2010 December - Aria MacDonald

There are officially FIVE teams on the case to crack the mystery of Aria’s headaches.   They are  Transplant (obviously) Renal, Neutro, ENT and Pulmonary.  Phew!

It makes for a VERY busy day.  All five teams round.  And the resident visits and then come back with their attending.  Lots of questions.  Questions right back to the beginning ‘ did you have a health pregnancy’ ‘was she born at term’ ‘any family history of XYZ’

Various tests ordered.  The biggest being an upper airway scope tomorrow night at 5pm.  Funny time but that was the only time the ENT doc was available and he squeezed Aria in.  Thankfully, everyone was telling us how good he was today.  I think they have imported him from Omaha Childrens to see Aria hence the travel and funny time.

Renal ordered at ultrasound of her kidneys and surrounding blood flow to them and everything came up roses so that is great.  They spent about an hour in here and Aria did really well.  Given that she has four kidneys it takes some time to look at them all!  So the high BP isn’t being caused by a lack of blood flow to the kidneys.

Transplant rounded this morning and they were pained, as were we, to see the very tired and head bobbing Aria.  She was falling asleep sitting up swaying back and forth but would refuse to lie back.  Actually it could be comical but it was really quite troubling to watch.  This desperately tired little girl unable to find rest.  The surgeon was very empathic and said ‘oh Anita this isn’t good’  She even tried to get Aria to fall asleep by positioning Green Dolly for her but Aria couldn’t rest.

It was decided to put Aria on the Hi Flow o2 and finally this worked!  Aria even said ‘that machine made me feel better’ .  They did a blood gas before they popped on her it and it came back not good.  Her Co2 was high.  But 45 mins on the hi Flow and a repeat blood gas came back perfect.

So maybe the Hi Flow will help her sleep better.  And hopefully the change in BP medication will keep the headaches at bay.  Still on the cards in scarring in Aria’s airway from where the trach was and this will be confirmed or not at the scope tomorrow.  This could be another reason why she can’t rest back.

Waiting for answers, waiting for improvement!

Thankfully we aren’t to fussed about Christmas.  Well we are trying to be rational about it.  Thankfully our kids are young enough that they haven’t figured out days and weeks yet so we can celebrate anytime 🙂  Perhaps we might get out in time but if we don’t that’s ok too.

We knew it was coming and our hearts were right although we are a bit surprised.

Aria went into today to the treatment centre for her regular monthly appointment for an IV infusion and breathing treatment.  We took the opportunity to ask the nurse practitioner to come and see her which she did.  Aria was particularly sleepy this morning and her rate of breathing had increased a bit.

The truth is that Aria has only slept thru the night once since she has been home from hospital after the second transplant.  Sometimes we get up for her once or twice a night, sometimes we get up for her 6-8 times a night.  It is a tough going.  Hamish and I are really tired and at our wits end really.

So together with her sleepy state, her sleepless night and these headaches it has been decided to investigate more to see if we can resolved whatever is bothering her.  Currently theory is is that the headaches are being caused by sleep deprivation because her breathing isn’t allowing her to get into a deep state of sleep.

So there are now four teams on the case.  Neutro, ENT, Pulmonary and Transplant.  An MRI of her head is scheduled at 3pm tomorrow.  And there is talk of a trip to the OR for ENT and Pulmonary to jointly look at her airway and lungs again to check of any changes.  Hopefully Aria should only be admitted for 2 nights.

In some ways we were a bit taken aback because when we asked the NP to see her we were expecting maybe a few extra breathing treatments and extra pain meds and to be sent on our way.  But honestly, if they can get to the bottom of all this and take Aria’s headaches and sleepless nights away, that would be the BEST Christmas present !!

Last year we were praying for the gift of life, this year the gift of sleep.  Obviously we are in a much better place going into 2011.

We feel like we really treasured and enjoyed the past week or so at home.  If you have the privilege of having your family under one roof this Christmas, give thanks and pray for those who do not.

Sometimes I feel like we are holding out breathing waiting for the next temp or Aria’s O2 requirements to jump up.  But things seem to be going ok and we are managed to tick the days off on the calendar and enjoy this Christmas season.  We just take it day by day and hope we get to fulfill the plans we make.  Yesterday Hamish and I got out to the movies while our friend Carol watched Aria.  That was fun and we were super grateful!  Today we went shopping and tomorrow is baking and church in the evening.

I feel privileged because I know others are not at home and they are on our hearts.

