2010 July - Aria MacDonald

It is always a hard decision each day as to what to blog about.  Part of me would really like to blog about the frustrations of the day.  There were many.  Including a 5 hour trip to the hospital that should of been an hour max.  And despite many phone calls and conversations we still don’t have a solution to the problem with Aria’s O2 stat machine.  She could be on O2 at night and not even needing it!!!

Regardless during the 5 hours Aria and I did have a really nice time together.  She has really sparkled up since the 2nd transplant.  She is so funny and such a joy to be around. We told her this morning she has a trip to the hospital today and she said ‘Starship!’   Ummmm not quite Aria.  We told her the name of the hospital here is the Nebraska Medical Center.  Not nearly as cool or as kid friendly to say as Starship.

My heart is heavy tonight for two transplant little girls, one we know, Emerson and another we don’t.  It really puts my complaints about life into perspective BIG TIME.   It is 11.30 pm here and I just can’t sleep, terribly burdened with the fact my two precious children are sleeping in the room across from me right now.  Sometime I can’t even believe it is true that God would bless us SO MUCH.

Aria had clinic today with the transplant team and we got to see the surgeon this week which was good.

Aria is still doing well.  Her kidney and liver numbers are normal!  Feeds are going well.

The only major (ish) concern is her rash/skin condition.  Her EOs are very high meaning she is having an allerigic reaction to something.  What that ‘something’ is is a bit of a mystery.  Her feeds are a type of formula for allergies so can’t be that.  We are only using olive oil and organic shampoo and body wash (which is beautiful BTW).  We use eco friendly natural laundry stuff.  Mmmmmmm.  So we watch and waiting and hope it will improve.

The PT and OT sessions are going better.  Still having to leave once a session and give her a time out.  But she does heaps better when we return.  She is getting stronger even day, it is so cool to see.

Aria is only having O2 at night and on a minimum setting.  Of course we aren’t getting a good reading at night on her o2 stat machine so she could be doing even better.  Hoping they might agree to take the trach out next week at pulmonary clinic.   That would be awesome cause it is a bit of a pain, but will see what they say.

All and all her health is great.

Been going over in my head as to whether I was going to blog about this.

This week has been pretty busy.  The grandparents left and there was lots more emotion associated to that than I thought there would be.  We have been having problems with Aria’s heartrate and O2 stat machine not reading correctly.  Lots of frustrating phone calls later we are hoping for a solution tomorrow.  Aria has been spike little temps too around 37.4-37.8.  38 is the magic number, if she hits that we have to call the hospital 🙁 She has periods of great behaviour and periods were she seems unhappy and demanding.  It’s a challenge.

Today I made a decision for me, to attend a meeting to do something that needs to be done.  I left Hamish with the kids this morning and walked to the car.  I had left it unlocked last night.  Do you remember me saying Hamish and I have been doing stupid things with keys and carseats.  Last night was my turn.  Needless to say my heart sank when I saw our stereo face plate gone and it sank further when I opened the glove box and saw my very handy GPS gone 🙁  I am from South Auckland, I should know better.  Despite it’s reputation, this is only the 2nd time I have been a victim of crime.  Manurewa 1 Omaha 1

I decided not to go to my meeting and went upstairs for a cry, along the lines of ‘we are parents of a sick kid- who would steal from us’ and ‘how could I be so stupid’  Of course it wasn’t personal and whoever these people are they are we gonna love them like Jesus does. Threw away the tissues and went to play with the kiddies.  Aria had perked up and along with Asher we had some nice laughs.

There was still time to make the next meeting so I left again.  Where was I going?  No not AA.  WW actually.  There is nothing like putting it all out there too 500+ people to help you commit to something!

I was SO NERVOUS.  I shouldn’t of been.  One of the many things I love about Americans is that they are so expressive, warm and friendly.  Made for a very interesting meeting, lots of talking and tips and I sat there totally interested.  Later the leader had a little private session with me and the other newbie.  I spent 2 hours there!  Walked out feeling so positive.  The other newbie there asked me were I was from.  Turns out her brother lives in Whangerei.  The leader (who has Crohns) ask my why I was in the US.  She so was kind and hugged me and insisted I take two big WW guides and a points calculator as a gift from WW!!!  So very generous.

So yes, this is a personal blog not much about Aria but about our journey.  God so often shines His light in the darkness thru the actions of others.  Like the donut lady across the road who gives us boxes of donuts and the cashier at the hospital gave Aria her pink and purple nail polishes she hadn’t used that much.  Yeah there are some people who pinch your stuff and hurt your feelings but there are others who are super awesome.

