2009 September - Aria MacDonald

Hamish and Aria left at about 3pm this afternoon.  I was feeling pretty awful and the look on Hamish’s face when he left said it all.  Poor Hamish, it was his turn to do the trip to ED and thankfully their wait wasn’t too long.  We have a room on 25B which in the General Medical ward.  Kinda bummed we lost our room on 26B because the telly doesn’t work and we much prefer 26B where we know everyone.

Aria is on a different ABX which is 12 hourly and apparently they had to get permission to use it via IV.  It is suppose to be less toxic and better than Gent.  We just hope it works.  12hourly is good because at least that way we can go home on leave maybe during the day.

Anyway, back to feeling stink…..  I checked Aria’s email this afternoon after they left and their was an email from a lawyer saying their client wanted to make a donation to Aria’s Appeal.  Turns our Aria’s Trust won THIS competition that my friend Sarah had organised with the help of my church friends.  Thanks Sarah and everyone who helped!! 

It was a welcomed bright spot in the midst of a dark day.  Isn’t God good at shining a light in the darkness?

Oops- Jessica- in answer to your question.  We are hoping to leave for Omaha Nebraska this year, just waiting for funding and negotiations to be completed, hopefully any day now!!

Yesterday morning I was sure that we were on top of whatever is troubling Aria.  However since yesterday arvo she has continued to spike temps and this morning woke up in a foul mood.  Her colour is also really pale and strange.

So we rang Starship and told them and they have asked us to re-present at ED.  Sucky.  This time we will be there for up to 2 weeks.  Previously they were trying one dose at a time of Gent to see if that did the trick.  It helped but it didn’t kick it.   If Aria has a perfect temp for a period of time we might be able to finish the course of ABX at home, but at the moment we aren’t leaving until this is fully sorted.

This.really.really.sucks 🙁

Aria and I went back to Starship this morning, reporting at 9am as requested.  Despite only going home on night leave and a promise we would keep our room, we arrived at room 9 on 26B and saw that there were new occupants.  I had a funny feeling that would happen.  So we floated around for a bit between having a finger prick, waiting for the results and having the ABX.

It was actually a very busy morning with lots of visiting and visitors.  We chatted with Sam’s mum Shirley for awhile and then popped down to see Sam and Lara who are unfortunately in too.  Back up to the playroom and had a meeting with Tracey from KIDS to chat about respite funding.  Then Katherine, who used to help me a lot with Aria when Asher was born, came to visit as she was up from Gisborne and was over in Auckland Hospital having a study day.  Phew!  I was really thankful cause it made the 5 hours with no room to sit in bareable.

This morning I felt sure that we were on top of Aria’s temp and the final dose of Gent would finally knock it on the head.  However when we were in today it started to creep up to the high 37s.  So whether Aria is home for good or back in the next couple of days we are not sure. 

In some ways it is really difficult to come home.  There is alway a pile of washing and neglected housework to catch up on and a fridge full on suspect food items.  Lots to do and very very little energy.

Got an email updating us on Aria’s funding today and sounds like there has been progress made in data gathering for the ‘negotiations’  What there is to negotiate I am not sure but at least things are progressing.  The business manager assured me she understood our position is difficult and offered to meet me any time to discuss.  This was great to hear.

Thanks for your support, comments, texts, meals, emails, facebooks etc etc.  Thank you for your prayers !!

Tonight our family will be under the same roof for the first time in a week!  Aria is home on night leave but back in tomorrow morning.

She is better and today she finally had her iron infusion.  They had been putting that off because bugs love iron and we want to make sure they were all gone before we sent in a potential feast!  But Aria probably needs another blast of Gent so that will happening tomorrow depending on her levels.

She still hasn’t had her jabs and those won’t happen until next week.  Asher however had his chickenpox jab today and was a complete legend.  A student nurse was really keen to do it and we said sure.  We don’t let student nurses handle Aria’s line but we like to support their education so give them all the other jobs we can.  So she did it while Asher listened to the Wiggles on the iPod.  Honestly, he didn’t make a single sound but only flinched a little when the needle went it.  What a tough dude, I knew he would be fine cause even when he has had 4 jabs at once he barely cried.

So maybe tomorrow might be discharge day.  Maybe!  Hopefully!

Aria is still admitted at Starship.  She had another dose of Gent today and we are hoping that it is the one to finally knock all the bugs on the head. 

We still have to give her an iron infusion (which takes 8 hours!)  Plus some jabs that were scheduled for weeks ago for her and Asher.  No maybe maybe maybe we might get home tomorrow if she wakes with a perfect temp.  But that would make this admission a week long!  Crazy, that is longer than the swine flu one!!! 

Just got a text from Hamish saying we are being moved to another ward and that normally means you are off the radar a touch 🙁

Now I really hope we get home tomorrow!!!

Aria seems to be improved this morning.  Normally her temp would spike at 7am at around 38.2 but this morning it was around 37.5.  Her bili number has improved slightly too to around 93, which is still high but a bit better. 

We think she needs another dose of Gentamicin but her levels were too high 24 hours after her last dose so she is being woken at 11pm tonight for a finger prick to get another level 🙁

Hamish and I are planning and re-thinking our current situation.  Today was really difficult.  Our lovely friends the Bakers, picked Asher up this morning to take him to Kerriannes, our lovely carers house.  As soon as he saw his carseat going into the car he cried and cried, big tears.  Those who know Asher know how easy going and relaxed he is.  This was very strange behaviour.  Hamish rang me later to say he was going to take tomorrow off so I could spend time with him.  He really misses his mum and dad and his sister and it is heartbreaking because there is no way to explain it to him.

