2010 February - Aria MacDonald

Goodness what an original title!

It is Sunday evening here and the end of nice day with Aria.  Nice and mentally challenging.  It is hard to see her, puffy with fluid, pretty much asleep the whole day with a tube down her throat, three abdominal drains, one central line, one art line, one ng tube, one random hole where the last stoma was, a stoma, and to finish- a huge wound down the middle of her.

What a list.

Anyway actually it is only 2 drains now, one was removed today by a resident and a med student while I was having a shower.  The nurse said Aria was asleep the whole time and didn’t even flinch.

But the surgeon who did her transplant was on rounds today and said he was really pleased with her progress.  Aria’s liver numbers are ‘pretty much perfect’ quote unquote.  She is peeing heaps today.  Unfortunately she didn’t make much progress yesterday with getting the fluid off but today was three doses of meds to help her pee.  The Infectious Diseases doc was around and he is also really happy with her progress, her white cell count is coming down, now 42- make that 34 this monday morning.  A pretty good volume is coming out of the stoma, showing that it is working.

The amount of fluid she has on board is the main reason why the breathing tube can’t come out but we are really hoping with all the peeing today progress has been made.  They are changing her sedation and weening her off her currently drips so she doesn’t get withdrawals.

So things are really heading in the right direction.

New week next week, going to fully get into finding a place to live and getting my Nebraska state driving license.   Both those things scare me ha ha.

We have so many little things to be thankful for today and one big thing to be sad about.

But first up how is Aria?  She is doing ok.  Pretty good.  The bad news though was that she will be on the vent until mid next week 🙁 BUMMER.  Argh we totally want that breathing tube gone.  They want to get more fluid off her and the only way is for her to pee it out.  But they don’t want to flog her kidney with too much medicine to make her pee.  So it will take time and there is the mention of Dialysis, just for short term.  But no one wants to go there really.

Aria is in this weeks issue of the Womans Day out on Sunday in NZ.  Grab a copy and tell ya friends.  We are thankful for the support of the Woman Day in NZ following Aria’s story.

We continue to have lovely support from our Omaha friends.  Carol and Cordell managed both kids so Hamish and I could get out.  And Dan and Thomas visited with a BIG box of videos, yes videos- remember those.  The TVs here only have video players so it is a great place to send old videos that have been replaced by DVDs.

Had an email from a teacher in Nelson whose class is following Aria’s story.  So sweet a group of 6 year olds are cheering for Aria and keeping up with the news.

Artscapes for Aria also was successful!  There is still time to join in. Lou did 13 hours of travelling and lot of phototaking!  Wow awesome work Lou

Um what else?  There is more stuff, I forget, my jumbled mind is well, jumbled.

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Please don’t forget Artscapes for Aria happening today NZ time.  It is not to late to join in.  For a $10 donation you will get a beautiful digital photo of New Zealand captured by the lovely Louise Treherne.  Overseas people (and Kiwis)  you can join in too with payments via credit card online, leave your email in the comments section or email copmil AT ihug DOT co DOT nz

We are so grateful for this fundraiser happening while we are away.  The need to fundraise still continues because we have no idea how long we will need to live in Omaha, could very well be years (hope not!).  Remember all money is safely in Trust with the Kids Foundation, a registered charity.  100% of the donations to Aria go directly to her, awesome.

As for Aria, she is doing ok. The current plan is that Aria’s visits to the OR have finished….. unless they HAVE to take her down.

The breathing tube is in still, what needs to happen for that to go is to get rid of some of the excess fluid that she is carrying. Reducing the fluid she is carrying means that she will be able to breathe easier and there is risk of fluid in her lungs causing her to get a chest infection. We are hoping she responds really well to medication to clear the fluid and that she can be weened off the ventilator in the next day or so.

The other thing the Dr’s are keeping a close eye on at the moment is her kidney function. It is currently in the lower end of normal which is ok, however the anti-rejection medication she is on can be very hard on kidneys so they are monitoring this closely to insure that the new kidneys are keeping on top of things.

