2009 December - Aria MacDonald

It has been a rough couple of days. Aria seems to run in cycles and we are currently in a down cycle. Hamish mentioned this yesterday. Our girl is suffering and very irritable. We did have a good couple of days actually where she was managing sleep at night. But she is back to having her meltdowns. It is painful to watch because she is pretty much inconsolable yet she reaches up her arms and yells ‘help help’. Then the morphine kicks in and she is ok again. My eyes are filled with tears as I write this because it is so hard.

The past three nights nights I have had to call it quits at about 2am or 3am when I realised I wasn’t going to get to sleep. Aria does manage some sleep but wakes up yelling like ‘bummer I am awake’ So I can’t get to sleep so wired am I. I believe God made mothers to response to their babies cries and it seems hardwired within me. I feel this surge of pain and perhaps adrenaline whenever I here that cry and I remain on edge trying to fix the cries I know I can’t.

We had a honest discussion with the PICU nursing manager and our transplant co-ord today. Never ever had we left Aria day or night without us or nana. But now we are getting to the point where we aren’t getting any sleep at all at night. So we are going to try to leave her with the night nurse from around midnight to 7ish. Aria is still in PICU and getting one on one nursing so she isn’t alone. We have talked to Aria about this and she understands were we are and the nurse will look after her. We are nervous about what people at the hospital will think of us. Because we are new here they don’t know our history but they assured us we were making the right decision. It won’t be every night. But being sleep deprived and pushed to our mental and physical limits isn’t healthy given our situation.

Asher had a great day today at the Arms place placing with Praja and Cury. He ate! And he came home happy. In fact he cried when we got to the hotel room, I think he was disappointed 🙁 So happy for him to be out of these four walls and super grateful to Angie and family for having him.

Whilst I honestly believe I don’t say this in bitterness, I feel like our family has been robbed of many many things. Dreams have been stolen. I was reading Joel 2 particularly verse 21-26, in hope and praise.

Be not afraid, O land;
be glad and rejoice.
Surely the LORD has done great things.

22 Be not afraid, O wild animals,
for the open pastures are becoming green.
The trees are bearing their fruit;
the fig tree and the vine yield their riches.

We are getting close! We are in Omaha, surely the Lord has done great things from those dark early days. Bringing hope, Dr E, preserving Aria’s life many many times, bringing generous fundraising dollars, amazing people into our lives, providing funding (Yes! still excited about that) and getting Aria’s listed for transplant! The Aria’s tree is blossoming but there is still a huge hurdle to jump.

24 The threshing floors will be filled with grain;
the vats will overflow with new wine and oil.

25 “I will repay you for the years the locusts have eaten—

My prayer is- that one day God might see fit to restore us and give us back the years that have been stolen. Not that we deserve it, but in His mercy we pray He might Restore Aria, Restore Asher and Restore Us.

Two things I keep in my head- Disneyland and Hawaii. We very much hope to get to Disneyland and for the kids to have a super wonderful time and for us to enjoy their joy. Together all four of us. And Hawaii, me and Hamish, sorry kids we love you but you aren’t invited. Maybe neither of those things will happen or maybe it will be Rainbows End and Hamilton. But restoration just the same.

One of the great things about being a Christian is that you are part of a huge family. We are all children of God and we are all brothers and sisters in a real sense as the blood of Jesus. unites us all. Tonight Asher and I went to a Christmas celebration at Grace Reformed Church. This is the church which has been so welcoming of us, the people who picked us up from the airport and the people who have lent us a car.

Walking into this new church, I immediately felt at home, and after the organised time finished I was warmly greeted and embraced by that community. I was asked if if it was weird or overwhelming and I had to honestly answer that it was not. It just felt right. It’s not just because it was sort of familiar, I have had the same feeling in Asia, in places I haven’t been able to say more than ten words and had no idea what was going on. There is just something special about the connection between brothers and sisters in Christ.

Asher was really funny, after being shy for just long enough for the organised schedule to be completed, he proceeded to head off and explore, luckily a couple of people at the church took him under their wing and traipsed around after him. The boy has no fear, shame or sense of occasion, great really for our situation. I am reminded of how blessed we are that he is part of our family. He is going to spend the day tomorrow with the Arms family, he should have a great time with their kids, thomas’s and dogs. Anita and I are looking forward to a day where we might be able to have a bit more R & R.

On the Aria front we continue to wait and pray and long for organs. She had some pretty hairy moments today, including one which meant we couldn’t talk to some new friends who came to visit. It is so hard seeing our nice little girl acting out and struggling with her situation so much. It is hard because her behaviour is really questionable and sometimes out right rude and infuriating, but we know that most of it is because she is just so miserable. We long for the day when she doesn’t have those struggles and when her being naughty will just be a kid being naughty. We also look forward to having our little girl back, and not this poor image of our sweet darling girl.