This admission will be the 5th this year.  The sacrifice that we make to keep Aria healthy is totally worth it, in fact 10 admissions would be worth it.  But it is still a sacrifice and a toll on our little family, in fact our wider family and friends too.  I had to cancel at least 2 commitments and we just made Tre’s 1st birthday.  Thankfully, bar the odd exception, people are hugely understanding and supportive and realise our focus is fully on Aria and maintaining our family and marriage during very adverse conditions.

Overall we are all very weary.  Hamish and I have an appointment next Wednesday with WINZ so we are hoping for a positive experience.  I had a nice chat with them on the phone so we are hopeful. 

We are so grateful for so much things and I am reminded of this verse

Isaiah 40:31 (New International Version)

We have that exact same hope in the Lord, a promise that He will be our energy to sustain us when we feel we are at the end of ourselves.  Isn’t that great?

Today is Fathers Day.  We managed to escape with Aria for the day after seeing Dr E and have a blast of Gentamicin.  Gent isn’t the preferred choice for treating Aria because it isn’t very kidney friendly.

Our church family met this afternoon for a prayer meeting.  It was a really blessed time.  Lots of tears and really uplifting prayers.  Basically we shared our struggles and gave thanks for how far Aria has come.  It was nice to be honest with what we are going thru and how things are difficult and we really want to be in Omaha.  We split into groups and talked with God and we really felt God’s presence.

Interestingly Aria, Asher and Tre were in our prayer group.   Aria and Tre were playing together and Aria was showing him her NuNu and then decided with Tre being one now it was time for him to start learning his colours.  “Green” “Green” Aria said as she point to her NuNu Juice looking at Tre.  I thought to myself that yes indeed it was green and it hasn’t been green for a long time.  Green is good because it means bile flow and because it was clear too which is also good.

Also Happy Father’s Day Hamish.  I feel particulary blessed to have Hamish as my partner in this strange, painful, crazy and joyful journey.  Hamish is an excellent father and put 110% into his kids and our life together.

Hopefully tomorrow might bring no temps and a trip home to stay.

Aria’s temperature continues to murmur away, they are thinking of changing the antibiotics to see if it makes a difference. It’s a little hard to manage an illness when you don’t know what is causing it.

Dr E. suggested that best fix for Aria is some replacement parts, and that she is working hard on that front. Also on that front we have our special prayer meeting to pray about funding etc this afternoon at 3pm @ 30 Hilltop Drive. Feel free to come along.

Yesterday Aria got a leave pass to go along to her cousin Tre’s 1st birthday party. They had a mobile farmyard there with all sorts of animals, Aria was very excited about going to the party.

I think her favourite was when a little kid (of the baby goat variety) came up to her while she was ‘eating’ her party food. She thought it was very funny. The other highlight of the afternoon was the time she and Asher spent with one of their other cousins, Venisio. The three of them spent some time together talking about their favourite things and Aria was very amused when Asher was copying Venisio as he showed all the clever, crazy, adventerous things little boys like to do.

It’s great to see the bond the kids have developed with their cousins, they seem to have developed a good bond. Another example is a nice little moment when Tivoli, Aria’s oldest cousin was protective of Aria when another girl was making a big deal about Aria’s special additions. Leaving the extended family is probably going to be the hardest and saddest part of going to transplant. Hopefully with the wonders of the internet we can keep in touch and keep the familial ties strong.

This the word that my text messages to Hamish had started with this morning.  Things with Aria’s temp were looking good yesterday and last night.  We had nearly qualified for the magic 24 hours with no temp until this morning at 7am and it went back up to 38 and seems to have setttled there 🙁

So that is a real shame and means the ABX probably haven’t done their thing when it was looking like they had.

We are still hoping to get to Tre’s birthday today, hopefully it is still possible although Aria isn’t in a party mood.

Tomorrow if you live in Auckland and have a spare half hour we have having a prayer meeting at the Bracefield’s house at 3pm 30 Hilltop Drive.  To bring some things before God in a corporate setting.  Would love for you to join us.

Finally Aria’s iron or haemoglobin is 103 after her blood transfusion!  This is great news because after her tranfusion three weeks ago it only jumped to 78.

Bad news though that she still has a little temp and she can’t go home until she has 24hours with no temp.  Considering there is no idea or other symptoms as to what is causing we wonder how it is going to be treated and fixed.  She is on antibiotics but who knows if she is on the right one because we don’t know what bugs we are treating.  BUT Dr E did give her leave so we can go to Aria’s cousin’s Tre 1st birthday party on Saturday arvo.

We were hoping she would perk up after the transfusion but she hasn’t really.  She is more chatty and her colour is better.  But not walking or very happy about life.

I got a text last night to tell me Aria’s article was the top viewed on stuff.co.nz.  That was nice.

Things are pretty average for us right now.  Aria is sick and has been for many weeks now.  She hasn’t fully recovered from Swine Flu or at least it really knocked her.  Hopefully this will be the beginning of her feeling better and getting back to full strength.

Thanks for your support, we really appreciate your comments and prayers.