Ouch! My heart hurts
Aria is still doing very very well. Â So well. Â On paper she looks great. Â Today she is peeing heaps, those kidneys are going great guns. Â She is about 20kgs which is about 5 kgs heavier than she should be due to all the fluid on board. Â But they decided they didn’t even need to give her medicine to help her pee (lasix) because she is peeing so good anyway.
No temps- nothing- perfect. Â Alway in the 36s- not to low and not to high. Â White count is normal !
Stuff is coming out of her stoma, bile and gas.  Good signs although not getting that excited cause we have seen that before.  She is still draining out of her NG tube some stomach contents, they will hopefully cap the tube next week and everything should go south.  The drain from her abdomen are drying up too and only a bit of blood and no stomach contents- hopefully meaning the bowel is hole free and not leaking.
Most importantly Aria is smiling without us having to work to hard for them. Â She seems SO MUCH BETTER, like a new kid. Â I told her Aunty was coming to visit next week and she smiled and nodded her head and held up three fingers. Â She remember that it took three plane trips to get here! Â Amazing memory Aria.
Because Aria is doing so well it is hard not to start looking into the future and wondering- when will our life stop sucking? Â Did you know we haven’t lived as a family for almost 6 months. Â I miss Aria. Â Right now I can not imagine a day when she will be able to breathe on her own, talk and walk and be fed thru her gut and SLEEP AT HOME. Â Every night when I leave it just breaks my heart so much. Â I just want to sit and cry. Â But what do I do? Â I have a husband and son who also need me.
I just feel like our life is LOSE/WIN. Â I ‘win’ a night in my lovely apartment with my husband and son but ‘lose’ a night with Aria. Â I ‘win’ a night with Aria and ‘lose’ sleep and the comforts of home.
One of the major downsides is travel.  If the person at home wants to get out in the car on their non hospital day then they have to drop and pick up the other person.  The person in hospital needs to leave before Asher’s bedtime and hope like mad Aria is asleep so your heart doesn’t crumble into a million pieces by leaving when she is awake.  A second car would solve this problem but the expense and having to resell makes it a hard decision.  ARGH- see what I mean about Win/Lose?
Anyway for those who pray, please pray for healing and that Aria will be HOME soon. Â I know there is still months ahead of us but God can do anything!
17 Responses to “Ouch! My heart hurts”
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# 15 May at 8:14 pm
I pray that things continue great for Aria and that Your sweet family will be able to spend more tiime together soon.Seeing your relative from home should be good for you.May God give you peace as you continue on this special journey.Just know God has a special angel with Aria when you are not there.
# 15 May at 8:14 pm
I am so pleased to hear the GOOD news – and pray that it will ALL be good news from now on. I can so relate to the family disruption. When my daughter became ill in 2008 it was a good (almost) 2 years of disruption for our family. I spent most of my time with her wherever she was hospitalised and it became rather ‘normal’ for us all to be in different places. It was tough – but we did it, a day at a time – and sometimes a moment at a time – and God brought us through it – as he will you too, I’m sure. You are doing so very well Anita, and I know the tiredness threatens to consume at times…not to mention how cut off you can feel from all that is familiar….and how sometimes you feel very much like you’re in a bad dream and one day you will wake up from it – hopefully! You will find yourself a much stronger person for it, and your faith – although it seems strong (to me) now – will grow even more as you journey this road you would not wish anyone else to journey. Keep on hanging in! You are amazing – you all are. And know that I join so many others in praying for the very best outcome for Aria – she is a precious jewel and one day she will sparkle much more brightly – although it does sound to me now, that she is starting to do so right now 🙂 Cherish that, and try not to look ahead – but to live in the moment with her and each other. Big hug coming through. xo
# 15 May at 8:58 pm
Yay so pleased to hear all the good news! Yay for Aria’s new kidneys doing such great job and also that her drains only have blood and no stomach contents! This was a great post to read. Hard though to know how you have to leave Aria at night and leave your husband and son during day, Hopefully all continues to go so well with Aria’s recovery and soon you’ll all be together!!
