2010 February - Aria MacDonald

We are greatly encouraged!

Aria had a great day today.  I asked the nurse if I could bring the pram and if Aria could sit in it.  Previously when she sits up in bed it takes at least two people to support her so I always have to ask for help.   Fluid in her body is pressing against about 1/4 of her lung capacity on both sides so they are super keen for her to be sitting.  The more that fluid drains the quicker she will get off the vent.

So it took about four people because she had all her lines hooked about to her pumps (about six) and the vent connected to a different machine.  So one did the pump one did the vent, one lifted her and the other spotted and I helped with the pram!

But she sat for a good two hours.  When we first sat her in she looked really pleased to be out of bed and in her pushchair.  Remember before transplant she spent more time in there than in her bed.  She coloured with crayons and felts, we read books and she pointed to the pictures.  I showed her some pictures on Facebook her Aunty Megan had just uploaded.  The corner of her mouth turn up and she scrunched up her eyes when she saw her cousins and Nana.  Was it a smile?  Very hard to tell but definitely was happiness of some sort.

They came back after two hours to put her back in bed and she wasn’t keen but they didn’t want to push her.  We all thought she would be really tired but she stayed up to about 3.30pm watching Wiggles on the computer.  She clapped and moved her hands and feet in time to the music.   She was sitting right up in bed with the computer on the meal tray in front of her.

At about 4pm she feel asleep with her arms around the blood sugar machine she insisted she wanted to hold.  Funny girl.

Asher is spending the night with Angie and Randy and their lovely kids.  So Hamish and I took the opportunity to go out for tea.  I was not keen to leave Aria but we were pretty sure after her big day she would sleep for at least two hours.  Hamish convinced me and the nurse said ‘go go-  I will call if she wakes’   So we went to Texas Roadhouse and both had big steak dinners.  It was so so good to eat a decent meal, sitting at a table with the knife and fork.  (in case you are wondering we don’t use Trust money for such luxury things)

So proud of Aria, it is really tough.  She just had surgery yesterday but she is full into life trying to make the best of it.  I am sitting here in her room watching her sleep.  She slept the whole time we were out and looks like she might be done for the evening.

The bad news for the day was that they still think she is pretty weak and looks like it might be weeks rather than days for her still on the vent.  She was so so sick going into transplant and with 9 surgeries her little body is tired.  But it is just time and we have time.

Today was going to be a big day and Aria was to start on intestinal feeds, 5mls an hour.

She went down for a CT scan to see if there is any pockets of infection or fluid that might be causing her temps spiking to the 38s.  Her white cell count is normal so it doesn’t appear like her body is fighting off anything.  Also it was decided to put some contrast into her bowel to see if all was ok and everything was heading down.

Unfortunately they found that most of the contrast leaking out of a hole at the bottom of her stomach were the bowel connects.  So she is back to the OR tonight at 6pm (1pm NZT) so they can stitch up the hole.

Best case- they stitch up the hole and Aria starts feeds in a week.

Worst case- the bowel doesn’t hold the stitches (as it is appearing they aren’t because of the repeat holes) and they leave the hole and put in a bunch of drains and leave it for 3 -4 months. There may be a hope to put a tube to by pass the hole later on and feed her.

So please pray for best case!  Drains in her abdomen are actually pieces of plastic pipe coming out of her side and they have a oval shaped container at the end to catch the fluid.   I don’t know for sure but I can’t see how we would be able to come home with those in place.

Anyway super tough day for us.  Aria is more awake and the pleading look in her eyes is painful to watch.

UPDATE POST SURGERY

There was a 3/4 hole in the third connection in her new bowel.  Hard to explain but there is a connection to the liver and a connection to Aria’s original stomach and where those to meet and join and go down to the rest of her bowel had come apart.  So Dr Mercer sewed it back up and he said it held the stitches very well (PHEW!) and he put a drain right next to it so if it does come apart and leak again we will be able to see it.

So another set back, feeds are off the agenda for another 10 days to 2 weeks to give this time to heal.  But at least it looks like it had been fixed.  Aria’s kidneys have kicked into gear and now they are her ‘rock star’ kidneys we have seen a big drop in her fluid.  Fluid also lives in organs so as the fluid dropped maybe the bowel torn away a bit.  Dr M described it better with pictures and hand gestures which I can’t use but I hope you understand.

Aria’s temp to settle to normal, been spiking up to 39.
🙂 Thanks- her white blood cell count is normal so not infection.
For two meetings, one at 5.30pm today (12.30pm NZT) with Chief Medical Officer and tomorrow 11am (6am sat NZT) with reporter from Omaha World Herald.
🙂 Thanks- liver kidney intestine doing great, might start feeds in a day or so.
For renewed grace and strength for Hamish and I, we are getting weary with burdens of hospital life.

Today was a rough day.  Hamish and I are struggling and sad right now.  So I really feel the need to post about the GOOD stuff.

