it actually should help with being able to increase feeds….
Glad the lungs are doing great and the O2 is off during the day how awesome is that,
will be praying for the behaviour issues and the health stuff
# 13 Jan at 3:50 am
Oh Anita, so much to always think about with caring for someone like Aria…. you are so in touch with her….and so clever you figured out her hunger. praying with you that this quickly gets resolved and she stops dumping/gets that full feeling! Much love. XX
# 13 Jan at 4:36 am
Praying for you all to have wisdom from Jesus to figure out the many happenings in Aria’s life. To me it seems things are coming in fast and sure for Aria, the good things are getting established as lots of progress being made in her dear body. Praise the Lord for hunger signs, shes making lots of progress, and thank Jesus for keeping her off tpn. Lots of hugs for you parents, you are such wonderful parents who have learnt so much about medical treatments and so forth like God’s miracles and faith in him day by day, moment by moment. God bless you so much MacDonald family, blessing for each suffering you had been thru, we love you and say Lean on Jesus lean on me to pray for you always, thank you for sharing your lives, the ups and the downs and the peaceful minutes.
# 13 Jan at 7:44 am
What a trip your family has been on, but to know you have not been alone on it. God has been there every step and continue to be so.Such a testimony for us. May he continue to solve the bumps just now and give you answers you need to make Aria comfortable and happy again.Praying for you all.
# 13 Jan at 8:58 am
Sounds like you had a rough night. I’ll be praying that today goes better, and that everything goes well! God Bless!
# 13 Jan at 9:48 am
Praying for each of you and all of your daily challenges. Hug Aria and Asher for me!
In His mighty love,
Carolyn O’Cain
# 14 Jan at 5:07 pm
Disappointing to read of ongoing problems but you have come so far
we just have to pray that these will eventually all be sorted and
you can all lead a normal life back here with us in NZ.
Thinking of you daily.