Ummmm Ok then
Ummmm so it appears tonight Aria is going to go without the vent. Â Or at least try her without the vent and she how she does. Â Ok then. Â I think she will do fine, she is still on 26% O2 so that makes me happy. Â Today when we were in the room I hooked her up to the o2 and she is much more settled and the day was much more pleasant.
Really it is a bit scary because the vent is the only thing keeping us in the PICU. Â Still we are really hoping discharge is a week away (pending a success night off the vent) and they might be compassionate and let us stay. Â We have spent 7 long hard months there. Â We know the staff and Aria is comfortable there. Â Would be hard to unsettle her with a new environment on the ward and then another one at home.
One of our fave PICU nurses left today for another job in the hospital. Â Interesting thing about Aria when she could talk (before 1st transplant) she would refer to certain people or things as My. Â My daddy, My Nana, My Dolly and My Nurse. Â Only those people would get a My infront of them. Â If Hamish or I had to go to the toilet then she would say ‘get my nurse then’ and she would only refer to certain nurses as My Nurse. Â Cute. Â This particular nurse we will miss a lot. Â She was there new years morning at 3am when Aria was on the vent (and I couldn’t sleep). Â Fast forward to the day of Aria’s second transplant and she was there that morning too. Â And all the tough days in-between those events that are now blurred. Â We are SO thankful for that and all the other nurses that have done hard days with us!
So Aria might be home in a week. Â Hamish’s bumped into one of the ICU docs in target today (Omaha is a small town). Â He preached caution when Hamish’s mentioned Aria should be home in a week. Â He is right, it might not be that straight forward. Â Please pray Aria might get home, there is some fine tuning to do (and lots to organise!) Â But God can do it!
21 Responses to “Ummmm Ok then”
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# 3 Jul at 8:56 pm
I remember being discharged “home” to our apartment. It was an awesome and frightening experience. It’s hard to imagine being scared and excited simultaneously, but being discharged after months in the hospital will certainly do it to you!
Hoping and praying that this next week goes by smoothly and that the transition to “home” is easy!
Laurie, fellow UNMC liver mom
# 3 Jul at 8:58 pm
Oh, we’re praying Anita. I hear in your voice a feeling that I recognize (if I’m correctly identifying it): when I have been in the hospital, for Crohn’s complications, I have this deep, deep desire to get OUT and go HOME, but I also have this deep, deep fear of leaving the hospital, leaving the place that knows how to take care of me. It’s so conflicting. So strange. I mean, why would I want to stay in the hospital, in the strange-smelling, not-private, full-of-strangers hospital when I could be at home with my loved ones in my own bed where I can sleep flat? I will pray for this conflict (again, if I’m correct in saying you feel it) about keeping Aria on O2 and taking her off soon soon soon. I pray that God will give you peace with His timing, whether it be faster or slower than you feel comfortable with. Much love, Taryn
# 3 Jul at 9:24 pm
That’s wonderful, & frightening at the same time! I pray all goes well! God Bless!
# 3 Jul at 9:31 pm
I would have thought some day vists would be a good interim step to get her and yourselves more comfortable and used to the new enviroment with less support from the hospital.
anyway will pray for her discharge and that all the gitters will go.
# 3 Jul at 10:03 pm
praying how exciting to think she might be home in a week
# 3 Jul at 11:28 pm
Yeah we know sometimes things don’t always go to plan (understatement!) but here’s hoping all the things fall in place for you to be home soon, be it a week or close enough. Hope you get to stay where you are most at home in PICU but Aria may just beo too well to stay there.
# 4 Jul at 12:43 am
I hope that all goes well this week and Aria can be at home – am praying for that for you guys
# 4 Jul at 2:14 am
thats truely amazing!!miracles can happen and God continues to come through, again and again and again…His mercies… are new every morning, new every morning, Great is Thy faithfulness O Lord, Great is Thy faithfulness.love yas heaps and heaps xoxox
# 4 Jul at 2:15 am
I remember when my husband was discharged from one hospital to a recuperating hospital, I was completely out of my comfort zone and was very stressed. However I got through it and he came home in a few weeks. I know you will be strong no matter where Aria is as long as she is improving. Praying for you all that you will feel comfortable with whatever comes in the next few weeks. In Christ,
Judy.
