2010 July - Aria MacDonald

There is what six months of receipts look like.  Are you thinking- we would much rather see a photo of Aria.  I agree.  But I do have a point.

We have the privilege of having Aria’s fundraising money in a Trust account with the KIDS foundation.  The privilege of them having the responsibility of managing and receipting that account.  The privilege of telling people who donate money to Aria it is safe and well and they can have a receipt for tax purposes.  The KIDS foundation is a registered charity and once a year they have an independent audit of their accounts and as Aria’s trust fund naturally falls into that audit.  Hamish and I have the responsibility to keep receipts to account for all the fundraising money we use to have to privilege of being together here as a family in the US.  We have kept all the receipts but given the events of the past six months we have been less than great at organising them!  But here they are in month and date order- now for the fun job and ticking them off with the bank statement!  Thank you KIDS Foundation and thank you to all the lovely people and companies that have donated to Aria.

Now to Aria-

She failed to fly overnight off the vent.  She still needs that vent for at least 6-8 hours a night.  That is ok.  She is making progress every day.  The vent settings she is on are very minimal.  The vent is set at 21% O2 (normal room air) and CPAP pressure support.  So it kinda pushes air into her lungs as she takes a breath.  Naturally we are really disappointed but it is ok because her kidneys aren’t quite perfect enough to go home with anyway.  The Gastro Doc joked to us yesterday that Aria’s gut could of gone home weeks ago!  We laughed cause he is right-it was the intestine that rejected first up last transplant is doing awesome- not a hint of trouble.  Which is fine cause that is the make or break one and the reason we came to Omaha

Hamish and I are doing most of Aria’s cares now.  The PICU nurses have been very generous teachers which is lovely considering that isn’t really their job as such.  Teaching is mainly done on the ward.  Aria loves having mummy and daddy do her cares and she is an excellent helper.  I was teaching Hamish how to do her wound dressing yesterday and she was busy poking herself with a Q Tip- so funny.  She has a bit of thrush in her mouth so we have had to give her meds directly into her mouth so we encourage her that she is helping us.  It is a sales pitch that works too!  Honestly she is such a good girl and really embracing her life rather than fighting it (most of the time!)

Unfortunately I have let my guard down in regards to getting Aria home.  I let my mind start to dream and hope.  For almost 8 months now, since before we left NZ, we only plan life in 24 hour increments.  Sadly I am at the point where I get anxious if I have to plan ahead even a day or longer.  Simply because I can’t and it really hurts.  I wish we were normal and living at home as a family.  Asher cries now every time we leave the hospital.  He loves hanging out with Aria now she isn’t a blob in a bed, which she has been for so long.  Breaks my heart every time.  So I need to get back to ‘coping’ and ‘taking it one step at a time’ which I hate cause what choice do I have.  Hamish’s parent’s arrive on Thursday and for some reason knowing help is on the way makes the next 3 days seem like a lifetime!  It will be fab to have them here and the kids are really excited (as are we!)

I have some really fun pics of the kids to post tomorrow.

THANK YOU for reading Aria’s blog.  It is a privilege that you do and we don’t take it for granted.

Ummmm so it appears tonight Aria is going to go without the vent.  Or at least try her without the vent and she how she does.  Ok then.   I think she will do fine, she is still on 26% O2 so that makes me happy.  Today when we were in the room I hooked her up to the o2 and she is much more settled and the day was much more pleasant.

Really it is a bit scary because the vent is the only thing keeping us in the PICU.  Still we are really hoping discharge is a week away (pending a success night off the vent) and they might be compassionate and let us stay.  We have spent 7 long hard months there.  We know the staff and Aria is comfortable there.  Would be hard to unsettle her with a new environment on the ward and then another one at home.

One of our fave PICU nurses left today for another job in the hospital.  Interesting thing about Aria when she could talk (before 1st transplant) she would refer to certain people or things as My.  My daddy, My Nana, My Dolly and My Nurse.  Only those people would get a My infront of them.  If Hamish or I had to go to the toilet then she would say ‘get my nurse then’ and she would only refer to certain nurses as My Nurse.   Cute.  This particular nurse we will miss a lot.  She was there new years morning at 3am when Aria was on the vent (and I couldn’t sleep).  Fast forward to the day of Aria’s second transplant and she was there that morning too.  And all the tough days in-between those events that are now blurred.  We are SO thankful for that and all the other nurses that have done hard days with us!