The new drug that Aria was started on has not proved to be the wonder drug to cure her headaches.  BUT it has made night time a bit easier and she is managing 4 hour blocks of sleep between pain meds.  The headaches hit at around 6pm after starting to bubble in the later afternoon.  She sat at dinner looking so sad with a wet flannel/washcloth on her head not saying much.  We decide to give her her pain meds and wonder of wonders she was a brand new girl within ten minutes! Walking around (after decided to go to bed) chatting and telling jokes.  Her fave was saying ‘Aria is in a good mood!’  ‘No Moo!!!’ while putting her pointer fingers on the side of her head to pretend to be a cow.   So grateful that her intestine seems to absorb really well and this particular oral med she is on does the trick for sure.

Anyway we are still wishing these headaches would go or we would find a reason for them.  But in the meantime we are enjoying a white christmas!

It has been a strange week in the Aria health department.  We have had some really really bad nights.  The headaches have become a big problem although today they were better and last night was a better night.   Also she has a cough which is pretty yukky but she is moving air well and actually sounds pretty good.

We had clinic today and I had a big list of things I felt needed to be addressed with Aria.  Thankfully it went really well and we have some new meds and dropped another one so we are hoping for improvement.  The current theory is that Aria’s headaches might be caused by high blood pressure.  We are hoping they are right although she is on pretty high dose of BP lowing med.  It has been explained, but for some reason that escapes me, kidney transplant recipients often have high BP.

Her liver numbers are trending down!  Phew!

Overall Aria is happy as.  Tonight she was yelling pbskid.org over and over.  It was funny. Obviously her fave website!

Two names have been on our hearts this week.  Matisse and Emerson.  Constantly thinking and praying for them.  Please God make Matisse’s transplant successful and please God heal Emerson.  Please join us, our hearts are burdened for them and their families.

The MacDonalds had a lovely weekend.  A snow storm hit Omaha on Saturday.  Snow and high winds lashed a big part of the Midwest, so we were tucked up inside enjoying frightful weather and our warm fire.  The kids looked out of the window in amazement and we were so thankful we were all home.

By Sunday the winds had gone and thankfully it blew a lot of the snow away so I jumped in the car and headed out to church in Bellevue with Carol and Cordell.  They had a Christmas service, drama and choir singing.  It was amazing and very touching.

Asher birthday celebrations continued too!  He wanted an Elmo cake for his birthday and boy did he get one!

Our talented friend Stephanie made it!  Talk about WOW!  Asher was very impressed and enjoyed eating it of course.  It was strawberry flavoured cake as per his request.  And then Aria informed me she wanted a chocolate Dora cake for her b’day next year 😀

Speaking of Aria.  She is doing ok.  Her headaches are back which is a bummer because no one seems to have a great theory as to why.  We got a call from the hospital this arvo and they said her liver numbers are up, her ASL and ALT in particular.  So repeat bloods tomorrow morning.  Perhaps it is just a little virus giving her grief.   She is still on O2 pretty much full time, gosh it is a pain lugging a tank everywhere.  But she is happy and laughing and talking and eating a bit.  So we just enjoy each day and try not to get to caught up with predicting her health.

Thanks for checking in on us.  Hoping your festive season is going well.

Happy 3rd Birthday Asher!

The MacDonald Family had such a great day!  We went and ate cupcakes

We went to the park across the road

We went to Chuckie Cheese, played and ate pizza

The important fact is:  We went!  And we had fun.  Sure it was a little stressful when Asher started licking the window in the fancy cupcake shop.  But hey – he is 3 right?

Seriously though, this little boy had such a lame birthday last year, we did nothing for him.  Thankfully Childlife kindly organised a little party with cake and I did manage to get to Target for a gift.  We had only been in the US for 3 days and were so tired and overwhelmed.  And Aria was SO SICK! So this year we tried to do heaps of fun things.

Asher has been such a gift on this journey.  He is our little light.  Our lives would be far far poorer without him and we are so thankful for him.  He has readily been embraced by five families here in Omaha who have looked after him and even had him overnights.  Asher is a brilliant boy and is an easy kid to spend time with.

He has struggled with our journey too, particularly the past 6 weeks with the comings and goings from hospital.  And yes he does fight with his sister and she with him.  But they are good friends, hence why he finds it hard with her being away from home.

Our prayer is that He will grow to be a loving and compassionate boy and man, loving others and God.

First up, our fellow kiwi in the US and a girl very close to our heart, Matisse got her transplant yesterday!  Oh happy day!  She had waited almost 4 years and we are so happy for them!  In some weird way the surgery is the easy part and now comes the recovery.  Praying and hoping it is days/weeks for Matisse rather than months like it was for Aria.  We have such a positive feeling about this and are hoping for the very best for Matisse.