Ok so Aria didn’t get the vent out for long BUT she did manage to pull out her NG tube.  Oops, it wasn’t on purpose, her thumb got caught when she rubbed her nose.  The NG tube goes into her nose and down the back of her throat.  they decided not to replace it and see what happened.  Great news was she didn’t vomit and all her stomach juices and bile came out her stoma.  Her intestine is working!  From the time Aria was 12 hours old she has vomited bile, because it was coming up rather than going down, so she has always had either an NG or gtube to drain it.   So at the end of the day they put a soft feeding tube in her nose into her tummy for FEEDING!  Not just yet but soon.

The head of transplant came in to chat and he was saying how pleased he is with her progress.  He was saying how very sick she was and he believes they got her transplanted in the ‘nick of time’  Praise God praise God!!!!  He said little girls often fight fight fight but once they fall off the cliff there really isn’t much coming back from that.  We see the fight in Aria so much, she has so much courage to battle on.

Aria and I had a wonderful Skype call with a class of 6 year olds at Nelson Central.  Their teacher contacted me to tell me they has been following our story from the Dom Post article.  They all asked great questions- one I didn’t have the answer too so I will have to ask at rounds tomorrow- clever kiddies!  They said thank you at the end and that they cared about Aria and I nearly cried, so very sweet.  Aria was asleep thru it all but they got to see her a bit.

Also we *think* we might of found a place to live!  We are pretty excited but nothing is certain yet.  It is very reasonably priced and is fully furnished and lovely and modern.  We visited a hospital family who currently live there and they love it.  Super safe, gated entry and access code to get in the building.  We will save trust money on not having to buy furniture etc.  The only bummer is that it is a distance from Bellevue but not crazy far.

Thank you for all your beautiful emails, lots of people had said they feel rude or shy to ask.  Please don’t.  This isn’t how we want to do things but it seems necessary.

Finally I thought I would remind you of our little Doco on YouTube.  My lovely friend across the hall reminded me when she said she watched it.  It comes in two parts, please watch both 🙂

Part One

Part Two

So we take a deep breath and feel like we are walking on air and egg shells!

Ecclesiastes 7:13-15 (New International Version)

¹³ Consider what God has done:
Who can straighten
what he has made crooked?

¹⁴ When times are good, be happy;
but when times are bad, consider:
God has made the one
as well as the other.
Therefore, a man cannot discover
anything about his future.

Well we gave having the breathing tube out a shot and it didn’t really go that well so, tube out day has become tube in day all over again,

We took Aria off her ventilator at about 11.30am this morning and replaced it with a nasal canula (a little tube that sits under your nose with a couple of prongs like you see on TV). She coped ok on this for a while but after testing the levels of gas in her blood suggested she needed some more help. This led to a full breathing mask over her nose and mouth to help push air in. This too didn’t do the trick either. Throughout this she was working really hard, sitting up, trying to suck those deep breaths in but all to no avail.

The decision was made to help her out and put the tube back in. This was done very quickly and efficiently and Aria is breathing much more comfortably now.

They will test to see if they can see what is causing the struggles to breath, it could be as simple as the fact she has been through A LOT in the last two weeks and is still just exhausted and needs to build some strength up again.

We are obviously disappointed to not have Aria off her breathing tube, and it feels like a set back. We are still happy that everything else seems to be working as it should and are looking forward to perhaps having another go at getting it out in a couple of days.

Again if you would like the password we will be using on the rare occasion for posts NOT relating to Aria’s health please use the contact form.  If you are Facebook friends with Anita, it is posted currently in her status update so please see there first.

Thank you for all the beautiful messages on the password requests, we really do treasure them.  Totally a bright ray of sunshine thru the clouds.

The expectation for today is that Aria will be extubated and will be back to breathing entirely on her own. What an exciting prospect!!!

To that end they turned her sedatives off at 6am this morning. So that meant a very early start for me wanting to be here for when she woke up, but thats a small price to pay for our little girl being more alert and on the road to being machine free. Hopefully the extubation starts a process in which more and more of the tubes and devices attached to her can be removed.

We’ll let you know when that tube finally gets taken out and how Aria responds to her new found freedom.

Also you have noticed that our last post was password protected. We have chosen to do this on some of our posts that aren’t directly in relation to Aria’s health and progress. If you would like the password to be able to access these posts, please contact us via the contact form and we will supply this to you.  Please note that we will only use the password on rare occasions.

Aria has had a good day as they continue to work towards getting Aria off her breathing tube. They did a couple of things today to help this become a reality.

Firstly they completed a procedure to drain some of the fluid which had built up in her chest cavity to help her breathe with a bit more capacity.  It involved a big needle into the space between her ribs and her lung.  Kinda scary for me and Hamish to watch but Aria did awesome.

Secondly and more excitingly Aria sat up in her bed this afternoon for about ten minutes. Anita supported her a little but she managed to hold most of her weight and lift up her head and look around a bit. Towards the end she fell asleep while she sat but after being out of it for two weeks, being sedated and having a lot of muscle damage in her abdomen she did amazingly well. This is good progress and will help clear out some more fluid…. we are hoping all this leads to the tube being removed in the next day or so!