Aria sounds like such a bright wee cookie remembering that her Aunty comes over on 3 planes!! Very cute!
xx
# 15 May at 9:02 pm
I see this is a totally different recovery to the first transplant – Aria seems to be so much better so much sooner so hang in there dear girl – You and Hamish will come thru this in one piece and you will look back on this time in your life with a shudder and also relief that you got thru this and LIVED and that life will be normal one day. I pray for you guys everyday and send you much support —- You guys are awesome and i pray for serenity for you and i pray that you have laughter everyday as this is sooo healing — tread lightly thru your life at this time as much as possible === hugs from us in NZ
# 15 May at 9:42 pm
Words cannot express the joy as I read your posts daily at the moment. As someone has posted already this stage post surgery is so different to her first one. Its a joy to readd. My prayer is that God will continue the healing process in little body, All those smiles are telling me that she is feeling ever so much better within her slef. Go Aria Go. High five it girl. My prayer tody is that she will become stronger as each day passes so she can fight any nasty shocks in the future. Love Lyaine.
# 15 May at 10:25 pm
praying God will give you the strength you need
I pray daily for Arias healing
May God comfort you and allow you to realise it wont be like this forever
# 15 May at 10:27 pm
So happy that Aria is doing so well. Please hang in there, we’re all praying for you.
# 15 May at 10:57 pm
Thanks so much for the update, Anita. You are an amazing woman, and an amazing parent and Aria has lived long enough to receive what looks like a very successful transplant because of the total committment of yourself and Hamish, to her wellbeing.
the road you walk sounds so hard, and you are torn in all directions, and exhausted. That is totally understandable, and it’s great that you wrote about it on the blog and not just the good bits
Remember to take care of yourself and know that so many people send support and I hold you all in my heart and send you some energy for the mammoth task you do of mothering Aria and Asher too.
# 15 May at 11:05 pm
I get it, it really sucks.I have cried for nearly the whole hours drive home from hospital at times. I hated leaving Lara and hated only being home just in time for Jake to go to bed, often too exhausted to read him a story and just cuddled him instead. You know, the kids won’t think its all wrong, this is all they know and they do know how much you love them both. It is you and Hamish that carry the burden, the horror and the memories of the bad stuff. Just know that just as our life is pretty normal now, yours will be too. i know it seems so far away and it seems like it will never happen – remember I believed that too – and just look at our life now. It will happen, you will stop feeling exhausted all the time, you will have less stress, and you will get Aria home and be a family again. it will start slowly and then one day you will wake up and think wow we are a ‘normal’ family. Big hugs to you. you must be so exhausted mentally and emotionally and that takes a big toll on how you think and feel things. I am happy Alex is coming soon, having your family with you, someone who just gets you is just so great. Always thinking of you. Go Aria!
# 15 May at 11:12 pm
PS you guys ARE awesome – it takes a special person to get through this, to have the strength, to have the faith, to have the friendship and partnership. Don’t underestimate how well you are doing.
# 16 May at 1:53 am
It’s fantastic that Aria is doing so well, long may it continue. I hope you can sort out transport problems and that you will all be living together in the near future.
# 16 May at 3:30 am
So so so so so thrilled to hear Aria is continuing to do so well. I just can’t imagine how hard it is to have to walk away from her in the evenings and go home without her – I guess walking back through her door in the mornings is very very special. Keep on keeping on, you are just an amazing family, here’s to more wonderful days with Aria progressing well, and lots of rest and recovery for you all! Love to you, Lis x
# 16 May at 3:01 pm
Thank you for taking time to write so frequently and in such detail. You really have worked hard at keeping us in the picture. We feel we are walking with you. Great Alex is coming over.
# 16 May at 3:18 pm
Hi guys,
WOW!!! The family are all so proud of Aria and all of you too. You have all gone thru so much. My love goes out to you all. Aria is always in our prayers. Keep strong Anita/Hamish and remember, even if we’re not there in person, we are all there in spirit.
Love always,
Ange & Shaun xxoo
# 16 May at 4:15 pm
Awesome miss aria is doing well and you are having aunty to visit very soon! thank you for continuing to take the time to update.thinking of you xx
# 17 May at 3:43 am
Its just awesome news that Aria is doing so well.
Thankyou so much for sharing your day to day life with all of us. I still check in daily and pray for you all. I really pray that your family life would (in the soonest possible future) become just unbelievably easy in comparison to what you have been through in Arias precious life to date. You are blessing many of us in ways you possibly dont realise. Each day that I read particularly emotional or tough posts from you guys I shed tears for you and once again thank God for my day to day “normality” and health. It could all change so quickly and I am kept mindful of that as are many others who keep you in their thoughts. God Bless you all.
# 17 May at 11:56 am
I’m so happy that Aria is doing so well! I pray that the good news keeps coming your way! I pray she gets to come home soon, too!