2010 January - Aria MacDonald

….if silence on the blog means transplant has happened and we are all busy.  Sorry but no.

We are in the final days of the family being here and there are lots of emotions and struggles and joy too.

Never will I be able to fully communicate the overwhelming hardness that is leaving our home country and town and taking our two young children to a new country.  I know they speak English in America but there is very, very little here that reminds me of home and I find myself tearful and upset when something pops up randomly in my head that does.  But people move to new countries all the time, for fun, cause they want too…. because they want too.

But the desperately hard part is that we are about to hand our daughter over, to pretty much strangers, to do with her something that we as parents can’t.  And she will receive a gift given by others whose life will be forever changed by the death of their Aria or their Asher.

Why couldn’t God choose to have Aria receive her gift while the family was here?  I struggle and argue and cry.  Why?  Why not?  It would of been perfect.  Why must we cross oceans to give Aria this opportunity?  Why was this, asked of us?  What if they board the plane and we get The Call.  What if we don’t get the call?  What if?

Them being here has brought massive relief and comfort.  They are family.  That is what family does, most family that is.  They have taught me so much about being a servant.  I so admire my sister, most young people her age would be enjoying a fun summer with mates.  But she gave that up to come out in the cold in a foreign hospital to support me because she knew she could make a difference.  She put me, Hamish, Aria and Asher before herself as did Christine and Bob.

Argh!  Perhaps this is one of these moments when I forget people actually read this blog.

Lastly and most importantly.  I am so proud of Aria.  THE GIRL HAS END STAGE LIVER DISEASE!    She still says Please and thank you!  She still laughs and jokes.  She says I miss you mummy, come see me Daddy.  She claps for Asher when he does wees on the potty.  How much do I have to learn from this child about not complaining and moaning?  A lot!

I have no idea how this will turn out.  I don’t know when or if we will get that Call. I don’t know how she will recover.  I don’t know our return date to NZ.  I just don’t know.

But I know who knows.  I know that transplant didn’t happen while they were here because it is for the best of everyone involved.  Part of me is actually excited about finding out how on earth it could be for my best, Hamish’s best, Christine and Bobs best, my little sisters best.  Aria’s best.  Excited and overwhelmed.

For we are more than conquerors even though I would rather hide under the bed.

²⁸And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Romans 8:28

New Years Day 2010

Five days Later

”

ARIA IN THE DOM POST AGAIN

I was out walking Aria last night and she was in a very good and very chatty mood. I think she was excited to have me looking after her as I had been promising it to her all day as I was busy most of the day doing one thing or another.  She was sitting in her pram holding onto the salad she had directed Poppa to make for her and had her water bottle tucked in beside her. I started to talk to her about her ‘new tummy’.

A new tummy is how we describe transplant to her. We talked about how she was going to get a new tummy which meant she would be able to get all her energy from things going in her mouth and out the other end and that we wouldn’t need wiggle so much. She then proceeded to tell me that she wouldn’t need her nunu (tummy tube) so much either, I told her that is right. I told her she could eat and drink as much as she liked, and she told me that she was going to drink lots of water with no pukeys.

We also talked about, what may not really be a walking out and about topic, her doing poos. Now Aria has had a bit more traffic down there because she has been having daily washouts. It has gotten to the point where she is quite sure that now she is doing poos and proudly tells us that she is doing poos just like Asher. Aria is quite happy to be doing the normal thing and seems ok with the idea of being like the rest of the family.

We even talked about waiting for someone to give us the gift of a new tummy. I’m not sure what she made of this as she was probably envisioning a box in gift wrap with a ribbon on it but she listened intently as we discussed it. I told her that God was organising it and that we trusted Him that it would come at the right time.

I’m not sure what of this discussion she actually understood, or what she thinks is happening to her, but I am glad that we had a good talk about it and that she seems to have some idea of what is to come.

THANK YOU FOR PRAYING! LOTS OF UPDATES !!!

Update Lots of you will know about my friend Lou’s fundraising effort on Facebook. But now her efforts have caught some media attention

Please join support Aria and Lou on Facebook HERE. Louise is an amazing photographer and participating in this fundraiser will be win win for you and Aria.

Hamish and I managed to get out again tonight for tea/dinner/supper. It was really nice and we were very conscious that they days before the family goes are quickly dropping away. This time next week they will be gone.

Our hearts are heavy with many things.

We have been given an excellent recommendation for a preschool for Asher that is very close to the hospital. A lovely nurse tech used to work there and knows a family that still goes there. But we know that the best schools often have waiting lists and we need something for Asher now rather than in months. God provided our lovely carers in NZ and we know He will again. I will be ringing first thing in the morning! Please pray.
UPDATE Rang the school this morning and looks like they may have a space for two day a week! Perfect! We have a tour and a meeting with the director on Monday morning at 10am.

We are also putting our feelers our for a car. Currently a very kind person has lent us his mustang! Super cool but we feel nervous driving it in the snow. Getting a car is such a big decision and we want to make the best and wise choice knowing we are spending Trust money. Do we lease/buy/long term hire? We have a contact at the local Ford dealership who has been very understanding of our situation plus we have others looking too.