So Aria might be home in a week.  Hamish’s bumped into one of the ICU docs in target today (Omaha is a small town).  He preached caution when Hamish’s mentioned Aria should be home in a week.  He is right, it might not be that straight forward.  Please pray Aria might get home, there is some fine tuning to do (and lots to organise!)  But God can do it!

Aria has lost TWO pieces of equipment today.  First the wound vac is going which is great- one less piece of equipment to carry around.  Sad though because we liked the wound nurse that visited three times a week.  She was nice and Aria would blow her kisses and Aria doesn’t dish out kisses to health professionals all that often!

And finally ARIA IS LOSING HER CENTRAL LINE TODAY!!!!!!!!!!!!!!!!!!!

She has had a central access since she was days old and now all her food and meds go thru her new bowel just fine she doesn’t need it!!!!!  completely awesome news

Hamish and I got in this morning and where met with listening and understanding ears from the team and a happier Aria.  Hamish did a great job advocating for Aria last night after I left, which makes me realise what a poor job I did.  And thankfully all that was relayed to the day shift.   Basically no clear answers really except the need to slow things down a bit.  There is still a difference of opinion I think and personally I would prefer her on a bit of O2 rather than regular room air but she is happier today so that is good.

The pee was down a tiny bit yesterday but her creatine and urea continue to trend down so that is great.

Kidneys- check.  Wound vac- check.  Vent- work in progress .  Walking- very much a work in progress.

Thanks for the support on the post yesterday.  I know it isn’t fun to read the downsides of our journey.  I should clarify in case others thought that the question from my midwife wasn’t ‘oh my gosh you aren’t crying are you?’  Rather one of ‘hey are you ok are you going to cry?’  Sorry- I realise when I write these emotional posts that I don’t think straight and probably don’t communicate super well!

Anyway progress continues to march on with Aria’s health.  Our nurse pointed out yesterday that perhaps this is weird for us as we spent so much time not making progress.  Solid point- this does feel rushed.  But this is God’s timing and we are overwhelmed at HIS goodness to us.

Aria was on normal room air today since 7am this morning.  I had been quite uncertain about this but the team reassured me that her O2 stats were perfectly fine at the late to mid 90s.

But today Aria just was not herself.

All day we spent walking around in her wheelchair.  This morning I learnt how to change her trach out so this meant I didn’t have to take a nurse with me.  I don’t get half these rules but just do what I am told.  Of course this means I have to drag an o2 tank, feed pump, bag of gear, stats monitor and wound vac all creatively screwed to an IV pole AND push Aria’s wheelchair whilst dodging people in a busy hospital.  Either than or have her complain at me all day.  I managed to eat my lunch at 2pm, finally, bites at a time.  “yes Aria one min and we will walk- just let mummy eat her lunch’

She didn’t smile the whole day, except when they did a breathing treatment in the arvo and she got a whiff of 100% oxygen.

Finally at 7pm I put her to bed except she wanted to sit bolt upright and wouldn’t lie down even though she was yawning.  And when she would slip down a little she would get upset and mouth Up!Up!  Then she would beg to go into her wheelchair again.

I KNEW she was struggling- I could see it and no mother should watch her child struggle for air.  I was just so upset and felt like no one was listening to me.  Again I continue to be thankful I share this journey with my husband because he brought Asher in and took over.

Something I remember very vividly was when Asher was a couple of days old my midwife did the heel prick to get blood to put on that card to test for all those diseases.  She said to me ‘Are you going to cry?’ I remember saying ‘Ummmm no of course not- why do you ask’  She said some mums cry when their babies heels are pricked.  Then it dawned on me- I WISH I WAS THAT MOTHER!  I wish I was the one that cried when her precious new baby got a little heel prick.  Instead I have watched my daughter been prodded and poked and suffer and I felt hardened.  Like perhaps I would of been the mum to cry but now I am changed.  I love my kids so passionately that I would do anything for them but slowly I feel I am having to turn myself numb just to cope with what I see Aria suffer thru.

Asher and I left tonight and Hamish said they put her back on the vent and her face instantly changed and she lay down and went straight to sleep.  The team and us are pushing Aria hard to work her lungs- but at what cost?  She still deserves a life of smiles and play.