2009 November - Aria MacDonald

We had an excellent appointment at the US embassy this morning.  It was long though, lots of waiting.  But we were issued a ten year mutliple entry visa.  We still have to plead our case at immigration when we get there and show them our documents.  However the guy at the Embassy wrote this brillant note on our account stating our case and asking them to issue us a two year entry.  Honestly,  I couldn’t have written the note better myself.

And the end of the conservation the guy said ‘Best wishes with your little angel, she is going to the best place and our love and prayers go with her’  Hamish and I were so struck by his kindness to us and he was really understanding.

So we feel really encouraged.

Aria is still not wonderful.  Still has puffy feet and her weight is up to 16kgs, 1.5kgs more than last week.  Bummer, still in lots of pain.  But the docs wrote in the notes this morning ‘ok to travel’ so we will keep going.  We just really want her to be in Omaha.

Hamish and I are battling lots of emotions and pressure.  I have a To Do list that is huge and I feel my mind going 1000 miles an hour.  It is like this laser beam of focus and everything non essential is out the window.  Have been going flat stick since early morning yesterday getting the house ready for people to view.  Spend and hour and a half in traffic and a long appointment and got home and the mobile and phone keep ringing and there a lots of emails to send.  Was hoping to get a sit down and a hair cut but I don’t think that is going to happen!!

Anyway- things are busy.  And we know here are only days to spend with family and friend.  Hopefully towards the end of the week all the stuff will be done and we can relax.  Ummmmm wishful thinking maybe.

Aria is not very well today. Double doses of morphine over night and lots of pain. She did manage about 5 hours solid sleep though so that was good.

She is fairly unwell and can’t get on a plane in this condition. Please keep up your prayers. Funding might be thru but she needs to be well enough to travel.

No Santa parade today. Hamish and Ash are still going with Nana and Tiv. It would be a shame to waste the opportunity.

We are still pushing on with leaving on the 7th. Hamish and I have an early appointment at the US embassy tomorrow morning. Praying they might be sympathic to our cause.

Praise the Lord!!!!! He is good and we praise His name!!!!

IT IS A YES !!!!!!!!

Happy tears are flowing !!!!!!

Ok so we have come down off the ceiling!  We are so happy and thankful.

We were in the family rooms at Starship when my phone rang and I could see it was the business manager at Starship.  She said “I have good news- It is a yes- where are you?”  I hung up and burst into tears, big relieved sobs and Hamish and I just hugged for a bit crying at this amazing news. 

Yesterday Starship were starting to make noises about perhaps the MoH were taking so long because it was a NO.  The business manager had just come out of a meeting with her boss in which they were discussing a no answer and the ‘fall out’ from that and then the MoH phoned her.  So Hamish and I had to really wrestle with our faith and look to God and keep our eyes fixed on Him should He say no.

BUT HE DIDN’T!!

Thank you so much for your beautiful comments- we love to read them and know you are all so happy for us.

I FORGOT!!!!  I forgot to tell you the other big news of the day- Aria bili is down to 250!!!

Unfortunately Aria’s health has down a backward peddle overnight 🙁

She had 2 doses of IV panadol and 2 doses of morphine and that just managed to keep her pain at bay.  She was waking pretty much on the hour and yelling.  It was a really awful night for her and I (and probably our neighbours at Starship sorry!)

Today she is having a blood transfusion.  And in big-ish news the Docs are dropping this lipids in her TPN a couple of nights a week in a bid to save her liver.  That is the ‘fat’ in her TPN.  But because she isn’t doing much except lying and sitting she can afford the drop in calories.

Tonight Nana is going to stay the night with Aria.  At least I think that is still the plan.  We really need to give Asher some Mum and Dad time but it is hard to leave Aria when she is in pain.  Hopefully the morphine will help better tonight.

Today we are waiting for the big decision.  I feel remarkably calm and at peace although shockingly tired with a big headache from lack of sleep last night!  This is exactly how I felt when Aria was in surgery at 13 days old and we were waiting for hours to know whether her intestine would ever work or not.  It was the worst possible outcome and we were told she would die.  BUT my feeling of peace was not incorrect- everything was fine in the end.

So hopefully tonight we will have news- good news.   Please keep us in your prayers.  And more importantly please pray for Aria’s health.

Not really too much to report today on Aria’s health front.

As reported yesterday a lot of possible issues have been eliminated, so we may be back to the theory of non-functioning gut nastiness.

It’ll take a while for the antibiotics to get on top of the gut bugs however if that is the problem, but we’re hoping each day that Aria will come right.

In other news, word came from the ministry that there might be a decision by late tomorrow afternoon. There is no guarantee it will be the answer we’re hoping for but with God there are no wrong answers, just answers we may not understand. Please pray for this decision and for Anita and I as we prepare ourselves for it.