All in all she is doing pretty well, she is stable and they have her in a comfortable state. She wakes up and interacts a little every now and then which is nice. I for one am really looking forward to the fluid being cleared. It’s hard to look at your little daughter looking like the stay pufffed marshmallow man (Ghostbusters reference).

Hopefully in the next few days we’ll have the NO TUBE!! post we, and I am sure you, are looking forward to.

Today was the 8th trip to the OR for Aria.  She went down after lunch and we got a call pretty quick to say they had finished.  They put in a couple of extra stitches BUT DIDN”T FIND ANY HOLES!!!!!! 😀

AND the culture from last wash out aren’t growing anything really exciting or rapid (just a bit of bacteria) and there is really hope the ones they took at this wash out might be clear.

So overall rounds sounded positive and tomorrow might be extubation day.   Gosh that would be great although it will take Missy awhile to get her voice back after two week of that tube being in.

I spent a bit of the day sending out requests to apartment buildings for info.  We have a couple of nice places that look good, one includes a playground so that is nice.

Looking forward to posting a photo of Missy without a breathing tube in her mouth.

Positives

Aria’s bili is 3.4 or 61 and the rest of numbers are described as perfect

Her white cell count is dropping 70 today down from 109.

Update : Make that 62 at the end of the day

Her stoma is producing a bit of stool- that means it is starting to work- great considering it gets handled and stitched up all the time and bowels don’t like being handled.

Aria is less puffy getting close to being normal.

She is nicely sedated, calm but managing eye contact and communication.  She asked me to put on a video and choose the video when offered Barney or Winnie the Pooh (she choose Pooh).  She asked for hat for her and Green Dolly.  Bare in mind she cant talk so she does well to make herself known.  She also waved to Aunty Alex on Skype yesterday.

Asher had the best day ever yesterday at preschool and his teachers were so excited.  They were learning the letter L yesterday.  The task was to colour in the letter L with little pink pieces of sticky paper and Asher got his all inside the lines.  And when he got home he climbed up on the loo and did wees in the potty without being asked or prompted.

Negatives

Aria’s temp and heart rate are up.  Nothing major the highest being 38.2 but it is a little disappointing.

UPDATE Temp and heartrate are perfect now 🙂

There will be other trip to the OR tomorrow and they will continue until they stop finding holes and the cultures come back clear.  So this means that the breathing tube will stay too.

Joshua 1:9 (New Living Translation)

⁹This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.

UPDATE FROM TODAY

Aria had another trip to the OR.  They found another hole in her bowel and washed her out again and took cultures from inside her and put in another AND removed her central lines!  The original one Aria has had since April went and the line they put in at transplant.   They are being really aggressive with trying to remove possible sources of infection.  We weren’t that excited about it but whatever.  We aren’t so worried about line sites now she has been transplanted.  Her white count is down a little bit to 81 which is still really high but better.

Aria lies next to me sleeping soundly.  Really happy with the level of sedation, she is sleeping but we can still wake her and know everything is working good.  She was supposed to go to the OR at 7.30am but it is 9.30 now and it is looking more like 10am.

Things has been rough since Friday, no one expected so many trips to the OR.  But yet that is what is required to keep those nasty bacteria in Aria’s little body under control.  The idea of opening her up once is hard let alone 7 times!  And each time means another day on the vent to recover and another day with that nasty breathing tube down her throat.

You might of noticed the tone of the posts of the past couple of days have changed a bit or maybe they haven’t.  I feel like I have lost my way a bit to be honest.  My mind a mess of confusion and a heart of pain.

There a many things I don’t get about this new country I find myself in.  I don’t get the whole ‘Freedom and Liberty’ thing that Americans hold so dear.  I don’t get the food and things like ‘Cool Whip’  I don’t get that Christianity seems to equal a particular political party.  I don’t get the health care reform debate.  I don’t get many things there.  Which is hard because in NZ I got most things and I want to understand this new country I find myself in.