Please continue to petition God for organs, God hears and answers our prayers.

We were on a family walk around the hospital and Aria decided she wanted to go outside!  We quizzed her a bit ‘are you sure?’ ‘it is cold’ etc etc.  She was determined and so we went back to the room for coats and hats.  She put hers on and so we were sure she wanted to get outside

We only managed a couple of mins before it started to snow a bit. But it was fun to be outside and the cold was refreshing. This is a perk of Omaha V Auckland. We are able to get more family time together being that there is only a 3 min walk seperating us V a 25 min car trip. Downside being there are only short periods of time because we don’t have anyone to watch either child to focus on the other one but we are managing.

Hope to post more photos in the coming days

Did you know Aria was on the front page of the Dom Post yesterday!? Pretty cool

Today was a good day for Asher. I know this is an Aria blog but today was a more interesting day for Asher.

However, before we get to Asher’s day I’ll update you on Aria. Aria is about the same, she has good days and bad days and today wasn’t one of her best. She had a not so great experience with a physical therapist today. The one who had been doing some good stuff with Aria has left on maternity leave, the replacement today didn’t do such a good job, Aria was quite traumatised by the experience and we were definitely not impressed. Hopefully things won’t go like that again or we’ll be asking for a new PT.

I was on Asher duty today, we have been keeping him away from PICU because of his dodgy tummy. I get a text from Anita saying that Aria wants Asher to come down to level 2 of the hospital to see some dogs. Once a week some dogs come in for some Pet Therapy. It was very sweet of Aria to think of Asher and Asher loved it. There were three dogs there, two little fluff balls and a larger dog. Aria is a bit scared of dogs so only watched from a distance, but she did enjoy watching Asher as he hugged, shook hands and patted the dogs. When the big dog had to go, he even followed it halfway down the corridor to the exit.

After this Asher and I decided that we would go outside for a walk. We need to sort out bank accounts, and there is a bank right outside the hospital so I wandered down there. There is still quite a bit of snow on the ground and the temperature was hovering around freezing. However I like the cold and Asher is starting to get used to it (helped by a big thick Jacket he just got). We had a good experience at the bank and I will be able to get the accounts open on Monday hopefully. As the bank is close to the hospital it has exposure to and experience in handling internationals needing bank accounts.

After that we wandered further to the magical golden arches (McDonald’s). Asher had been pointing to them from Aria’s room for about a week now and I must confess to a weakness for Mickey D’s so we went and got some early dinner. I have to say it was exactly like NZ Mcd’s except they have Dr Pepper and Blue Powerade as options in their drink fountains, YUM (powerade not Dr Pepper).

Anyway it was great to go for a walk and get the bank accounts lined up for next week.

If you haven’t seen Aria’s article in the Dominion Post yet, you can see it here.

Aria in the Dom Post

Asher and I went to Walmart today! It was great, lots of fun.  Our lovely new friend Carol took us which was fab.  She also took Asher for a walk while I did some shopping.  It wasn’t as overwhelming as I thought it would be.  It was pretty much the same as the Warehouse in Sylvia Park except blue instead of red 🙂

Carol also brought lots of goodies with her including some presents for the kids (tucked away for Christmas Day) from her lovely neighbour (super kind!) And apple butter!!!  Like lemon butter but more like spicy apple sauce.  Anyway very nice.

The Dominion Post is doing a story on Aria which be in the Saturday edition of the paper and available online Saturday morning NZ time and Friday Omaha time.  The lovely media lady, Andrea at the hospital took a family shot of us.  I will put it up tomorrow but you will see it online.  Aria is very very yellow, I was quite shocked.  She was trying to smile too which was super cute.

The Omaha World Herald called as well wanting to do a story but Andrea declined on our behalf.  We can wait until after transplant I think and share our story then.

Aria actually had a great 24 hours and we are feeling upbeat.  If Aria is doing well then Hamish and I feel better and everything seems manageable.  We are on top of her pain and she is managing walking still and talking heaps.  She has some fluid on her lungs which they are trying to shift so it doesn’t get bugs in it.  She also had more blood today which means she remains a Status One for another 7 days.  Great news because that makes her able to get organs countrywide not just by region.  Although the team doesn’t know who else is also status one and it depends on size and blood type too.  So there may still be a reasonable wait but hopefully soon!  Although it is still difficult to hope for such a thing.  We are hoping for a donation of life not a passing of one.  I hope that makes sense.