AND Aria didn’t have a temp today and was lovely and happy all day.  Sweet girl.

God is good.

Watch a clip of the kiddies

My kids love their grandparents.  We will be sad to see them go.  How about the perfection of God’s timing in allowing them to be here for our transition home?

Can you see the smile on Aria’s face?  She smiles all the time now for the camera.  We can see her health improving everyday!

Thanks to Bob and Christine for making the sacrifice to come.  And my sister too.  It isn’t easy coming into this crazy life that we have been called to lead.   Not sure when the next time will be that we will see them but thanking God for his provision!

More photos added to Facebook

It is Saturday morning here and two more days until the grandparents leave.  Yikes!

Aria is having a lunchtime nap.  She was pretty grumpy this morning so we put her down for a nap and she was sleep in minutes.

Good news is that our nights are greatly improved.  I only had to get up once last night.  Mine you it did involve topping up the feed pump, stripping the bed, changing Aria’s PJs and nappy and suctioning her.  That’s that fine though.

We got a call from Make A Wish yesterday!  How exciting!  They are coming to the house next week to talk to us about Aria’s wish and do the paper work.  At this stage it is looking like a trip to Disneyworld in Florida and staying at Give Kids the World.  I think Aria would love a family vacation and because we are coming home wishing for a certain item isn’t probably not the best idea.  Still they will come and talk with her and us and see what she would like.  All of this is pending Aria’s health and permission from her docs of course.  I just can’t believe we might have the opportunity to do this thanks to TWO amazing organisations!  Completely cool.

I am currently home alone with both kids, kinda weird.  Then I remember this used to be my full time job!  I think I am outta practice so glad one of them is sleeping!  Better go!

Another quick update for today, it is late here and we are all a bit tired.

Clinic went well.  Not half as fun as clinic with Dr E but still good.  We had lots of visitors, one of the nurse practitioners from PICU made a special visit down to clinic to see how Aria was doing.  One of Aria’s PICU nurses was floated down to help with clinic and we were really happy to see her, kinda like seeing an old friend or something like that.

Good news is Aria’s kidney and liver numbers are on the higher end of normal.  “We’ll take it!” I said to the Doc.  Considering she was on dialysis 4 weeks ago and bronze like a statue 3 months ago it is all good news.  As of Monday she is no longer even on a med to help her pee- how amazing is that?  Bloods once a week!  yay!  Her white blood count is strangely high at 33 which is a lot higher than normal, no great answer for that.  Still battling a rash and allergic reaction to something- not sure what that ‘something’ is.  Mmmm But all and all they are happy with her and we will be back in a week.

The GI doc we saw today said it was a real privilege to be the one to see her at her first clinic.  Everyone is so happy.

Next was PT and OT.  Pretty much a disaster.  Hamish, Nana me and Ashie had to leave it was so bad.  She just refused to do anything and threw herself on the floor.  Bizarre!!!!!  This is NOT the Aria I know. 🙁 still they just practised getting to from lying to sitting, she wasn’t getting away with doing nothing.  We have some behavioural issues to deal with with our Miss Aria, it is going to be hard work.  Plus her tired body wants none of this.  BUT we have to work those bones and muscles- she has been sitting around so long a fracture could be next on the list of things to deal with.  Sigh, Poor Sweeties.

Sleepful is not a word, but it is for this post.

Just wanted to quickly update to say Aria only woke ONCE last night at 5am!  No Alarms, only suctioned once cause we thought we should.  She settled back to sleep quickly too after we got what she needed.

She didn’t pull any of her dressings off cause she safety pinned her nightie together- totally did the trick.

Thanks for praying and thanks for the advice.  Not sure why or how she managed to sleep thru the night but hoping it continues.  Thank you!

Since Aria has been home sleep as been at a premium in this house.  Last night she managed to pull of her stoma bag and wound dressing THREE TIMES!!!  Messes each time to clean up in the middle of the night.  Bribes, threats and discipline did nothing.  She is determinded.

Unfortunately at night she has no voice to call us and I think she finds that hard.  So she acts out to get our attention not realising pulling off her stuff doesn’t wake us up.  The other thing she does is put her oxgyen on her head so her O2 stats drop, the machine alarms and thus we come running 2am, 4am, 6am etc etc.  She used to pull off her toe probe but now that is taped to her toe and a sock is taped over that.