Don’t get me wrong- I am not criticizing.   And I don’t wish to start a debate on these things, I intend to ask others in private to help educate myself.

And more importantly I don’t get this new position I find myself in with Aria.  This is all a completely new journey, brand new.  We used to know everything (well within reason) and do everything.  And a new team of people.

God has this brilliant way of speaking to me when my ears are closed.  A great piece of advice arrived in my inbox from a member of our medical whanau challenging me to view Omaha as an extension of them.  A little ecobulb turned on in my head.  Yes!  I need to change my thinking.

And now we are right by the nurses station we are more in the hub on PICU and are meeting more people.  I don’t have permission to link their blog but we met a family who God has given a big and amazing journey too.  I read their blog with tears as I read their courage and faith.  I totally realised I need to get over the Poor Me’s and cancel my Pity Party.

Can you see the verse at the top of the of the post- how awesome is that?  Today is a new day- holding tightly to to His promises and refreshed with new courage 🙂  God has done AMAZING things for our girl, never ceases to amaze me but sometimes it is easy to get lost in the noise of life.

Sorry to all those who are reading this blog thinking ‘Hello isn’t this ARIA’s blog’.  Yeah sorry I hijacked it.  Will be back to regular scheduled programming shortly.

At rounds today a bunch of things happened.  Lets just say it wasn’t easy and it is hard doing this HUGE thing with a new team rather then the one you have know for years.  But moving on the decision was made to take Aria to the OR again at 7.30am tomorrow.  Again AGAIN!!!  Her white cell count is up and she is fighting an infection.  So they have changed the ABX and another wash out should do the trick (ha- we’ll see)

So this means that annoying breathing tube is still in.  Since last Saturday Aria hasn’t been able to talk or sleep with her mouth closed.  Can you imagine having all these people doing weird stuff to you and not being able to talk?  Would be like being trapped in your own body.  Yesterday she started reaching around and seeing what was going on with her body.  She felt her tummy wound, I wonder what she thinks of it?

Because she is so awake we agree at rounds to give her some sedation to keep her asleep today.  If she is asleep she isn’t distressed and if could make it thru one more day with the tube in then it should be able to come out tomorrow.  Since she woke this morning she has been distressed and grabbing randomly at her lines, drains and breathing tube.  So sedation was looking like a good and safe option.

We started meds at 10.30 and 4 hours later she still wasn’t settled or even close to being sleepy.  I spent almost 4 hours poised over her watching her arms to make sure she didn’t grab anything and lifted her 18kg body up up up as she kept thinking she was sliding down the pillow.  Finally now at almost 6pm looks like she might be sleepy.  Hard work.

Also looks like her diaphragm nerves may have been damaged during one of her many OR trips.  This is nothing major and will repair in time but means she is breathing very very heavily.  Honestly watching her breath makes you tired, can’t imagine how hard it is for her!

So today has been very busy.  We are so thankfully to Fran and Dan and the boys for taking Asher off our hands for the arvo and for all the love over the past two days.  They have brought enough food for an army and the boys brought pictures and other things for Aria.

Sorry those I owe emails and phone calls too.  Had to cancel a couple of things today cause it just wasn’t going to happen 🙂

Thanks for checking in.

HIGHLIGHT- Aria was just clapping along with Barney, or trying to at least, pretty hard with big heavy fluid filled hands and arms.  She choose the Barney video and the song was about clapping.  So she is obviously listening despite her sleepy dozey state.  Go Aria, she is so amazing.

Darn- some more bumps today!

Aria went down to the OR again.  The 6th time in 8 days!  Crazy

They found a hole in her bowel from her NG tube in her nose and they moved her stoma again.  Hamish and I were frustrated to hear both of those things.  Three surgeons have moved the stoma three times each time leaving a hole in Aria’s body to heal.  Thankfully this time it is back in the original place, so there is only one hole to heal.  But it will need to be moved again at some point as the organs grow.

