2009 December - Aria MacDonald

Aria is officially on the transplant list, waiting for four organs Small bowel, liver, kidneys and pancreas

This is massive news and we are hugely excited and nervous and well, lots of things really.

She is at the very top of the list and has been transferred to PICU.  Not because she is really sick but because she needed a blood transfusion and if she in in PICU this will put her at the top of the list.  The team seem to think there is a very high chance Aria will get organs this weekend!! Of course they have no real idea because only God knows when life will begin and end but we take their advice.

Two things remain in the back of my mind, only to be fully embraced once we actually get organs.  Firstly the fact that somewhere out there a family is going to lose their baby and make a brave and difficult decision to donate life.  I find this hard and my prayers go out to them already.  Secondly the major huge operation we are about to put Aria thru and all the risk and complications.  But we have no choice.

There has been no real surprises being here except that they have put Aria’s TPN over 20  hours and she isn’t really getting anytime off.  They are concerned about her blood sugar.  We are just like ‘fine whatever’ If they told us to shave our heads and hang upside down from the ceiling we probably would!  But also they told her today that Aria will lose her g-tube at transplant and instead will get an NG tube in her nose.  This is a bummer because she will have this until she is taking all her calories orally which may be awhile.   Still anything is better than TPN!!!

We also have been only the 2nd family to ever ask what happens to our child’s original organs.  Apparently in the US they are just put in the medical waste and burnt.  We believe Aria’ s body is a gift from God so it doesn’t sit right just to biff her old organs in the rubbish.  So we asked them to be returned to us for closure and a chance to say goodbye to this part of our journey and thank God we have the chance to do so.  Thankfully the team has been really supportive of our unusual request and found a funeral director who will kindly cremate her organs at no charge.

Anyway there is always a ton more to say but I need to get some tea and Asher to bed.  Hopefully Hamish will be sleeping in the hotel room tonight as Aria has one on one nursing in PICU and they will call us as soon as she wakes up.

Things here are hectic.  Needless to say the shine has come off and we certainly don’t enjoy living our lives at such a frantic pace.  Just managed to eat today only twice though!

More importantly it is Asher’s birthday!!  So glad he has no idea because he would be feeling fairly ripped off.  But we did manage a cake care of the play team and decorations and presents.  He was pretty happy.  He is such a good little boy and doing really well.

Aria is pretty grumpy and I am dreading the night shift.  She is just so unwell and it is really difficult to deal with.  There are just meltdowns and nothing we can really do but stand there and watch it.  And of course they always come when Hamish and I are busy with people.  The psychologist came today and of course I was alone with both kids and Aria was having a meltdown.  Couldn’t of been worst timing, talk about pressure to perform.

We had a final meeting with the transplant co-ordinator.  It was not pleasant but nothing we hadn’t heard before.  They are wanting to get her on the list tomorrow, that is a big deal.  Who know when organs will come but for some reason I hope not to soon because we need some normal.  That is crazy to say because we are desperate for organs and quickly.

The film crew have finished now which is a big relief.  It has been more difficult that I thought it would be mainly because it has mostly been me filming and talking.  And it has added another complicating factor to an already difficult situation.

Anyway being that there has been no time to eat here has been no time to communicate either.  There has been high level negotiation with Aria for a moment to type this blog.  We desperately want to touch base with our new Omaha friends but it hasn’t happened!  Sorry everyone!  Have got lots of nice messages and emails but barely had time to fully read them all let alone reply!  Sorry everyone!!

Anyway hopefully the next blog will contain news she has been listed!  Great stuff.

Another busy day for us in Omaha.

The surgeon came to see Aria and us this morning.  He said if he had organs downstairs he would transplant her today.  Of course he doesn’t and she still needs to be listed but everyone seems in a hurry to get her on the list and high up it.

We had a meeting with a Transplant Co-ordinator today at 1pm, we got about half way thru and Aria lost the plot so we will have to finish it tomorrow.  What we did hear was informative about transplant and how things will work.

We talked more about pain management with the GI doc today too and he ordered a CT scan for 8am tomorrow.  Aria is still having belly pain and they are talking about getting her a pain patch to manage it.  Good news tonight is that she is very happy and perky and chatty!!  Such a relief after the complete meltdown this morning.