UPDATE- I should of said we have tried a bell.  She rang it constantly all night.  Our aim is to train her to sleep thru the night and settle herself back to sleep and mum and dad need sleep too.  It is a very tricky balance of attenting to her needs and training her to her new environment.

So we have raided Target today for safety pins and outfits to ensure she can’t access her tummy.  Still don’t have a plan for keep her o2 on her trach and not her head but we are working on it.

Basically she isn’t sleeping.  This morning I put her back to bed at 8am and Hamish took the big suitcases under his eyes back to bed too.  The TV was on, Asher was yelling, Nana and Poppa talking, the dishwasher on AND the door to her room was open just metres (yards) away from all this action AND SHE SLEPT like a ROCK until she was woken at 11am by the nurse visiting.  Seems like Aria is used to the hussle and bussle of the PICU and is needing to readjust to a quiet house at night.

I feel guilty I am not bouncing off the walls with excitement that Aria is home.  Life is difficult I guess looking after a high needs little girl, constantly watching for signs she is sick and making sure supplies are ordered etc etc, doing meds, travelling to appointments etc etc.  My mind goes constantly running thru everything.  Both Hamish and I keep doing stupid things, mainly involving carseats mix ups and keys.  That’s what happens when your mind races.  But the Aria IS HOME and there is A LOT to be thankful for and I am but…….

The crazy thing is Christine is here doing most of the housework, tidying washing etc.  There are meals to cook and organise but the reality is we aren’t even doing all the household stuff and we still aren’t managing so great.  Mmmm.

Over all of this is the sadness and pain from what we have experienced the past 9 months.  Sadness/happiness at what Aria was and who she is now and vise versa.  The work that needs to be done.  Those  big questions at 3am when you are awake.  What happens now? When will we get back to NZ? And other thoughts like relationships that need to be mended and pain over sacrifices we have made to be here like my sisters wedding I am unlikely to be able to attend.   Sadness and healing that needs to take place.

I know- it is one of those blogs.  Perhaps you are thinking- that’s nice- wheres the pics of Aria?  We will post a happy pic filled post and update you all on her clinic appointment, first one tomorrow with the surgeons!

We tripped in to UNMC for the first time since discharge.  It was for a Physical Therapy (PT) session.  Aria’s least favourite thing too do.  Oddly enough it is also mine.

This morning the nurse came to the apartment to draw bloods.  Also a fairly vile experience.  Aria is SO BRAVE!  They have to use a needle to find a vein to draw the blood.  She holds out her hand to the nurse and says ouch ouch but doesn’t fight or kick or anything like that.  Super brave.

PT and feeding therapy are two things everyone else is keen about but I couldn’t give a monkeys about.  Why?  Cause Aria doesn’t.   Aria doesn’t care that she doesn’t walk and it quite happy not eating.  And we are happy cause she isn’t on TPN anymore that was destroying her liver. She is on her nose noodle juice.  Boring old formula going straight into her brand new bowel and she is doing quite nicely thanks.  Despite what the front page of the Manukau Courier might report she isn’t eating, rather tasting foods and we are ok with that.

We have to choose if we want to do mean feed therapy or nice feeding therapy.  Errrrr- think we will choose the nice one, this poor girl has been thru enough!  Feeding therapy is where they teach kids to eat.

Back to PT.  Aria had a fairly wonderful meltdown and pretty much refused to do anything.  I sat there almost crying cause they wanted her to do things she really really didn’t want to do.  Aria is so weak, it is so disappointing that all the effort we put into her walking is gone and we have to start again.  I feel so bad for her.

The PT lady sat Aria on her knee and got Aria to reach forward and down to pick up some balls on the floor.  She said “Aria, reach down and pick up the purple ball”  Guess what I did??  I reached down and picked up the ball FOR ARIA and handed it to her!  DUH- so NOT the point of the exercise!!  As stupid as I felt it made me realise this instinct I have to help Aria and bring her things but really I am not helping her at all cause she needs to learn to do things for herself.  I have sat by her bed for months wanting to do what little I could for her and now that all needs to change.

Aria did warm up a little by the end of the session but spend most of the time crying for her pushchair/pram/stroller.  The PT therapist suggested that perhaps Hamish and I could think about sitting in the waiting room next time.  Or at least using that as a motivator to get Aria to do stuff.  Sounds horrible right?  But this girl does not want to move her tired body.  Fair enough- it have been invaded how many times?  Poor Sweeties.

FYI- we are still having a great time at home 🙂