2009 October - Aria MacDonald

We all headed home last night and we all had a great nights sleep.

This was great for Aria because she has been pretty unsettled at night and her sleeping thru means she is improving.  And great for us because we don’t have to get up to settle her. 

Aria’s liver biopsy is this afternoon so we are going back in and her and Ham are staying the night.  The results won’t be due for a couple of days but we are hoping they will let her out tomorrow.

I am feeling a bit guilty about my moan about Starship yesterday.  Sometimes that place does my head in, the great hospital giant concerned with bed spaces and function.  BUT the reality is it is packed to the rafters of wonderful kind staff who really care about what they are doing for kiwi kids.  This I personally know to be true.

I have gotten one beautiful email and one beautiful letter from two different Starship staff members.  Yes- a letter- with an envelope and everything, which Aria quickly used to hold her crackers so her brother wouldn’t steal them.  Both of them have know us for a long time, the letter writer since Aria was one day old!  Needless to say Hamish and I were both teary reading both and so thankful for the rays of sunshine in our day.

Please pray for Aria today as she has her GA and procedure, please pray for the results.  That her liver isn’t so desperately scarred that……..well that we can get to Omaha and get organs in a timely fashion.

Ok so sometimes it feels like surviving Starship is this complex game in which you must bring your best strategy and wit in order to win.

For the first time ever in our adventures at Starship we find ourselves sharing a room.  Not cool at all.  The hospital is full to the brim and unfortunately not even our ‘but Aria has a central line’ card can be played.

So we had the idea of coming home for the night tonight.  It makes zero sense for Hamish to sleep on the yucky hospital floor when they both could be home in their own bed and we can all get a decent nights sleep.  There is a liver biopsy hopefully planned for tomorrow so we could go back early in time.  BUT – the risk is- if you aren’t physically in the bed they could give it away during the night.   Yup they pack up your stuff and that’s it.  So we would have no space to even rest tomorrow if that happens we could find ourselves wandering the corridors with the rest of the bugs.

I find myself less and less able to cope with hospital admissions.  Isn’t that strange?  You would think with Hamish not working and us having been doing this for over 3 years we would be sorted.   But these days we don’t seem to be discharged with Aria ‘fixed’ like what used to happen.  There are less and less answers and increasingly we are being told ‘she needs replacement parts’

I find myself wishing that Hamish and I weren’t such good friends and that we didn’t miss each other. Isn’t that strange?  Trying to keep a marriage working with a huge amount of stress baring down on you both and almost zero time together, well it is hard.  You can’t have a private conservation in hospital or a bit of a cry together because someone will always come in or walk past or something.

The point of this post is to be honest, maybe too honest? 

Last night I listened to this amazing and honest sermon about Christ’s suffering on the cross.  How Jesus suffered terribly because he was murdered in a truly horrible way.  But he was perfect.  And during his huge physical and mental sufferering he still loved, forgave, prayed and found someone to take care of his mum.

My suffering isn’t even .1% of his and Jesus suffered for me so that I might be might be able to share in his perfection through his death and resurrection.   So what is that I should do with my pain and struggle?  Well at the very least I should endeavour to make the best of it and not waste it.  God promises to make us more like Him thru suffering and I have witnessed this, but more and more I feel like I am paying a high price for it, a price I struggle to cope with.  I keep reminding myself, that this journey with Aria is a precious experience and I need to get all that God would have me learn from it, and by God’s strength I am hopeful that will happen.

Anyway thanks for your prayers and support.  We covet them deeply.

Aria got her ultrasound this afternoon.

We waited a long time and we had every indication that it wasn’t going to happen today when we got the call at 3pm that we had a slot. The scan went pretty well, Aria was interested in what was going on and interacted nicely with the sonographers in between watching Mr Bump on DVD and counting how many accidents he had (we got up to 7).

We were quite bothered by the results of this from what the sonographer said, the bile duct obstructions we believed would of been causing the increased liver numbers weren’t there, and there was no sludge to be seen either. The liver is big too. We were worried that this meant her liver is in worse shape than we expected.

We were told that the report would be sent through on their hospital computer system, an hour later they weren’t. We were bugging our very patient Dr’s for some answers to our worries, and they couldn’t because they didn’t have the report. One of the Drs said he would check before he left and thankfully he did and the report had finally turned up. He assures us that the ultrasound has nothing we should be immediately worried about.

Still while the nothing to worry about from the scan is nice, there is still the fact her liver is really playing up and she is still having grumbly temperatures.  Please pray some answers are forthcoming or things get better, preferably both.

At this stage there is a sense that we are just buying time so we can get her to the states for transplant…. a hard reality when that isn’t yet assured….

Still we wait on the Lord, with faith, because we know he gave all he had for us.

Aria’s temp was perfect overnight and she was pretty perky and happy this morning.  It seemed like the right thing to do to ask to go home on leave between AB doses.  The consultant gave the green light so Hamish and Asher picked us up.

