Just a day
Another day has come and gone. Aria is dozing next to me, not really that happy about life. Managed to cheer her up by showing her photos of the family on facebook. That got some smiles between the cries.
She hasn’t been that happy today or that terrible but just flat really. Kinda sad to watch. No bleeding thankfully and her HB is holding. The team want to wait until thursday, when her status one is due to expire, to do another tranfusion. Thus given her max time at status one.
Arias calcium is high at the moment. They called Omaha Childrens and the Endocrine doc came over and rattled off a list of different things Aria would be feeling. And I said ‘um she probably feels all those things’ but of course it could be mainly related to her liver. The doc wants to start her on 12 hourly injections to which I said ‘EEK!’ Aria had injections in her leg at the end of our stay at Starship and still now, every time someone walks in the door she said ‘No ouchies’ Which later she told us means ouchie in her leg. So yes, not keen on that for her poor girl, she suffers enough.
I met Dr Mercer today and again another positive talk about Aria and I feel more encouraged that Aria is managing ok. Of course her quality of life is very very average but she has time.
Hamish and I are on a medical holiday at the moment. It really hit me tonight when I didn’t realise whether or not she was getting her 3 times a week dose of Epo! Yikes! Thankfully the nurse was in the room and and I asked her. She checked the computer and said ‘yes she is getting that Monday, Thurs and Friday’ Honestly I hadn’t given that drug a single thought since we got here! Honestly we have checked out a bit. Part of it is a relief that for the first time in Aria’s life we are being her parents and leaving the nursing to others. We are getting so lazy, I got huffy the other day because I had to empty her NuNu bag! Party because things are so new here, even the blood work is new. Her bili is now 21- that isn’t good. But that would be an awesome number at home. Her HB (iron) number is different as is her glucose. We are gearing ourselves up to a whole new world post transplant of intestinal feeds (WOW!) and other stuff hopefully not related much to her current position.
Anyway hopefully tomorrow Asher and I are going to visit Carol and Cordells house and get away from here for the day. And in the evening Asher and Hamish are going to watch a Cornhuskers game (American football). We are both so hopefully to be able to get out but not counting our chickens.
Asher is still doing well. Although he has got into this terrible habit of waking at 11 pm and staying up to 2am! Not fun at all considering we are sharing a room with him. What happened to my boy who went to bed at 7pm and didn’t wake until 7am? We think he is waking thirsty and thinking ‘theres mum and dad- party time’ So we are giving him heaps of drink and keeping him up late. Hamish is on tomorrow and has to be up early so he is going to sleep on the fold out bed and I will deal with Mr Asher tonight.
Realising more and more how far away from home we are. I think things will be better post transplant. We do miss New Zealand, it is our home. We are so pleased to be here and once we are more mobile it will be better.
8 Responses to “Just a day”
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# 30 Dec at 3:19 pm
Hey guys!
Havent left a comment in a while but I am following every post and reading every word… Do you have a site ticker on here to see how many hits you are getting every day?? I bet it would be a good number! I looked round but couldnt find one – maybe you have it private… but i sure love watching mine on my website! its great fun! Im praying for you guys daily and cant wait to the day when i read Aria is being released after transplant full of like and eating well for the first time — i do know she may always have things going on but im really praying hard that you guys get the best optimum outcome!! much love, Kylee xx
# 30 Dec at 3:21 pm
Hi there! yes here we are Aria, to see how you are doing.We are going to send some piccies to your Mummy’s email for you to look at, and Asher too.
Enjoy your time out tomorrow Hamish and Anita.We think about you many many times every day!
# 30 Dec at 3:37 pm
Hi just checking in from holidaying in Nelson. Callum and I were biking across a crossing and Jim Ennion stopped for us, wow, what a surprise. Anyway glad that the Lord is sustaining you as you deal with a whole new world there. You remain in our hearts and prayers. Agape.
# 30 Dec at 4:51 pm
Yea! for your outing at the Bullis’!!!!! Hospitality is TRULY their gift….and they have a wonderful way of making you feel right at home! Give them a hug for us!!!!!
Oh, Anita…..I can just picture everything you talk about. Living in a “one-room” house…..the pull-out bed…Dr. M…..and even the curly fries! One of these days, we can FINALLY meet face to face! And I’m sure it will be POST-transplant and we can discuss “intestinal feeds” together!! (or better yet…..ORAL feeds!)
Love you all….hang in there! LOTS of people praying not only for sweet Aria, but also the 3 of you!
# 30 Dec at 5:41 pm
So nice to hear the ‘medical holiday’ bit – what a novelty huh – nice for you to have a break from that. Hope you have a lovely time out from the hospital. Have you met Erika and Eme yet?
# 30 Dec at 6:30 pm
praying you all have a nice day tomorrow
praying for Aria and the ouchies
HUGS
# 30 Dec at 6:46 pm
awwww always in my prays thinking of you alot
# 31 Dec at 9:47 am
I keep praying for you! Things can only go up from here! I keep thinking postively for you! Poor Aria, tell her no one likes shots. Maybe Asher still has jetlag? I think kids have a harder time adjusting to time changes than adults do. I’m just guessing though. You are in Nebraska, so you & Hamish should check out some barbeque places. Places known for BBQ is in the states are Kansas, Arkansas, Texas, Oklahoma, Nebraska, Tennessee, North Carolina, & Alabama. Just thought I would tell you, in case you wanted to eat somewhere besides the hospital cafeteria. 😉 I pray the transplant will be soon! God Bless!