An answer?
This evening Aria went down to the OR for a scope of her upper airway.  The long and the short of it is that her airway has narrowed and scarred and has diminished to about 50% capacity 🙁
In some ways it is nice to have an answer as to what is likely causing her sleeping and breathing issues. Â But now we have to decide what to do about that info. Â The ENT doc wants to get her a sleep study at Omaha Childrens ASAP. Â But apparently the next appointment is mid Jan ’11. Â I think he is hoping to pull some strings tomorrow and get a closer appointment.
If the sleep study does indicate she is having ‘obstructive events’ in her sleep there might be another trip to the OR to hopefully remove the scar tissue and a balloon inserted to expand the airway.  Or maybe try a CPAP mask on her at night to see if that helps her.
Also today we had big problem with her BP. Â It was in the 160s/85s today! Â There was talk of moving her down to the PICU sooner but thankfully it comes down with her meds. Â So they changed her BP meds to Q8 and that seems to keep it managed.
Currently Aria is in transit back to the PICU. Â Apparently she has been charming the nurses down in recovery, sounds a little funny. Â She has been a big trooper thru all of this, even letting me leave hospital for an hour to pick up Hamish and Asher while our car was in the shop.
Officially the MacDonald’s will be spending Christmas in hospital and likely in the PICU. Â Stink. Â They wouldn’t discharge her home until this issue is sorted because it isn’t safe. Â That’s ok with us.
I have decided the celebrating Christmas is a blessed and wonderful thing.  It is a perk of life.  Like icing on the cake of life.  Food, presents, home and fun times with people are all good blessings from God.  But there are many many people who will not enjoy this perk of life.  We will be one of them, although this year, now we have an apartment and a car and a kitchen we will celebrate later.  God is still good and just because we won’t be munching on the roast lamb I had planned doesn’t mean His gift of His Son is any less!  It doesn’t have to be the 25th of Dec to celebrate that!  Still our hearts hurt a little and we wish we were home but we box on 🙂
16 Responses to “An answer?”
Leave a Reply
Support Aria
There are many ways that you can support Aria.
- Bank deposit
- Cheque by post
- Contact us directly
Subscribe to updates
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 22 Dec at 9:18 pm
So glad you have some answers. Hugest hugs and kisses to all of you 🙂
xxxx
# 22 Dec at 10:00 pm
I hear you. both 🙁 and :-). Its just not fair sometimes when life is hard. Good on you for looking on the bright side. You are right 🙂
# 22 Dec at 10:04 pm
Bless you heaps. It is so easy for us to see what isn’t what we had hoped/planned for. But even in those times- we can look at what we DO have.1) You are all 4 together – something that was VERY uncertain this time last year.2) 3 of you are in good health- and the 4th is better than she was this time last year. 3) God is STILL God- and He will NEVER EVER let you go. I do hope you have some fun this Christmas- whatever form it takes- and even more important- I hope you feel God’s peace and blessing- and the love of all your ‘family’ of supporters. GO you guys
# 22 Dec at 10:07 pm
Answers were needed and they were given so another prayer was indeed answered. I pray that more help will be found so Aria and family will be home together soon. Christmas will be different than planned but still the same meaning. Will be praying.God has a plan for you to be where you are this year.
# 22 Dec at 10:27 pm
I hope you have as lovely a Christmas as you can have in hospital! Sending warm thoughts and prayers your way as you battle through another wee hurdle. Merry merry Christmas to you and to the wonderful staff who will be looking after you on Christmas Day.
# 22 Dec at 10:30 pm
I think you will be surprised to find yourselves enjoying Christmas this year in a way you didn’t expect. Yes,I mean enjoying. To begin with you are not hedged in to celebrate the traditional 12 hours (Christmas Day). Instead you are free to enjoy looking at the bigger picture where dates no longer matter. It takes maturity to be able to do that and that’s where you’re at! Your mature outlook inspires us.
God lives, moves and works outside “time”. (O.K. He made it but He is free from it’s hedging-in limitations). You’re free too. You can celebrate Christmas dinner the day you choose!
# 22 Dec at 10:36 pm
If there is One Person in all the universe who understands just how you are feeling deep down inside, it’s because He knows what Christmas is all about . . . because “Christmas is a Son away from Home”.
# 22 Dec at 10:51 pm
I lost a young friend this week that had a heart transplant a year ago and at her funeral I spoke about the fact that Christmas day is not about the booze the presents or the food its about being with the people you love and care about. So enjoy what you have and a merry christmas to yours.
# 22 Dec at 11:29 pm
I’m happy that you have got some answers, that is always a good thing. Sorry you won’t get to celebrate Christmas on the day at home but Aria’s wellbeing is the most important thing and getting this sorted is getting you one step closer to NZ every day. I will be thinking of you all.
# 22 Dec at 11:34 pm
Goodness our problems in our family pale in significance to yours yet you make me smile at how you turn things into looking beyond where you are at into a bigger picture.
As others have said God is till God and He is still in charge.
Trust your Christmas day will have some nice surprises for all 4 of you. At least a very close time together. God Bless.
# 22 Dec at 11:41 pm
I am following Aria’s progress each posting. I don’t understand all this techo jargon but hey – Keep the faith. XXX’s & Hugs from me – over the sea. PS. I STILL want to teach Aria to Rock’n’Roll in Manurewa.
# 23 Dec at 1:58 am
Good you have got some answers. Sorry you won’t be able to celebrate Christmas on 25th – but your attitude is brilliant – I am sure He will carry you all through this difficult period. I’m sure the Lord has a purpose for you to be where you are this Christmas. You are very strong and a wonderful encourager. Praying for you as always. xxxx
# 23 Dec at 5:27 am
I’m happy you got an answer, Gods given you Aria for another Christmas and many more to come, Amen. An Aria has been given two amazing parents and a beautiful brother. Two days ago I got my wallet stolen, the last of many things that have gone so wrong this year, but today I saw a man who couldn’t walk straight, and a woman who couldn’t walk full stop and now hearing about Aria, I continue to give God praise for all hes done for me, Thanks for continually humbling me and keeping things in perspective, Mcdonald whanau xx Don’t be dismayed the battle is the Lords xx
# 23 Dec at 6:43 am
Anita, Hamish, Ashe and Princess Aria; we wish you a very peaceful and blessed christmas time. We thank God for all His blessings for you all, thank God for your courage and patience; thank God for the love you all share for each other; thank God for all the answers from such wonderful medical personnel; most of all thank God for His gift of life for each of you and for us all; His gift of His Son Jesus Christ so we can all be together with each other and with our God forever amen. Praying for more clear answers for a much more healthier Princess Aria, praise God, Jesus and Holy Spirit amen. To our God be all glory this christmas time amen!!!!!!!
# 23 Dec at 2:40 pm
appreciate your frankness – your take on life – and the fact you keep a whole lot of us in the loop – no matter how good, or how grim it is for you all – and through it all you manage to encourage a whole world of people out here- you don’t know us, but we regularly pray for you (two teen girls, and us) and I update them after reading your blog each day. Hang in there, wonderful mum that you are, and amazing dad that Hamish is – and amazing couple that you both are ……….thinking of you all at this time …….
# 23 Dec at 2:50 pm
It’s good that you might finally have answers, but that does stink that you will be in the hospital. You can celebrate Christmas anytime you want. The kids won’t know the difference, and they will still have a great time! My prayers are with you, and I’m hoping Aria will be able to go home soon, and be a much happier and healthier girl. She is a brave little girl, that’s for sure! God Bless!