We had a nice day at home.  Asher went to spend some time with Aunty Megan and Uncle Bruce and the cuzzies.  And Aria had a big sleep so Hamish and I got to de-brief which was nice.

The plan for tomorrow is an ultrasound on her liver to see if there is some sludge or blockage.  The biopsy has been put off because apparently it isn’t a good idea to stick a needle in a liver if there is an infection.  Makes sense really!

Then based on the results there will be a brainstorming with the big brains of Gastro to see what, if anything can be done.

Either her liver isn’t draining correctly or there is TPN related liver damage.  Not sure which one we want.  Neither really.

God has preserved her liver thus far.  For that we are grateful and praise Him.  So we keep asking Him for the green light for Omaha.  We are so close!

Thanks for checking in on us.

Aria got her transfusion today because the Dr was a little concerned that it was dropping. They don’t like giving her blood because it isn’t great for her kidneys, but when you have to sometimes trade off long term and short term consequences.

The antibiotics might be working as her temperature has been a bit lower today, hopefully she will be even better again tomorrow.

The other thing we would love to see is her stomach outputs change for the better. If you could pray for this, it would be great.

We’ll keep you posted.

Poor Hamish had the night shift at hospital last night and had a terrible migrane at about 2 am 🙁

Thankfully I had arranged with my sister to take Asher today and I will head in very soon to relieve him so he can rest.

Aria had an ok night but this morning had quite a big nose bleed which was a bit upsetting for her.  Thankfully the nurse and consultant were there to see it and help Hamish.

The plan is for another blood transfusion tomorrow because of the nose bleed and an ultrasound on Monday.  Her temp is mid 37s which is a bit better.

The nose bleed is a bit unsettling for Aria particulary but us as well.  New symptoms are always difficult to interpet particulary given the fact we aren’t doctors!!   We feel the sicker Aria gets the more she belongs to the hospital and less useful we feel as parents.  Yuck.  But the worst part is watching her struggle and decline, her life is really tough.

Anyway enough of that!  The more she struggles the more we cling to God and His promises to us.  And the fact Aria is His child and He has given us the special task of being her earthly mum and dad.

Lori- Aria has been on Omegaven for about 2 years now.  Perhaps that helped her liver from declining further or quicker.  We aren’t sure if we will be able to access it in Omaha though, do you know if Caed was on it?  I like your comment on the class photo- awesome!

Oh dear, Hamish just rang with Aria’s Bilirubin update.

273 🙁

That is a big jump in a week since the panic of 193.

Still, the theory is is that Aria’s liver is actually fine but the bile ducts that drain the bile are blocked.  That makes sense because her outputs which are normally dark green (bile) are pretty much clear.

I hope they are right and I am sure it is fine but it isn’t a nice feeling.  They have started ABX and we are in over the weekend and see how she goes.

Not to many people know the pain of looking into your daughters eyes and seeing brown and yellow.  Sucks.

Got my normal Friday email updating on transplant funding.  Nothing particular to report except lots of communication between all the parties and next friday there should be more news.

Aria has been having temps for the past couple of nights.  Just around the late 37s so nothing major but given all the other things she has going on we are a bit nervous.

After a bad night we took her temp in the morning and it was normal.  So we quickly popped up to Preschool so she could be in the class photo.  She did really well as there was lots of kids and it was a bit overwhelming.  But when we got home it was 38.1 and time to take her in.

So Hamish and and her are hanging in ED waiting for a room.  Done bloods and wee sample but I reckon it is the liver stuff because she looks super yellow.

We were so pleased she could make it for her class photo but I imagine it will always be an reminder of her liver sickness

Hopefully it is a short stay!

FUNDING IS APPROVED!

We are leaving on the 7th of Dec!  One more sleep to go!

Today was the first day we managed to leave Aria at Preschool by herself.  Aria loves Preschool but it has been a bit stop and start due to hospital admissions and holidays.

Although it was only for an hour after I managed to coax Hamish away.  Aria pulls out all the tricks in the book to get us to stay, she is quite classic.  Needless to say she was pulling on her Daddy’s heartstrings because that what little girls do.

Of course we left and Hamish went back an hour later to find she was completely fine and having a grand time with her littles buddies. 

Asher also went to Josie’s and has finally stopped crying and chasing me when I leave.  He had always been fine with us leaving until the last hospital admission and ever since he has cried when we drop him off.  But today he blew kisses and waved and I was relieved.

Aria is super excited about her liver biopsy next week and is counting down the days.   I even told her she was going to Theatre and she looked at me and you could see the wheels turning and then she smiled and said OK.  She is very excited about sleepovers at hospital and is planning all the things she wants to take.

Today I gave her a bath and changed her Wiggle Dressing.  What a legend, she didn’t even cry when I took off the old dressing.  Previously this has always been a bit of a mission (think ear plugs).  Then I took her to the supermarket to get milk and she walked all the way up the ramp at Pak N Save in Manukau which is quite a long walk at an incline.  We feel like she is doing well and keep forgetting she is sick!