2009 December - Aria MacDonald

Today marked a new decline in Aria’s health and we are so sad.

Asher and I had a brillant day out at Carol and Cordells. It all seems a million years ago now strangely but in some ways I am so thankful because it gave me strenght to face what I was about to see.

Hamish and Asher were going to go the Cornhuskers game. I got home and Hamish was rushing out the door and really stressed after a terrible day with Aria. He wanted to escape and I decided to be brave and take look after both kids. I really wanted him to get some time out as I had today while Carol looked after Asher while Fran and I went shopping. Because Hamish had been with Aria all day we think he perhaps didn’t notice what had and put it down to tiredness.

Asher and I went to see Aria around 6pm. As soon as I saw her I noticed something was up. She wasn’t making eye contact with me. She would look at my eyes but had this vauge crazy look in her eyes. Reminded me very much of her sodium overdose. Then she started saying the same words over and over. After about half an hour I realised I was out of my depth so buzzed the nurse and she agree that Aria was off.

Everyone is surprised Aria has remained so well and her mental status has been fine. Until today. I had to call Hamish back because we have been dreading this part of her condition and hoped it wouldn’t come. When you have liver disease it does effect the brain, not permanently, but the mental state of the person does decline.

Hamish had to come back and took Asher and I proceeded to the the same conversation with Aria for over an hour
Aria “Finished!”
Me “Are you finished?”
Aria “Yeah”
Me “Ok then”
Pause, repeat.

It was awful and horrible and horrible and horrible.

The ammonia in her blood is high and the give her a med that binds the ammonia to the contents in her stomach and she poos it out. But hello she can’t poo! So they are going to have to come up with something new, Hamish is there waiting for that answer.

There is numbness as I write this, like perhaps I am talking about someones else child.

I was speaking to my sister today and she was saying how she looks forward to the real Aria being back after transplant. Hamish and I know that the real Aria is now left the building and what we currently have it this strange crazy Aria. Our little girl is gone now and wouldn’t be back without a transplant. Perhaps she will have more lucid moments, maybe this is just today. Looking foward to rounds tomorrow to hear what the doctors have to say.

1 Peter 5:6,7
6Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

In my heart I feel the need to tell God He is wrong and that organs should have arrived weeks ago. But He is God and I am me. He loves me and Aria and Hamish and Asher. It is His call. But I just want to beg Him not to take her but please keep her with us and return her to us. See that smiling girl to the right of your screen? That’s Aria.

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.

Today is a much better day for Aria.

Now we have met all four transplant surgeons. They rotate Mon-Friday and Sat/Sun. They can get a call any time of the day or night to do a transplant so they need to be fresh I suppose. Hamish met Mr Mercer this morning and they had a nice chat. Hamish asked about where Aria is at and how Dr M thinks she is going. The doctor explained that Aria is actually doing ok and while it is awful to see her bleeding things are alright. Obviously she is a sick little girl and she is in need of a transplant but she has time on her side. Plus everyone is surprised she hasn’t got organs yet but there are lots of factors in play for the perfect organs.

We had a nice day, Aria was a good girl. It was Hamish’s day on but I looked after Aria while he and Asher went to Wal-mart for groceries. We had a nice time and she gave me cuddles and kisses which was really nice. She is such a sweetie. She helped with the washing too. She got a Dora nightie for Christmas from the Arms and she asked to wear it and told Hamish she washed it 🙂

Anyway- thanks for all the comments and support. Sometimes it is nice to put it all out there on the website and update you all. This blog it about our struggles and strength but most importantly the courage of one little girl. We are not always looking for advice rather ‘we are feeling for you and thinking of you’. I hope that makes sense.

Aria is awesome. After the drama of this morning she recovered pretty well. Actually she was fine, it was me that was dramatised, Aria seems to take it in her stride really well. I continue to learn from this brave little girl.

She needed a bath so Aria had a PICU spa day. There was the nurse and two other nurse techs and myself. I joked to her that people pay good money to have four people pamper them at the same time. We washed her and then washed her hair. She did really well and let two nurses work on her hair while I read her a book. They managed to get the big dreadlock out of the back of her hair. I was so grateful cause I wasn’t looking forward to tackling it. But now it will be easier to manage.

We had had visitors, Carol and Fran which was really nice and we took them on a ticky tour of the hospital.

Now Aria is sitting on the hotel bed and her and Asher are watching TV. It is a tiny taste of normal, really nice.

Thanks for all the beautiful comments, they really lift our day and remind us we are not alone.