We have been getting mail which is completely awesome and the highlight of our days.  Got two packages from the Burtons including their family newsletter which I must of read ten times and giggled at Karla’s little jokes.  But it was fab to read about someone else for a change!  Also got gifts from Jodee and Matisse.  Matisse passed on her toy BBQ to Aria cause she does real cooking now!  Cute!  Also Lori sent us a wonderful package full of super useful things that had been floating around in my head to buy.  Lori spent time here with her son Caed so knew exactly what we needed from air freshener to a roll of quarters for doing washing!

Anyway thanks again for the comment and support.

Not too much new to report on the Aria front. She still has the sporadic temperatures happening, and the medical team continue to run tests of various types to see if they can locate a cause. Aria as usual is rising to the occasion and acting like the champion she is. We are hoping nothing becomes of it as a infection, means she will be off the list till it is well and truly gone.

On another note thanks to those of you who has expressed sympathy and tried to put themselves in our shoes when commenting on the previous post. It is nice to hear people trying to understand the difficult journey we are on and saying it is ok to struggle.

For those who pointed us back to God, rest assured that we are still resting in God’s hands and timing, but we are struggling with the circumstances surrounding that. It is ok to struggle and say things seem too tough and to wish it could be another way or different. We are trying to make the best of our circumstances, but they are not circumstances we would of chosen to put ourselves in and not circumstances that are easy to explain to others. We accept this is where God has taken us and he is right to do that, but he doesn’t always put you in situations you enjoy.

I’m reminded of Jesus in the Garden of Gethsemane struggling with God in prayer and asking to have the cup removed from him. Even Jesus went through trying and emotional times, if it’s good enough for Jesus it’s good enough for us.

Warning : this post won’t contribute to your festive spirit.

We couldn’t have arrived at the worst possible time of year.

Hamish and I were talking last night about our christmas plans or lack thereof.  The reality is that we will be here for Christmas.  We will be spending it in hospital.  Worst still in a foreign hospital with our pretty sick little girl with no family.  I know- sob story right?  We joked tonight that we actually better check the hospital cafe is open cause we may be feasting on hot dogs and reeses pieces from the convenience store!

Tonight it came crashing home to me that we are foreigners in a strange land.  I won’t go into it much cause I don’t know who reads this and I would hate to offend or come off ungrateful but needless to say life is difficult this time of year.

Both of Hamish and I are finding being stuck in hospital without being able to get out and being dependent on others really difficult.  We could get a car but given that it is snowing and driving on the opposite side of the road and parking fees it doesn’t make sense right now and would be unwise.  But it is hard having independence taking away from you and not being able to control your environment.  And being parents 24/7 too, I know it sounds awful but one of us always has a child so we are not getting anytime together or anytime alone.

But I just need to keep reminding myself that at least our family is together and not separated like lots of transplant families.  In some ways this life is easier than living in Auckland because there is no longer a 20min+ drive keeping our family apart.

This was always doing to be difficult, have I said that before?  But I will be super glad when christmas is over and the reminder that christmas is going to be an epic fail is gone.  Always glad that our kids are young enough not to have any idea they are missing out.  It is only Hamish and I that know we are away from family and home, thats good, great infact.

Back to Aria.  She actually had a good day.  Still struggling with pain but as long as the morphine comes in time she is doing ok.  Her lips are really dry and cracked so they bleed easily and she looks terrible. But apart from that she managed more walking today, a couple of metres even out of her room and across the hallway!  The PT is excellent for getting her up and moving, something everyone else has struggled with including us.

Hamish here, with our new laptop I’ve lost my password to enter these things under my own name. With all the new fangled technologies you end up with about 1541 passwords and if it is not the same as the other 1540 it’s pretty tough to remember.

Anywho, it’s Monday night here and we’ve had an interesting 24 hours.

Firstly Aria slept a lot yesterday during the day, we were putting it down to just being sick, WRONG, it was her preparing for being up till 4.45am without as much as a nap. I finally called it quits at about 4.30am and tagged Anita in. She finally got to sleep just after Anita arrived, phew.

Secondly we encountered the peculiarities of the american medical administration. In America they can’t prescribe IV Panadol. This has been a useful tool for treating temperatures and pain in Aria and similar kids for sometime, but for some reason the US Drug administration (USFDA?) hasn’t approved it’s use. Strange a country pushing the envelope in a lot of areas doesn’t allow the use of a fairly simple ane straight forward drug.

There was also some talk of trying to suck some of the fluid in Aria’s tummy region out this morning. An ultrasound was done but no word on whether they are going to proceed. Hopefully it would relieve some of the discomfort.