The NG tube is very carefully placed and we found out today that Aria pulled it out the night before last and it was just put back in and the placement was not xrayed.  This is disappointing.  Anyway there is a sign up now by her bed saying ‘Do Not manipulate NG’  So that gets the message thru.

I talked with the transplant fellow and his opinion was everything is going well with Aria overall.  But these are bumps of the road.  Which are totally expected.  There is a lot to be positive about.  But the bumps are difficult and they mean setbacks.

Sometimes I wish someone else could write this blog, someone who wasn’t so emotionally involved.  Then perhaps you would get a more balanced view.  Although I do think we try to be positive as possible but at some point it is helpful to be honest with y’all.

So another difficult day for other reasons that won’t make it on to this blog.  It is Valentines Day here.  A BIG deal in the US.  The MacDonald family committed a bit of a cultural faux paux on Friday.  Asher had valentines day party on Friday at daycare.  Still not sure what that is but it involved cake.  Anyway he came home with all these lovely little cards and lollies from his buddies To Asher Love From So and So- little valentines.  We felt pretty terrible- had NO IDEA we were supposed to get cards and things.   We are foreigners in a new land, sometimes it is hard.  But loving V day cause I have a huge yummy heart shaped cookie here from Carol and Cordell’s neighbours!  How nice is that?

Highlight of the DAY!

Cordell came in to visit and brought us a giant heart shaped cookie from his lovely neighbours.   As he was leaving he held Aria’s hand and said goodbye.  She was asleep.  As he turned to leave Aria lifted her hand and waved to him! 😀 We were so excited.  Awesome.  A little glimpse of our Aria’s personality that we are missing so much.

Did you feel that?  That was a pretty big bump in the road for Aria yesterday.  Or maybe we should compare it to the many potholes on the street of Omaha.  It was a pretty deep pothole.

So it is fair to say it a setback in Aria’s recovery.  At least that is how the surgeon described it.  She will remain on the vent thru the weekend.  Because they had to replace her blood they pumped her with fluid so she is back to being pretty puffy again.

Yesterday was pretty tough.  Hamish was dropping Asher at preschool and was going to run some errands.  But suddenly Aria’s lips seem to change colour to white and she looked very very pale.  Then it was all on.  Thankfully all the doctors were about to come into her room for rounds away.  The surgeon got the OR booked and everybody piled in her room to get her transported for surgery.  At the same time a different team syringed blood into her central line.  Normally it goes thru on a pump at X mls an hour but it needed to get into her body FAST.

We as always just so thankful for God’s timing.  That this didn’t happen at midnight on the weekend when the surgeon would of been home.  So thankful that they are amazing here at Nebraska Med, everything happens very quickly.  Aria was sorted (or being sorted) and off to the OR within about 15mins.  Also thankful Asher was at preschool that day so Hamish and I managed a little time together while Aria was in the OR and had the day to fully focus on Aria.

The team here has always made it clear there were going to be bumps and potholes.  Aria is also still battling infection in her abdominal wall.  Her belly has a lot of healing to do and those organs have a lot of growing to do.

So we look to the Great Healer and the Great Physician who can do more that we can even ask for or think of.   He is totally the driver of this journey.  We trust Him in the bumps and potholes of life

Aria has been rushed down to the OR by the medical team because her blood test results this morning showed an extremely low blood count of 3.

Please pray for Aria and the team as they look to discover why the count has plummeted so quickly. Also pray that they will be able to keep her stable and that she would not bleed during the surgery.

We were expecting bumps on the road post transplant and this is one of them, we are concerned by this turn obviously but are clinging to God as our source of hope, strength and comfort.

UPDATE: Aria has come out of theatre, her blood count is back to being about 10 which is pretty good. A few small things were found that may have been bleeding a little but nothing major to report. She is pretty awake in PICU now, still not happy to have her tube in but not trying to yank on it either.