Most importantly our hearts are heavy at the wait for organs. We so desperately want them to come while the family is here and have been praying and praying that this might happen. I can’t fully communicate the ins and outs of the situation but the team are working hard to make sure Aria is in the best possible place for getting the right organs. We are overwhelmed at the idea of doing transplant without the family but we pray equally as hard that if that is God’s choice for us He will strengthen us.
UPDATE Aria will get another transfusion on Saturday and will remain Status One for another week. Phew! We don’t want her to drop down the list. Aria had a good sleep last night and is pretty good this morning. Lots of funny photos which I will post soon.

Aria has had a so so day. A few moments of smiling and happiness but all and all not a happy chap. We so want a better life for her and it is so hard to watch her suffer.

Anyway- those are the issues on our hearts. Please join us if you will in petitioning our God for our needs. We are leaving it in His hands.

Thank you as always for your support!

Aria is sound asleep next to me, it is 7pm here and I am hoping she is out for the night. She had a good day, still not as happy as she was but doing ok. Hamish was at rounds today and got some more info about where she sits on the nationwide list for organs. Safe to say she is very very high but I must admit I don’t really understand all the ins and outs of listing. Keeping hoping that she will get transplanted so won’t have to ask them!

Interestingly (and stop reading if you are eating your lunch) they are testing Aria for c-Diff bacteria. I think she must of culture this ages ago in NZ, I can’t remember the details. But she has been in isolation since we have got here. I kept wondering why everyone was gloving and gowning up. But yet she is able to go on walks all around the hospital. Ummm I am confused. Anyway back to the stop eating your lunch part. They have to get a stool sample. Which she is actually doing regularly since they started the flushing up the back end. So for the first time in her life she is telling us she is doing poos. So they got a decent sample today which I am pretty sure will come back negative.

Anyway, nothing particularly exciting to report. We are still battling to get our internet banking going. I have been told that NZ has one of the most advanced banking systems in the world so I think we have been spoiled! We took Asher to McDonalds today so he could play in their playground. Apart from being able to get Dr Pepper from the drink machine it was pretty much the same as NZ.

Aria is no longer sound asleep. One of the frustrating things about being in hospital is the multiple people that come in and out of the room while you are trying to get your child to sleep. Anyway better go.

9pm update- Cute story.
Me: “Aria mummy is going to the toilet, I will be one minute”
Me: “Hi Aria, I am back”
Aria: “Mummy- Aria missed you!”
Me: “You’re sweet Aria, I was only gone a minute :)”
Aria: “Hold my hand now”
Aria nods back off to sleep
Ok now she is sleeping soundly!

Today I am very much reminded of this verse

Ecclesiastes 7:14 (New International Version)

14 When times are good, be happy;
but when times are bad, consider:
God has made the one
as well as the other.
Therefore, a man cannot discover
anything about his future

Looks like that happy settled Aria of old is gone and the unhappy, unsettle Aria has returned. Nothing clinical to pin this down too of course except that her liver is failing and she is a sick little girl. It was nice while it lasted of course. God has made both situations.

Aria has been listed at Status One for almost 5 weeks now. During that time we have only got one offer of organs. I don’t want to say to much but the team are trying a new approach to see if they will get more calls.

Today I just find myself back to so desperately wanting that transplant for Aria. While she is happy I don’t pray as hard. Confession time? I just enjoy her and a tiny part of my doesn’t want transplant because happy Aria will be replaced with very sick Aria. Having four organs removed and replaced makes someone (hopefully only temporarily) pretty under the weather. That is the thinking that comes with only living in the day as we have learned to do.

Only God knows the future for Aria and the exact moment when we will get ‘The Call’ Sometimes I wonder if I think of new and creative ways to pray He will hear me more. That’s human thinking for you. Maybe if I prayed every hour of every day them might come quicker. Sigh.

It is draining. She is so tough to deal with and I find myself frustrated and guilty. Frustrated that my life isn’t easier and guilty because it is Aria that is actually suffering and my only emotion should be compassion for her.

Anyway, it is 11.30am here and Aria is sleeping. better go.

Todays events were proceeded by the events of the night. And me decided to sleep in the bathroom at midnight. No I wasn’t sick but I was sick and tired of the constant sound of running water coming from the radiator next to our bed. Omaha has been having such bad weather that the heat system has been working over time and and because of a design fault in the building the water flows thru the pipes and drives us crazy like some kinda of water torture.

Needless to say after complaining about it over 6 times and resorting to sleeping in the bathroom because it was the only quiet place Hamish went downstairs at midnight and demanded a new room. Anyway we finally managed some sleep with Hamish staying back with Ash in the old room and me getting a few hours downstairs.

So after a discussion with the building manager the only solution (short of tearing down the walls) is to move room downstairs to the 6th floor. What a mission! Lots of stuff we brought from NZ and we had filled every cupboard. So thankfully Aunty, Nana and Poppa were on hand to help. Can’t imagine how Hamish and I would of managed moving and the children too.