Asher and I managed to get to Target this arvo.  The film crew took us and filmed me and Ash wandering around.  They have been filming us most of the time which has been fine, nice to have them around.  Back to Target: we were there for 3 hours!!!  I managed to buy us two cellphones so they are just charging now.  Brought Asher a b’day present as it is his birthday tomorrow.  Got a Thomas train set which is really cool.

Overall it was pretty overwhelming, particulary trying to buy groceries and food for Asher.  Most of it is pretty weird. 

We are still catching up on sleep.  Asher hasn’t been himself much and I am feeling pretty tired. 

Anyway thanks for all the comments, it is lovely to hear from home.  Miss you all.  Will post some photos tomorrow.

It is the end of our first day here.  Everything is going to plan and we are SO HAPPY to be here finally.

There is so much to say so I will try and be brief.

The trip- long and long and long.  The last flight was hairy in terms of both kids losing the plot and super tired and Hamish and I at the end of our patience.  But we made it and finally found were each of us were to rest our heads.  We had excellent assistance at San Fran which was the big concern.  They found all our baggage (which is HEAPS) and loaded it and rechecked it for us, awesome.

Everyone is here super lovely.  The highlight of the day was the transplant co-ordinators saying they were here to ‘wrap our arms around us as a family and guide us thru’  WOW!!  Lots of people are going out of their way for us.  Family- we have been promised some free calling cards so will try and call soon.  No cellphone access yet.

Weather- SNOWING!!  Very bad snow.  We haven’t been able to get out because everything is closed.  Hence the no cellphones which was top on our list.  I got outside for a bit, felt like a real tourist and all the people in the office blocks were watching me !! 

The hospital- A.M.A.Z.I.N.G!!!!  We are stunned at out well equiped this place is and how lovely the rooms are.  Huge will two TVs.  Aria’s bed adjusts itself automatically with her movement.  There a separate private bathroom/shower which patient and parents can use.  When you buzz the nurse she speaks to you thru an intercom at the bedside from her phone attached to her hip.  You then say what you need and someone comes.   I haven’t seen a piece of paper since I got here, the nurses have individual computers they wheel around on trolleys to enter Obs etc.   Yummy cafe with lots to chose from included junk food and cakes etc.  Reasonable portions of course.  But in general healthy nice food.  Oh and free wireless internet in our room!

Hamish- is very very tired.  He came straight to the hospital with Aria and they started the assessment straight away!! 

Asher- also tired but he is coping very well.  Not eating much but still pretty happy.

ARIA THE STAR OF THE SHOW- She has had a very busy day.  They are full on into the assessment and are doing everything quickly.  She is actually doing very well and chatty and happy.  Her health seems a bit better but still lots of pain.  She is wanting lots of walks which is fine.  Very tired, hasn’t slept for ages but finally asleep now.

THE PLAN- the assessment will be finished by Friday and everyone said it is a no-brainer but she should be listed by next wednesday!!!  The surgeon reckons she should get organs very quickly given her health and their waiting list.

Praise GOD IN THE HIGHEST!!  We have gone thru such pain and while there is still more to come it is so very very good to be here.

If you are still reading- a couple of people asked for our address

MacDonald/Room Number 7724

Lied Transplant Center

987600 Nebraska Medical Center

Omaha NE 68198-7600

We are here!!!!!

Asher and I spent the night at the hospital accom and hamish and aria are at hospital. No idea where I have to find them. Praying Ham got some sleep.

The last flight was pretty hairy and we were SO tired. Thankfully some very dear new friends Randy and Elaine picked us up and didn’t leave us until 2 am !!! They us showed us at the airport thankfully because I thought we were sorted by when our flight changed we were stuck. Praise God.

It is snowing in Omaha !!! worst snow in 5 years apparently. God knew when we needed to leave cause another day would of seen us stuck.

We are so tired. But God is great and SO SO went before us. Lots to tell when I get to a computer and not typing with one finger on my iPod.

It is very flash !!!!

We made it thru check in and customs and waiting to board.

Lots of tears with saying goodbye to family and starship staff particulary Dr E. Thank you for believing in our dream for our girl. Will miss family and friends so much

Will update at san Fran or denver

Bye NZ!!!!

We had Aria home today for her thanksgiving/farewell service today.

We had a great time, praising our God for how he has done so much for us and also seeing many of the people who have supported us and helped us over the last three and a half years. Thanks to all those who turned out.

