Disappointment….
I’m sorry to say that Aria has been re-intubated. After a very valiant effort, force of will lost to physical limitation.
Aria’s right diaphragm which is partially paralysed kept on creeping up and up over night limiting the volume of Aria’s breaths which meant despite all her efforts she just couldn’t clear enough carbon dioxide out of her system.
She lasted just shy of 24 hours, her best effort by far. She did really well and we are very proud of her.
So the next step in her journey is to have her rest up over the weekend and have Ear, Nose and Throat come in on Monday and organise a tracheotomy. As for the diaphragm issue, we’ll give it more time to heal and if it is still dodgy further down the road they can look at tacking it down so it won’t cramp her lung’s style. They can’t do this now as they don’t want to mess with her abdomen too much because of what has already gone on in there.
Obviously we are a disappointed that this attempt didn’t work out, we were very hopeful after she started off so well. However we accept that she isn’t quite ready yet and that the trach is the right thing for her. As time progresses with the trach she should be able to get out of her PICU room and move around a bit and even have days when she is only on the vent at night so that is something to look forward to.
Through all this I take comfort in my new go to verse, Psalm 145:17. In the translation I appreciate the most it says…
God is righteous in all his ways, he is kind in all he does.
This is really comforting to me because I believe this and know that in God’s far superior wisdom, this ‘failure’ is an act of kindness towards Aria and us.
Thanks for all your prayers for Aria over the last day, we know God heard them all, and has answered it in the way that is right for this journey.
26 Responses to “Disappointment….”
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# 16 Apr at 8:07 am
I know we all prayed for this to work but I also asked God’s will be done and he knows best. He has a plan and it is in time with him. Will just keep praying for Aria and your family that they can get some rest and have a good week-end.
# 16 Apr at 8:50 am
You have put things very well in this blog, Hamish. Thanks for the verse and for sharing your faith in this very difficult situation. Please tell Aria how very proud we are of her and how much we are praying for all of you!
Carol for us both
# 16 Apr at 8:59 am
She did brill bless her heart xxx Its just a stumble eh :o)
Luv and hugs from those darft brit maties of yours xxx
# 16 Apr at 8:59 am
Im so sorry this happened and that Aria has to have her tract
However God is in control 🙂
and He knows whats best 🙂 🙂 🙂
# 16 Apr at 9:46 am
Yes….thank you for sharing your insight! It can be very easy to get discouraged when things like this happen, but I love what you said about “God’s love and kindness toward Aria!” We can’t see the big picture, but simply have to trust in the One who is putting all the pieces together!
Love you guys……
# 16 Apr at 1:16 pm
You gave it a good try Aria we are so proud of you, thanks for sharing that verse from Psalms Ham, I liked what Lori said
Love you all
# 16 Apr at 2:16 pm
Powerful Psalm! What an amazing little girl…
# 16 Apr at 2:32 pm
Great effort Aria! Our hearts and prayers are with you always. The verse in Psalms is so true and, yes, Lori put it very well. God sees the big picture and we have to trust in Him…. Jer 29:11…I know that it is a key verse for you as it is for me too. He knows the plans He has for you…. never forget that… Our God is an Awesome God!
Doc and Sharon
# 16 Apr at 3:03 pm
You gave it such a good go Aria well done!! Hope you have a nice restful wknd and in no time at all you’ll be going for wee walks in your pram with a trach, it’ll be much better than that nasty tube!!
take care
Lisa D
# 16 Apr at 3:11 pm
Well it’s been a heck of a couple of days for you but now you know and have a plan that suits Aria. One thing I have learnt with our special kids is that nothing goes according to plan, but these precious kids seem to work things out somehow anyway and us parents just need to sit back and have faith that it will all be taken care of and be ok. You guys are doing this just fine! Well done – always thinking of you. hope your new place is great and gives you the space you need to have time to yourselves. Hugs
# 16 Apr at 4:07 pm
I’m sorry that it didn’t turn out like you hoped it would. Aria did a good job! When she has setbacks, she seems to get even stronger than before, after she’s had rest. So, I will be praying that things will continue to go well for her! Give Aria a hug for me! God Bless!
# 16 Apr at 4:51 pm
Lamentations 3:32
Though the Lord bring grief, He WILL show compassion;
so GREAT is His UNFAILING LOVE.
You all continue to be in our prayers often.
Arohanui, W SCRAM
# 16 Apr at 7:35 pm
Really sorry to hear that you guys. Still praying and thinking of you all lots!
# 16 Apr at 7:47 pm
What a triumphant psalm! Hard to accept at this time but none the less true. He really is KIND. Hope you get to a church this weekend and hear a refreshing message to give you hope and joy.
# 16 Apr at 7:52 pm
Sorry it didn’t work out this time, guys, she will do better next time i am sure. Praying for you all as usual.
Judy.
# 16 Apr at 10:50 pm
God is faithful and will not let you down. We stand in awe of what He is doing in all your lives even though at present we dont understand how it all will work out. Continuing with you in prayer
# 17 Apr at 2:30 am
Good try, Aria. Good girl.
# 17 Apr at 2:55 am
oh guys what a week for you – Dear wee Aria you are such a brave wee warrior – sending prayers to you all and hugs from NZ
# 17 Apr at 3:21 am
She is such a wee fighter and such a special wee girl I pray for her to continue to have strength
# 17 Apr at 3:18 pm
Just watch ur wee girl on tv.so brave,wishing her the best,our thoughts are with you all.
# 17 Apr at 4:14 pm
You have an amazing daughter, Aria, what a fighter ……. but then she is part of a rather special family, Hamish, Anita, Asher and Aria, who are all part of God’s family.
May God continue to pour into all of you, all that is necessary for this journey.
With my love and prayers and very best wishes for all to be well soon.
God bless you
Eve
# 17 Apr at 4:20 pm
Saw a doco on Atitude program this morning, you all have amazing strength. Good luck with everything that life has in front of you.
# 17 Apr at 8:50 pm
I watched the documentry on Attitude this morning and was touched by the love of both parents for little Aria. Sending you lots of love.
Anne
# 18 Apr at 3:21 am
We are so touched by your gorgeous wee girl and courageous story having just watched the Attitude show. We only wish it was Broadcast at primetime instead of early morning in the weekend. New Zealand needs to see this story and experience the journey of of hope that you are living as a family. You are in our prayers. God’s hand is resting and bringing comfort each day to sweet beautiul Aria.
# 18 Apr at 8:19 pm
Been thinking of you all often! So proud that Aria lasted as long as she did off the vent – she is such a trooper!
Hoping this turns out to be a positive step forward for Aria in the longterm. My Mum had a trachy at one point in her illness. For her it was an important stage in weaning off the ventilator that she had been on for 6weeks. Much easier to have periods off and on the vent with a trachy. And in the periods off the vent she could talk if she covered the trachy hole – this was 18yrs ago though so might be all different now or in a small person like Aria as opposed to an adult? But hopefully a step that will allow continued gradual weaning off the vent?
# 19 Apr at 7:07 pm
God speaking thru His scripture give such a boost to our sometimes very battered spirit.What an awesome accomplishment you have achieved sweet wee Aria,Jesus hold you in His hands -nana rose