2011 January - Aria MacDonald

There are words that I don’t like to hear.

One is :  Intubation

The second : TPN

Don’t worry intubation isn’t on the cards.  Aria is OFF O2 during the day!!!!

But TPN has been discussed.  I thought we were done with that stuff.

Aria continues to dump.  Lots of water coming out of her stoma.  Diarrhea for you and I.  In the meantime she is on IV fluids with a bit of sugar/dextrose to make sure she doesn’t dehydrate.  Her blood work and kidney numbers are looking great so we are doing a good job of that.

But she does need calories, food.  Bit sugar isn’t going to cut it.  So today she started on 10mls per hours of feed.  The hope is that it doesn’t make her gut mad and make her dump more.  Or it could really help stop the dumping and we can gradually increase up to her goal of 45 mls/24 hours and then 65/16 hours

We started at lunchtime and she didn’t have increased outputs, but tonight will be the test.  We are really really hoping she can avoid TPN.  That is our prayer.

Also, we have been having some real behavioural issues with Aria this admission.  Everything is NO! and everything is a battle, everything.  It is so unlike her.  Lots of yelling and drama.  Hamish and I were starting to tear our hair out.  Finally we thought all these admissions were catching up with her and she was showing signs of stress and anxiousness.  But it dawned on me as she asked me for pancakes and eggs at 6pm that she is hungry!  It came with a little tub of butter and she ate the butter and proceeded to crunch the plastic tub it came in in her mouth!

So this afternoon after the feeds had started she was a bit better, thankfully.  I was remember years ago when she would lose her central line for an infection and be off TPN.  A couple of days without TPN she would go crazy.  Well this is the same thing I realised, no calories for 3 days in the same thing.  I can’t believe how disconnected I am from Aria’s hunger signs, I guess we really don’t understand them and neither does she.

Anyway, hopefully tomorrow we can increase feeds and not go back to TPN.

Omaha is currently being covered in snow!  Finally some decent snow for the winter season.  The schools are closed and many businesses are too.  But hospitals are still open and the MacDonalds need to keep moving.

But needless to say THIS Auckland/Kiwi girl was a bit nervous about driving in the snow this morning.  The roads were being cleared but driving in the snow is a tricky business and you have to be focused and aware.  And experience helps too, which I have none!

I set out with Asher in the back, after shoveling the snow that has formed a small pile in front of the garage.  A few tricky moments getting out of the complex and round the roundabout but once I got on the main road and highway I was better.  LOTS of praying.  Lots. “bless our journey please God’

Finally got passed 72nd and knew there was a little hill on the way.  Hills aren’t great in snow.  You need to keep moving or else you will slide backwards.  And if you go to fast you start to wheel spin.  Suddenly the cars in front of me started to slow down and stop.  Nooooooo!  To my left a flash Jaguar was stuck and wheel spinning.  On my right a VW bigger car hazard lights went on and it slid to the side.    Things were getting dicey.  The car in front on me, Rav 4, was still moving and I followed their path as they avoided the carnage.  Their wheels started to spin too but they kept going.  ‘Please God keep my wheels moving’ was my prayer over and over.   My wheel never spun and I got thru.  I blinked back tears of blessing.  I had the most basic car and I got thru!  Thank you God!

Reminded me of this verse

Psalm 91:7

⁷ A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

Except my morning was:

⁷ A Jaguar may fall at your side,
A VW at your right hand,
but it will not come near you.

Kinda funny right?

Some would said.  ‘Anita it would of be better/safer/easier if you had stayed at home’  Correct!  But I felt it needed to get in and relieve Hamish and Aria wanted to see Asher.  Half the family needed the other.  Sometimes when you do the easier thing you miss out of the huge blessing that can come from trusting in God and letting HIM do something special thru you.  I could of arrived at hospital stressed from my trip but I arrived encouraged!

So Aria and I are spending the next 24 hours here and thankfully Hamish and Asher made it home safely.

Aria headed down for a scope of her transplanted intestine.  Things looked good.  And consistent with a viral illness which we know she has had.  Worst case it could be mild rejection.  But the GI Doc stressed worst case and very unlikely.  But we will know tomorrow.  All and all she is doing great and we just have to wait for this virus to pass.

Got back from the scope to find our stuff was moved and we got a bigger room!  YAY.  Was wondering how we were going to fit all four of us plus Nana in a tiny room!  And I have a proper bed to sleep in.  Yay, hopefully we will have a good night.

Thanks for checking in on us.

Well the news of the day is that we have bounced back into hospital.

So I think that makes three or is it four times we have been in, out and then back in a matter of days later. Now overall she is much better in herself than she was before this cycle started with her breathing improving greatly, however her outputs have shot back up again.

So we might need to get another scope to check in on her intestine just to make sure that is behaving itself and this is all just lingering Norwalk Virus.

We were wondering earlier what God is trying to teach us in this current pattern and if we are just too dense to get it so He keeps throwing us back in till we do.

Or maybe He is just teaching us endurance and patience and trusting in His timing and plans.

So Anita and I will continue to try and learn our lessons, rejoice in the Lord always (easier said than done we’ve found) and trust that God does all things for the good of Aria, Asher and ourselves and to His own glory.

We had the massive privilege of attending Meme’s funeral today.  We felt really nervous but really wanted to go and pay our respects and honour this amazing little boy.  Meme fought an huge fight, two transplants, and put up far far more than what the average adult could.  He was a wonderful little boy and we will always remember him as a Ninja at Halloween!  He has an amazing mummy and two amazing sisters.  Rest in peace Meme.