One other lovely piece of news we got is that the mobile network 2 Degrees has offered Aria a place in their grandstand for the Auckland Santa parade for this Saturday. It will be great if Aria is up to it, I’m sure Aria and Asher would love it. Thanks heaps, 2 Degrees!

Just a quick update to say that there is no infection in Arias knee and neither is it a break. Three words come to mind wild and goose and chase.

But it is good news because an infection in the bone would mean 6-8 weeks of ABX and she couldn’t of been put on the transplant list until the course completed.

Hamish and I had a really nice time out. Considering the stress we are under I was almost surprised. But God is good and blessed our time.

Anyway thanks for checking in on us.

Aria got a Orthopeadics consult at 3am this morning.  Well actually they showed up to examine her and Hamish advised them to come back in the morning or something perhaps a bit less polite.  Seriously who examines a 3 year old in the middle of the night, it isn’t like her leg was about to drop off!?

I was also feeling the hospital love at the bone scan yesterday.  There should be a rule about doctors not handing central lines.  I held my breath and prayed nothing nasty would jump into her line at the same time kicking myself that I hadn’t drawn up a flush and hep lock myself.  

Anyway enough moaning.  Hopefully Ortho will be back at a more reasonable hour this morning!  We are very keen to see them of course because it is likely they hold the answer to Aria’s knee.  We are nervous it is a break and we will be left with no answers to what is troubling Aria AND broken knees.  Do knees break?  I don’t know.

Hamish and I have been married 9 years today!  Never did I think 9 years ago this is how we would be spending our 9th wedding anni.  Me at home with Ash and Hamish in hospital with Aria.   Still we are planning to go out to dinner tonight.  Planning on eating a dirty great big steak as per Jodee’s advice to enjoy our steak in NZ because the US steak just isn’t the same.

Hopefully today holds answers.  Wouldn’t it be good if we got THE ANSWER and Hamish and I could celebrate with some bubbles at dinner tonight.  Unlikely but dreams are free.

I really should learn by now to expect the unexpected.

The team sent Aria for a bone scan this morning to see if there are bugs that have attached themselves to her bones.  Of course since she hasn’t had a line infection for over a year we weren’t expecting anything but still had to look anyway.

And what do you know.  They found a ‘suspicious’ area in her left knee and something similar in her right.  Of course we have zero answers until Orthopeadics get on the case (and those guys take ages in my experience).  Anyway needless to say today brings back bad memories which are best forgotten but it is hard.

Aria will need an xray to check it isn’t a break (yuck see above) then then a big needle to suck out the bugs if it isn’t a break.  Once we know what bug it is then maybe we can treat it.  And I think they might have to check her heart valves as well to check they aren’t having a party there (that would be bad)

We are hopeful that maybe finally the source of her temps might be found.  Or it could be nothing and just a funny spot on the scan.

No news about funding, things have gone quiet on that front although we do know the MoH are working on it.   There must be answer on Monday at the very latest.  We are planning to leave on the 7th possibly.  But who knows- expect the unexpected.  We are in your hands God!

Aria is back in hospital again. Home based pain/fever relief wasn’t really doing the trick so we decided to go back in.

I think we are almost at the point where Aria may need to be in hospital fulltime to manage those needs. It’s a hard thing to think about but is a reality we need to face.

To add insult to injury Asher is a bit under the weather too meaning no day care for him today, hopefully it is just a 24hr thing and he is good to go tomorrow.

As for Aria she is getting another different anitbiotic today which would be the 6th one they’ve tried recently to get the temperatures under control.

So far Anita’s ED stay is going ok, hopefully a room will become available really soon and they can settle in.

Please pray for an answer to the question of what is ailing Aria, and for continued/renewed strength for the rest of us.

UPDATE: The day was fairly decent as far as ED admissions go, (if anyone wants to do there 10000 steps a day, just offer to look after Aria in hospital for a day.) Anywho, they have a room now back on our usual ward. Here’s praying to a good nights sleep.

Aria had a good day today.  We went to the zoo this morning and Aria said lots of WOWs when looking at the monkeys and zebras.

Today we took her to toyworld and she asked to get out of the pram.  Ok, we got her out, thinking she might manage 2 or 3 steps.  BUT she walked around and around the Thomas railway over and over taking the carriage for a ride.  We were so excited because she hasn’t walked that much for weeks.  Then we got home she was really happy and asked to put on her shoes and sat outside waiting for Ashie Boomie to get home from the beach.

Anyway we are holding on to anything that might be progress and walking is always a good sign Aria is on the improve.

Hamish and I are currently at Ham’s parents house.  We have done a house swap.  Hamish is going back at 10pm and 8am for ABX but we are hoping to get a good night sleep.  Bob and Christine are managing the kids.  We are so grateful because Ham and I are really struggling and grumpy.  This life is really difficult for lots of reasons and it is nice to escape the choas of our house and feast on yummy indian food and just be Hamish and Anita not mum dad and nurse.