Finally the reason for the post title, today Aria did a lot of walking (well relative to her normal zip, zero, zilch). The physical therapist who has taken Aria on came to see her this morning just after her ultrasound. I was a little nervous about things, but Aria blew me away with what she was able to accomplish. She wasn’t necessarily happy about doing it but she did it none the less. The PT was really good with her, challenging, encouraging, manipulating and praising her to get up and about. It’s important Aria is as strong and resilient as possible for the transplant when it comes so we are glad to see some success in this area. Just now Anita reports Aria is on her feet again, YAY for you Aria.

The second to last point of note is that Anita and Asher are both a wee bit poorly at the moment, please add those two to your prayers to, for a quick recovery.

Finally, one of the transplant co-coordinators said she was shocked we didn’t get organs over the weekend. We aren’t; we’ll get them at precisely the right time in God’s eyes and we can live with that.

As you can tell I am feeling super creative today!

Aria is in PICU and will be for another 5 nights this is so she is at the top of the transplant list. Hamish and I are taking it night by night as to whether we stay with her not depending on Aria and the nurses feedback. I told her last night I was going to go back to the hotel room and stay with Ashie and Daddy and she said bye bye and gave me directions as to how to get back to the room!! So she was fine with me leaving and when I returned at 7am she was happy and said the nurse read her 3 books.

She is doing well apart from when she is in pain and needs morphine and then she has a meltdown. Which is completely understandable because she can’t get comfortable. I so wish I could swap bodies with her and fully understand how difficult her life must be.

We have had visitors today which has been great. Randy Arms and his family came to meet us and brought us some yummy greek food. The first time in ages I actually felt like we were eating food familiar to us!  Asher had a great time with their kids and I was so nice to see him run around happily playing with other kids!!  Angie and Praja came back to meet Aria.  Praja is just 4 so her and Aria had a bit in common, a love of Dora particularly.  Aria sat and managed a bit of conversation and gave Praja one of her Wot Wot stickers!  We were so pleased given just moments before she was having a meltdown because of the pain.

Also Cordell and Carol came to meet us and brought us some microwave cooking things.  Very handy as the hotel doesn’t have that kind of thing, I guess they assume people will eat from the cafe.

Both families were so kind and warm and there was a sense of instant friendship.  We were so grateful they just came and ‘did’.  Often it is so hard to pick up the phone and courage to ask for help and it is lovely when people ‘just do’.

Still got to get to Walmart but got to the supermarket thanks to Amanda.  It was an overwhelming and strange experience.  So hard to know what to buy.   Such strange things.  Like a freezer full of ‘cool whip’ apparently used instead of whipped cream.  I think what we would call mock cream.  Managed to buy Asher some organic yogurt which he is eating just fine, he wouldn’t touch the other stuff.  Also brought some cheese his other fave food but I think the orange colour puts him off.  Might see if I can get organic stuff.   We are getting there slowly with the food.

Anyway, we are still praying for donor organs and soon.  It is hard living like this.  No idea how Jodee and family have managed three years!!!  In God’s perfect timing we are sure.

It is Saturday morning and Aria spend the night in PICU.  The nurses said she slept well and Hamish and I managed about 8 hours sleep.  It feels good to be rested.

Aria greeted me with a ‘hello mummy’ and a hug and a kiss!  Such a sweet girl.  She must feel like complete rubbish and we know she is in pain.  But she still manages to be a sweetie.  She has moments when she is really uncomfortable and doesn’t settle.  Then she is straight to sleep.  She is trying hard to keep going.  We are so pained to watch her suffer so.

I have taken some photos.  I just looked at them and am a bit nervous about posting them.  Aria looks pretty sick and yellow.  Which is the reality of her situation really.

Met the transplant surgeon who is on this weekend, I haven’t figured out their rotations yet.  She was nice and said that we are just waiting for organs now and said it could be ‘hours/days/weeks/months’  But then she said ‘well not months’  I didn’t ask whether she meant it shouldn’t take that long to get organs or Aria doesn’t have months.  We have learn’t not to ask questions when we don’t really want to hear the answers.

Asher and I are off to Walmart this afternoon.  A lovely nurse called Amanda is taking us.  It will be nice to get out of the hospital again and get some things that we need.

Aria needs organs, please pray they will come and soon.  God has brought us so far and we pray He will take us the whole way.

Aria

Aria in her PICU bed watching her DVD player- Barney is the new fave

Ashie Monster- who has been far from a monster, such a good boy.

View from the hallway where we catch the lift to go down to the hospital.

This is were we stop each time to look for bunny rabbits. Asher insists we stop to see if there are any there. We have seen them a couple of times but the snow has melted a fair bit now.