We also have a new address, it has only changed by one digit:
MacDonald/Room Number 6724
Lied Transplant Center
987600 Nebraska Medical Center
Omaha NE 68198-7600
USA

Anyway. Aria wasn’t quite her sparky self today which is a bit concerning, I hope she is just tired. No news to report really, just waiting for organs. Sigh.

As you can probably tell from the lack of updates in the last few days, life is pretty uneventful at the moment.

I guess the big news is that Aria got a blood transfusion yesterday which put her back on the Status One list for another week. This is good as it increases the chances of getting organs and it keeps her in PICU so we don’t have to wrestle with the logistics of Aria staying in our room for another week at least.

Apart from this the last 24 hours has seen Anita and I have chances to get out and about. We have spent time out with our friends Carol and Cordell at their house, they are letting our family stay their and are wonderfully gracious hosts. We’ve also been able to do some grocery shopping and do some other shopping with various people. It has been nice doing things as a couple without the kids, or even with Asher tagging along.

Another privilege we had to enjoy was going to church together this morning at Life Springs Church. It was great to meet some people who have been busy praying for us and have the opportunity to thank them in person. It is really interesting to hear how Aria continues to touch people’s hearts.

Finally we went to the Outback Steakhouse tonight, it’s an Australian themed restaurant they have here in the USA. It’s not all that Australian for those familiar with Australia but it was familiar enough to give us a bit of a tug on our hearts. I got to have a genuine New Zealand Rack of Lamb, it was really good to have some home-like food. Anita and I both agreed that it was the best food we’ve had here so far.

We’ve been enabled to do these things because of our family’s presence here and their willingness to help us out. Aria is very nice to us, letting us go out and taking care of Nana and Poppa and Auntie for us. Aria seems to enjoy having the family here and like showing them around. The family is also very brave helping Aria out through her procedures too, I think that Aria understands that it isn’t their area of expertise and makes an extra effort to be good, she is very thoughtful like that.

Anywho, we continue to hope and pray that Organs will come while the family is here, but we know that they will come at the right time, family or no family.

Hamish is now the proud holder of a state of Nebraska drivers license. He sat a written, practical and vision test and passed no trouble at all.

Aria is also being transfused tomorrow and will remain in PICU and Status one for another week.

So both of them did well today.

Of course we are a little disappointed that there will be no discharge or trips out of the hospital for Aria but we never really thought it would happen. It was nice to dream though. When Dr L told us about the blood transfusion I joked ‘well we were going to go to the zoo but I guess Status one comes first’ Kinda relieved because it buys an extra week plus we had to relearn TPN and figure out how all four of us were going to squish into into our Lied room and remain sane.

Aria continues to do really well and full of life. Which is great of course and means her character is back. She decided she would refused to ‘feet walk’ to the door and dropped out her legs so I had to sit her on the PICU floor in the hallway. She then proceeded to ‘bum shuffle’ like she did when she was a baby (and didn’t crawl) to get to the door. This is her stubborn nature which we love and is what gets her thru the hard times but we need to be smart in how to manage her.

She sat nicely and did Preschool today. They have early childhood teachers come in and do lessons and activities. She was really excited to do Preschool today and participated nicely. She played dollies with the teacher and in the end decided the baby should go to sleep in the teapot with the lid as a blanket. Kinda funny.

All and all we are really pleased with how things are going and very excited to have Aria back. She is so well and had another good sleep last night. Things are looking bright! Bring on transplant!

Another great day in blizzardy Omaha.

Where to start, Aria had a great nights sleep last night. She went to sleep at about 11pm and slept right through to 5.30am in the morning. For a long while Aria’s nights have been very disturbed by pain and discomfort, but last night she slept like a baby.

This flowed onto an energetic and adventurous morning. For the first time since we got on the plane in Auckland, Aria was fully dressed today!! Now there are some of you that find that surprising to hear, but Aria normally rocks around the hospital in a onesies and blanket or a hospital gown and blanket. Not today, Aria asked for her purple shoes and some socks so she could go walking on her feet. She also chose some pants and a top to wear and topped it all off with her favourite hat.

Aria then got up and walked to her pram. The new rule is that Aria has to walk to her pram and back to get walks off the ward. This arrangement is working beautifully and Aria is up and off racing.

After our walk while we waited for rounds, Aria and I got her tool box out and we stood at the end of the bed for about ten minutes ‘fixing’ her bed. I was amazed at her increased stamina and ambition.

Just before lunch we left Aria with Auntie for a while so Anita could satisfy her BBQ craving. When we got back Auntie and the physiotherapist has Aria doing even more walking. Aria walked up and down the halls of PICU in front of the nurses station while all the nurses ooohed and aaahed and cheered her on.

It has been a great day, Aria is as good as we’ve seen her in months. All this walking is building her strength which is vital pre-transplant, so while we eagerly anticipate transplant this delay is serving well to get Aria into the best possible shape for it. Just another example of God having a plan for each and every circumstance.