Those organs need to come. We are nervous to ask the big questions and just want to know Aria has time to wait. I think she does, she didn’t need a blood transfusion today, so that was great news, particularly after such a big bleed.

God has brought us so very far. I have this stubborn peace in my heart, that is almost annoying, that Aria will get organs. Annoying because it is just a waiting game.

We got lots of brilliant presents this year, Laurie who is a friend and supporter of Aria’s painted this awesome picture of the kids, I will post a picture of it. She painted this verse around the sides.

Psalm 34:4

4 I sought the LORD, and he answered me;
he delivered me from all my fears.

Thank you Laurie, this means a lot. This is an awesome verse, we pray for deliverance.

Today is a bleeding day for Aria. Today is my day on with her but Hamish was going to do a few hours so I could get to church with Asher. So I was up early and over to see her.

Aria is a complete legend, honestly just sits there and says ‘oh no bleeding’ and she vomits blood and as it pours out of her nose. Not much drama, just deals with it.

The pressure of the blood and clots was so great that her g tube completely popped out and there was blood everywhere. It got into the threads of her line too which is really concerning. I hope she doesn’t get a line infection because then she will have to come off this list until it clears.

Hamish turned up at the end of the drama with Asher who had just woken up. This was around 9.20 and I realised there was no way I could change and feed him and myself and get out the door for 10am for church. So I just sat on the floor and cried while Asher sat beautifully and Hamish cleaned up Aria.

We wonder how long she can go on like this for. We could ask the doctors but probably don’t want to hear the answer. But at some point we must because if organs don’t come we can’t do this alone.

So I guess today will be another transfusion, she seems to have them every 2 days. That will buy her another week at Status One.

God knows what she needs and He is good. It will be His decision as to whether she get to extend her earthly life or not. We take comfort in that. But it is hugely difficult, particulary the fact it is just me and Hamish. We don’t have the luxury of sick days or even time to think or talk or plan. My mind boogles at how on earth we are going to manage.

There is a sense of relief that Christmas is over and we got thru the day just fine as we thought we would.
It wasn’t easy. We Skyped back home and spoke to my sister and Hamish’s family. Hamish found it a bit difficult to be away from them. For me it was my day on with Aria so I didn’t have time to absorb it all.

For me I certainly missed the big feast that come on Christmas Day! Eating a scoop of mashed potato and a tiny piece of tasteless pork loin did not hit the spot. I said to Hamish the first thing I am going to do when we get into an apartment is cook a big roast with all the trimmings. We are still getting used to the food, mainly because we don’t have cooking facilities and have to dine on hospital cafe food. But we have been blessed with homecooked American food which has been different to food as home but just as yummy.

Asher has lost weight since being here. So we are just feeding him whatever he will eat. Top of the list is donuts and cheeseburgers! I know, shocking but he does eat fruit and drink water so it isn’t too bad. As long as there are calories going in we are happy. I jumped on the scales and as I had suspected I had lost around 3kgs. Unlike Asher I could well do with it. The hospital cafe does have an excellent salad bar where you make your own so I have been living on that and bagels and cream cheese. Just a little bit because the cream cheese here has about 20% of the favour the cream cheese at home does.

Aria is ok today. No bleeds for two days so that is great. She is pretty sleepy but that isn’t surprising because she didn’t sleep a wink yesterday from 7am – 11pm when I made her close her eyes and hold my hand and she finally fell asleep.

Asher and I are off to church tomorrow so that is great, really looking forward to it. Going with Carol and hopefully catching up with her neighbour Fran. I rang Fran today because she had sent us a very kind christmas present and Carol had told me she was English. We spoke for awhile and it was so nice. Hope you don’t mind me saying Fran! Her accent was like one of Aria’s doctors at home, Dr K and it was funny cause those little things bring back memories of home. I find it very weird I miss the Starship crew but it seems strange to be doing hospital without them. Lots of history I suppose but I feel like perhaps one of them (or all!) might come sailing thru the door at all stage, yet I know they won’t, it’s hard. They are our people and Aria’s people who have worked hard to get us here.

Anyway, there is HEAPS of snow. I am very keen to get out in it and might dress Asher up tomorrow arvo in his snow gear (thanks to some christmas presents) and get out in it.

Well to many of you, you’ve had your Christmas day (hope it was awesome), but for us its just beginning.

Aria will be over shortly to open the mountain of gifts so many generous people, friends, family and strangers have given her and Asher.

Aria seems to be ok this morning from all reports so hopefully she will be able to enjoy things this morning.