This pic was taken today in a moment of cuteness.  As you can see the tubes are back.  Unfortunately Aria’s tube blocked off yesterday.  She is on a number of meds you have to crush up and eventually it gets clogged.  It was due for a change.  But we got the camera out in the mean time, it was kinda surreal to look at her face without tube.

Overall I would take NZ’s govt run healthcare anyday but there is something to be said about the speed things happen here.  I rang the hospital to advise them Aria’s tube was blocked at 2pm.  And hour later our healthcare company delivers two new ones (not the ones we prefer but never mind) and 7pm that night the nurse comes over to place it and take Aria’s blood which were due the next morning.  Awesome.

Aria HATES having NG’s placed, they are the worst.  Still we got it done in one go and she did great.  She starting crying as soon at the nurse arrived.  Asher immediately started giving her hugs and kisses and saying ‘easy peasy Aria’.  He was so super kind to her.  I am hoping that this journey is making him a compassionate and caring young man, it can’t be fun to see your sister crying like that.

In other news Aria was doing some excellent eating at dinner tonight.  She was putting corn chips in her mouth and crunching them up with her teeth and chewing!  We were very excited.  She would pretty much spit out what she chewed but it was progress.  She eats soup and ice cream and swallows that so she just needs to put the two things together.

Just wanted to say thanks again for the lovely comments recently.  They were so well written and well thought out and so compassionate.  Thanks for allowing me to struggle and express, it so helps with moving forward.  We can’t pretend we are super Christians, cause we SO aren’t.  I wonder if that is the message of our story.  Or at least my story.  My daughter is extraordinary but really I am very unsuited to this, it goes against my nature of wanting control and order.  But God has shown me a better way.

Oh yes and Aria is HOME!

…..this face.  TUBE FREE!  (don’t ask)

THANK you for your beautiful comments, they were hugely helpful and meant a great deal.

The past six weeks have been fairly brutal.  This puesdomonas has really knocked us for a six.  American translation- kinda like hitting a home run in the bad way.  This is really the first significant hiccup since Aria’s 2nd transplant.  A hiccup that could have long term implications or not.

My head is blank, there are no verses, there are no prayers.  Well there are prayers I guess although I feel like my faith is in free fall.  Why now?  We have been thru so much and there have been countless miracles yet my mind seems blank, like my memory is short and I can only think of this moment.  Feel sad and stupid all at the same time.

I feel like God might be asking us to go back to a life of bouncing in and out of hospital.  I can’t do it!  I can’t!  And the reality is that should that become the case, there is a finite period of time because this is a super bug.

Personally, I find hospital life really tough.  I struggle with the loneliness.  A four year old during the day for company and a two year old at night.  Do you know I actually get resentful and annoyed when Hamish walks Asher and I to the car at night and some poor person happens to get on the elevator with us.  Innocent person has no idea that they are interrupting the only face to face private time I get with my husband.   Don’t worry I don’t give them the death stare or anything!  Just my heart sinks a bit.

Sometimes I try and count my blessings.  At least I have this this and this.  But then I remember that I don’t have this this and this.  And I want THAT.  I want to enjoy the festive season and look forward to christmas.  I want to go home.  I want to have my family around to help us.  I want my house to be magically tidy and my dinner cooked when I get home.  I mostly want to be content in all things yet I find myself resentful in all things.

Someone else should be doing this.  This journey is a privilege wasted on me because I am short sighted.  I have seen to much and know to much and feel to much.  What is left to be said?

We are trying to escape from hospital tonight AKA discharge!  However the clock is ticking.

It is 3pm and the team hasn’t rounded yet, they are tied up.  Of course we realise that what they are working on is far higher priority than a bunch of paperwork to discharge Missy.  Still they can’t keep her another night cause they are saving lives right?  This is the part where we sound super selfish I am sure!

Aria health is really good.  I realised this yesterday as she walking and danced her way around the ward.  No headaches and only a short nap.  Lots of talking and even practicing some excellent letter writing!  Her outputs are fully back to normal!  No temps, very minimal O2 requirements.  All things are good.

So latest update is that she has to stay another night so they can put her back from 45mls/20 hours to 55mls/16 hours.  We said ‘no thanks, we aren’t going to stay another night cause of 10mls per hour!’  Considering her outputs are completely back to normal that doesn’t sound right.  Anyway the resident goes back to the fellow and the fellow hopefully asks the Attending!  Meanwhile the pharmacy closes at 4.30pm!Anyway we have one hour!

Occasionally I have heard from health professionals ‘well you have been here long enough what is an extra hour/day/night’   From the perspective of a family trying to keep things together thru separation- you don’t want to spend an single second longer that you have too!

Verdict:  Declined!  Another night please