Aria had a bit of a rough day today with quite a few nose bleeds and some bleeding from other scratches and pokes. The blood thinners she was put on to prevent further clotting seem to have been a bit TOO effective and caused a bit of drama. They are giving her some platelets tonight to try and solidify things up for the trip.

Still looking ok for a departure tomorrow, we have a SERIOUS amount of luggage to take with us, I’m a bit shocked.

Anyway this might be the last post before we head to the wintery north so please pray for a safe, restful trip, a compassionate visa person, Aria’s health and for provision at the other end.

Thanks again to you all and God Bless.

Anita and I are at home again tonight, might be the last time for a long, long time….

Anyway we are hearing reports from Nana and Auntie Megan that Aria is chatting and laughing and showing a bit of the personality that we know and love.

This is pretty exciting because we haven’t seen too much of the ‘old’ Aria lately, really hoping this is a turn for the better in her.

Also adding to the hope is an increase in the outputs from her tummy in the last 24hours which is normally a good sign, and we can actually detect ankles now….. the strange things that excite us.

Just thought I would update you all and ask that the prayers keep coming for Aria’s health.

Don’t forget the thanksgiving service/farewell tomorrow at Covenant, we’d love to see you all.

Wow So creative with the post titles these days.

Did you know what happened last night?  We had our last ever meal dropped off by Judith, a lady in our churches.  Roast chicken, yummy yummy.  I haven’t cooked for months.  Lucky Hamish ha ha.  Seriously though for over 3 months now we have had meals dropped to us on Mondays, Wednesdays and Fridays.   Most are huge and so Tuesday and Thursday would be leftovers.

You would never believe the stuff we got roast beef, lasanga, curries, mac n cheese, home made pizza, pasta bakes and so much more I can’t remember.  Also cakes, puddings, ice cream, biscuits and so much more I can’t remember.  All beautiful homemade cooking.

Thanks so much to Joanne for organising it all.  Thanks to Rita, Noa, Corina, Anna, Cathie, Nitika, Sue, Mrs Warner, Mireille, Helma, Lynne, Maria, Shona, Mrs Kennedy, Barbara, Mrs Willis, Jacqui, Rosemary, Mrs Chaung, Delwyn, Adele, Michelle, Deb.  I think that is everyone, sorry if I forgot you!!

Aria is in a lot of pain this morning and she is crying that her back hurts.  This is bad news.  Plus she is really tired.  I hope things improve for her, it is hard to see her struggle. 

No go for the KIDS foundation party today.  The Docs don’t want her out with the masses unless she is going to wear a mask.  And there is no way she is going to do that, plus she is too tired.  And I can’t face going without them.

We still have to pack and I am starting to get a bit anxious about it but we will get into it today.  The medical stuff is packed so everything else is just clothes and stuff.

We are having a going away Thankgiving service and Afternoon Tea on Sunday afternoon

Covenant Presbyterian Church 77 Rogers Road Manurewa  2.30 – 4.30pm

Sorry to those I haven’t invited personally, I wish I had the time for personal invitations.  Please come and say goodbye, we would love to see you!!!

Aria did well yesterday again and the Gastro Reg hit the vein first time!  We were all so relieved.  Aria said Ouchie!  But she was super brave and when it was over was saying Finished!  Team Work! (it took her, me, the Doc and the nurse). 

Hamish and I did something we had never done before and let the hospital do TPN!  I know, shock and horror.  Well not really.  We have to be in at hospital for rounds at 9.30 and if we had waited to set up TPN one of us wouldn’t have got home until 7pm.  So after three and a half years at Starship and letting the nurses handle her line all the time we decided that there was nothing to worry about and they had more than proven themselves.  So after clearing it with the charge nurse and our nurse that they were all fine and going to do full sterile technique I left Aria with Nana.

Aria waved goodbye and I left at 2pm and I went and got a haircut!!!  And so did Asher, he looks so grown up!!  We had a nice night at home and a nice sleep.  Ham is still asleep which is unlike him 🙂

We are so excited now!  Still a list of things to do, um like packing and stuff!!  Ha ha so nothing major.  Planning to get the the KIDS foundation christmas party at Rainbows End if Aria is up to it and allowed out on Saturday.

Can’t believe it is finally here, we are leaving on monday!  MONDAY !!!  Oooo I have butterflies in my tummy just typing that!  According to Google weather it is -3 degrees in Omaha, that is COLD!! 🙂