I feel so grateful to be Aria’s mummy today.  Everyday.  She and all these transplant kids are so strong and courageous.

Aria is home.  Turns out her and probably I had the ‘cruise ship’ virus or Norwalk virus.  Geez wish we had actually been on a cruise LOL!!  Her outputs are still on the high side so we are having to carefully watch and keep track.  Thankfully they are ok with us being at home and replacing the fluid ourselves by topping up her feeds.  Her feeds are going 24/7 right now, once things setting down hopefully she will be able to have time off the pump again.

Aria’s breathing and sleeping are also going well!  She is pretty much off O2 during the day!  Can’t tell you how great it is to not have to lug heavy O2 tanks everywhere.  She is having the same treatments as Cystic fibrous kids, percussion (or banging as we call it) twice a day and Aria is coughing up stuff from her lungs that has probably been troubling her for awhile.  She is still on her Bipap at night and there is debate in our house as to whether she needs it or not, we think probably not but doctors orders until we get this sleep study done.

Hamish’s Mum Christine arrives on Tuesday!!  Yay.  Looking forward to it.  The kids are really excited to have Nana visiting!!

We have to say that Aria is really really well.  We are so excited.

On paper, her bloods/labs look great!  All normal!  Liver, kidneys everything!  We are particularly excited about the kidneys being normal.  Her BUN has been high for ages and we have learnt to kinda live with it but maybe it is improving.

More importantly we feel like ‘old’ Aria is back.  Actually we haven’t seen her for awhile now.  She really has had such a run of bad health.  Her lungs and two bouts of pseudomona infections and this is BP/sleeping/headache issue.

She is walking around and laughing and having fun.  Physically she is pushing herself and trying more things like walking side to side and backwards.  Today she spent time standing on her bed and pushing the buttons on her vitals machine.  It was such fun helping her balance and ticking her tummy and laughing with her.

The only downer is that the headaches haven’t completely gone away, they are better though.  She only needs regular Tylenol/Panadol and she can mainly be distracted.  We are going to give it a week or two and then maybe do an MRI to check her brain again.

She is still in hospital.  Her outputs have decreased consistently everyday and she is also at her baseline.  They are ramping up her feeds slowly she should be on full feeds tomorrow and HOME.

Honestly, we feel so happy and so weary.   Really really hoping to string some weeks together at home and recover.  We feel like we have been hospitalised so much lately that home feels strange.

One of Aria’s transplant buddies got his pass to heaven today.  We rejoice for him but are so so sad for his family and those he touched.  This journey is so hard and we grieve for our friends and those who we have come to know.  And those who we know who are struggling with health concerns.  So times it is so hard to make sense of it all.  Always I just cling so tight to :  God is Good.  Sometimes that is the only answer.

Today is Monday!  What a weekend!

Firstly what Hamish didn’t mention, because he is modest, is that he looked after two preschoolers in hospital for two days by himself!  What a legend.  Particularly legendary was the fact Aria was admitted into a tiny hospital room.  Tiny.  And we know tiny because the rooms at Starship are, well, tiny.

Where were you Anita you might be asking?  Well turns out I spent most of the weekend with what is likely to be the same bug as Aria.  Except she coped with it just fine and I felt like I was dying at several moments during the weekend.  Clearly she is tough and I am not!  UPDATE for those intestine enthusiasts out there.  The reason Aria wasn’t as ‘sick’ as I was is because her intestine isn’t hooked up to her colon and it is your colon that spasms when you have a tummy bug giving you cramps.  That and the fact she has very little stomach remaining so I think that is why she didn’t vomit.

Anyway Aria is doing much better.  Actually she has been great the whole weekend Hamish tells me, walking, talking and happy.  She only needed 2mls of replacements over night which is great.  SO we are hoping to ditch the IV fluids, put her back to full feeds and get out of here.  Maybe today, although I doubt that.  But at least we hope to avoid a scope that was suggested for today since she has improved overnight!

Aria and Asher behaved so well in hospital for Daddy.  They are amazing kids.  And Hamish coped amazingly well with two kids in such a tiny space.  Thank you Hamish for being such a good husband and daddy!

Aria has been in great spirits the last few days. She has been lots of fun to be around and has been walking and talking a lot which is nice.

What has not been so nice is that those days have been spent back in hospital. Aria went back in on New Years Eve at about 10pm, she then proceeded to play and talk until about 3am when we finally got settled into her room. She has amazing stamina sometimes.

Aria is in for increased output through her ostomy. There has been a tummy bug going around Omaha and it would seem Aria picked it up at some stage. It seems to knock people around for 48hrs or so but with Aria’s suppressed immune system it may linger longer.

Yesterday there was something Aria found VERY VERY funny. Aria was holding her water bottle and it slipped and dropped onto her toe. She cried and water spilt onto the floor. I picked her up and sat her on the knee on her bed. Asher was with us and came over to give Aria a pat to feel better. Asher then saw the water on the floor and said “Asher clean up”. He then went off to the bathroom and came back with about half a square of toilet paper to clean up the big spill. I told him that he might need something more than a tiny piece of paper to clean up a big spill. Aria then starts laughing and saying “Huge Spill, Tiny Paper”. She kept on telling me about it all night and laughing about it. She has quite the sense of humour our Aria. For those curious Asher then followed my instructions on how to get a towel and cleaned it up properly, Asher is a legend too, he makes Aria so happy.

So while we obviously weren’t hoping to be in hospital so soon after the last time, Aria is still doing great, breathing wise, and her organs are still solid so hopefully this is a no real drama stay which will quickly be resolved.