The present haul- thank you so much for all the beautiful presents. Some came in boxes to our new address and some were brought from NZ in our suitcases. I hope to contact you all personally soon, but should be get ‘the call’ tonight please know we are very grateful.

We had a great day today with Aria, you might have already seen the video we made with Aria and Asher. Aria had more energy, more laughs and more smiles than she has in a long time.

Anita even managed to wash Aria’s hair and untangle the brambles in the back. All this while she was sitting in bed drawing and playing with us. It was neat to have a bit of the old Aria back for an afternoon.

She was really talkative too, asking to do things, and telling Asher and I stories about what Anita and her had been doing that day.

We really hope that post transplant she is just like that all the time.

Not entirely sure what brought the good times on, maybe it was just God giving us a bit of a pick up before the holiday season starts.

Anyway, hope you all have a great Christmas tomorrow for all the NZers, enjoy the sun for us.

CLICK HERE FOR A MACDONALD YOUTUBE CHRISTMAS MESSAGE

Happy Christmas Australia and New Zealand!! Perhaps you will all be to busy opening presents and chowing down tons of beautiful kiwi kai to check in on us! I hope so!!

It is 9am on Christmas Eve here. So if you wanted to check in on your boxing day and wish us a Merry Christmas on our christmas day that would be awesome!

Today is about celebrating a God who loves to give His people good gifts. The best gift? The gift of His Son whose birth we celebrate today! Praise Him! May God also be pleased to give Aria the gift of a long earthly life this Christmas.

We are hoping Christmas Eve bring another day like yesterday for Aria, she was such fun as Hamish mentioned below. A glimpse of the past and the future with our precious girl.

UPDATE
It was not to be. Aria has been bleeding quite a bit this morning and she has had another blood transfusion. Her last one was only two days ago. Again, there are positives, she is top of the list again for another week and another week in PICU.
It is really difficult. Because there is blood in her stomach it clots and her g tube doesn’t drain. So the junk in her tummy builds and then she vomits it up. But when she vomits she coughs and this sets off the nose bleeds. It is awful for her and horrible to watch.
The team got an offer of organs last night for Aria. But they turned them down because their function wasn’t good. They told us at rounds this morning so we weren’t involved in the process. But it is a good sign that we have got a call, it means Aria are on the radar. We want good organs for Aria not just any organs. But of course we were reminded that a family has lost a child at a very difficult time of year. So our prayers are with them for peace and comfort.

In other news- it is snowing and it looks amazing!!

Tomorrow is Christmas day for us, we hope Aria is up to opening presents and having a fun day.

We keep hearing about the many people checking our blog daily. So we try to please you Aria fans with the latest news.

Except that we know the perhaps ‘pleased’ isn’t the word the we might use. Then maybe it is. Aria had another blood transfusion today which means she stays Status One for another week and at the very top of the list and another week in PICU. But the downside is is that she had another blood transfusion today because it appears as though she is bleeding thru her stomach. When a person has a hard scarred liver the body redirects the blood flow thru less used veins and back thru the stomach. Actually I know there are doctors and nurses reading this and they will probably give my explanation a 1/10!

So they are trying a new med to slow down blood supply and there is another one they can use if that doesn’t work. Beta blockers for those in the know. So I commented that ‘at least we have a few cards to play’. The reply came ‘yes we do but we are playing them earlier than we would of liked’ The nurse practitioner rang the transplant surgeon and informed him of Aria’s new developments and told him Aria needed organs tonight. Even though he is the Professor he isn’t God and only God know when they will come.

There is a snow storm coming to Omaha and we are pleased to be safety tucked away in hospital. Still haven’t checked the cafe is open for christmas dinner!

Hamish finished the bank account opening and we now have accounts. We have internet banking and debit cards. The lady at the branch asked we would like some temporary cheques (or checks) and we said ‘Ummm no’ Of course Hamish being the cheeky pants he is said wanted to say ‘Umm no is this the 1980s who uses cheques anymore’ Ha ha. At home we rarely used cash and now we are juggling heaps of one cent pieces and strange notes that all look the same.

Aria managed some smiles yesterday and even a wee giggle thanks to the antics of her crazy little brother. There are these drinking fountains around the place and Ash likes to try and turn two at the same time and splash water on his face (will post a pic later so you know what I mean). And he likes to ride baggage carriers, standing up while we push him (slowly- don’t worry). All very funny to Miss Aria.

Uncle Bruce- yes we think an extended whanau trip to Disneyland would be epic and O for awesome! I can imagine all five kids on the teacups ride until someone lost their lunch. ha ha