# 4 Jul at 2:20 am
Understanding how you feel!!! Praying that God will give you his everlasting peace. xx
# 4 Jul at 3:07 am
So pleased to hear you say the unpleasant days of the past 7mths are now blurred. That’s great cos whats been & gone has gone & now you are able to focus on the ‘now’ & that is the road fwd to heading ‘home’ 1/2 way to your real home NZ. All exciting & scary at the same time. But boy oh boy if anyone will be able to adjust IT IS YOU GUYS as your coping/adjusting skills are fab & up to par. Afterall you’ve had 4yrs practice!!! Wonder on the times you are able to leave the hosp for walks these could become dives to home for a few hours to play & get familar with the new surroundings & still return to the comfort zone of the hosp…like a slow but steady breaking in process.
The moving on of Aria’s MY NURSE is maybe a sign that she feels she has done her important job with Aria & is satisfied that she can safely leave her to travel the rest of her journey with her capable parents. That’s the scenario I’m painting anyhow, be it logic or not!!! This nurse travelled alongside softening the bumps, & now the road is smoother she has confidence you can do it as a family with a little assistance. A good sign, the tow truck no longer needed, the car can manage!
Yeah, just another adjustment for you all but you can do it, leaving us readers overwhelmed in the process.
Blessings & love to you all
# 4 Jul at 6:46 am
Such good news again. God has been with you all and Aria for so long so I know he will follow you where ever you are. He will still keep you in his loving care. He is always just a prayer away and has shown he is the Great Physican.
# 4 Jul at 2:13 pm
Yay for nurses (I might be biased?)
You guys sound so good. As my sister said yesterday, “That kid is getting BETTER.”
Love you guys heaps,
Ali xoxo
# 4 Jul at 5:58 pm
I’m all for the day visits to break in slowly. Nights are more scarey than days so see what the “powers that be” think about that one. Is there no stepping stone from ICU to general ward? That would be another idea.One thing I know is YOU ARE NOT ALONE!!! God is ahead and we just need to follow totally confident that HE really does know best!
# 4 Jul at 6:06 pm
wonderfull news,must be a weard feeling leaving the hospital,guess it could be a bit like comming home with a new baby and you are a first time mum,exciting but, scary untill you get into the new mode and rythm of things.take care,blessings to you and your wonderfull family.xxxxx
# 4 Jul at 6:29 pm
Your comment today is so personal for Aria’s nurse oh I suppose shes feeling the same as you, youknow it goes both ways after many days of sharing Aria’s challenges and successes. I love the way you preach today “but” i know God can do all things amen amen amen!!! Fear not, for I am with you all ways…………….amen!!!
alofa tele, Noa
# 4 Jul at 6:38 pm
“Acknowledge Jesus in all our ways, and He will make our paths straight” this a lesson for me lately its been a very good lesson when my car hit the roses at the side of Chapel Road school hall yesterday morning for church; “aaaah yes Jesus is before me behind me all around me inside of me” my prayer of safety – i should had said it before i drove down all the way from manurewa. We prayed for you all at church and also in the evening a special 3hr of prayer for all our needs and thanksgiving to the Lord for Sunshine Preschool is opening this month. We have a Fijian lady Dianne leading it – pray for her and the preschool ok love u all noa.
# 4 Jul at 9:21 pm
It’s all so frightening and exciting, times of great change, but I know that yours and everyone’s faith will carry the day.Me and my family continue to send you all thoughts of love and best wishes.
# 5 Jul at 1:12 am
We are all praying for you as well as Aria. I admire you so much. I was exhausted after 32 days looking after my brother in ICU. You have done 7 marathons back to back. You rock!
# 5 Jul at 2:33 am
Cool one just remember take one step at a time, day by day, don’t rush things. Ok?
# 5 Jul at 12:03 pm
Anita – Arias nurse will feel it too it will be hard for her leaving you and your wonderful family. Even tho we arent meant to to we do get very attached to our special patients. xx