2010 March - Aria MacDonald

Today was a really hard day for Aria.  They had to take her off a pain patch she was on because it was lowering her blood pressure AND they started her on steroids.  Have you heard of Roid Rage?  Maybe Aria had that and a bit of withdrawal from the pain patch cause she was pretty wild today.  It was really hard for Hamish who spent most of the day with her.

All in all I think that she is doing good, all her vitals are stable and it looks like she is responding to the ABX.

You know when you live in a hospital you form a little community of people struggling with the same thing.  You compare notes and encourage one another.  And ask ‘How is your baby today’   Hospital life, esp in PICU is hard hard hard.  You watch not only your own suffering but those around you.  Sometimes there is such awful tragic circumstances you realise your heart is broken for yourself and those around you.  You realise your nightmare could actually be someone elses dream.

For those of you of with children with breath in their body, a beating heart and hope for their future you are living a dream.  I am living a dream as I look at my girl.  A dream.  There isn’t even a word to describe the lives of those with healthy children.  But you are a very very blessed.

What a day!

First off- the bad news is is that Aria’s blood is culturing bugs.  STINK!!!!!!!

Up until now she has been fighting infection but it has only been in her bowel/abdominal cavity.  Now it is looking like the bugs have leaked out into her blood and this is not good.  So we are in for a rough couple of days I think while the change in ABX kick in.

Last night we had a bit of a scare.  Aria was on a sprint and sudden she woke and got really unsettled and a bit wild.  Then she started de -stating.  She has a little light on her toe to measure her heart rate and the oxygen in her blood.  It should always be 100% but it started to drop 80,70, and the alarms went off and the nurse quickly bagged her and gave her a puff of oxygen and it bounced back from 15 (eeek!) to 100 within seconds.  So the sprint was quickly finished.  The same thing happened this morning when they tried again (except not as bad).  So her vent settings are up until she is well enough and the infection has passed.

So please keep Aria in your prayers.  She has had a really busy day with her vent, wound vac, central line tubing being changed, a cath put in and blood pressure every 10 mins!  Finally we are having a rest.  Her heart rate is still early 100s and white blood cell count is still good at 17.  But we need clear cultures again.

Today Aria got out of bed into her push chair/pram/stroller for about an hour. She was a bit concerned about it at first but after we snuggled her up in her blanket she relaxed a little and seemed to enjoy the change of scenery. While she was there she did some colouring and reading which was nice.

The sitting up is great to keep on building the muscles up to support her with her breathing. As her diaphragm isn’t so hot, she needs to use all the other supporting muscles to compensate. If we keep working at it and she does well, we might be able to give extubation another crack.

Aria also did well today with other things. She did really well at music time. She showed as much interest as she has for a long time and happily banged the drum and shook her shakers along to the songs. It was pretty cool. She also enjoyed playing with her Counting with the Wiggles book. It is a book where you count different things and then use little magnets to say how many things there were. She did really well picking out the right numbers and doing her best to stick the magnets to the page. I think she really enjoyed playing with something and having a bit of different stimulation.

All in all it was a good encouraging day. The road ahead is still long and I’m sure it has more bumps and curves but it is days like this that give us encouragement.

You may be aware that Aria has a breathing tube in her mouth and throat that passes between her vocal cords and into her lungs.  This is because she isn’t strong enough to breath by herself (yet!) because her right diaphragm is temporarily paralyzed.

Anywho, this is what Aria tell us without being able to speak.

Please read me a book

No not that book- that book

Please make sure my feet and legs are covered by the blankets at all times

Please stop messing with me docs and nurses

I am going to close my eyes and pretend I am asleep so they don’t mess with me or so they will go away.

I am ok with you messing with me but after too long I am going to get fussy

Don’t leave my side when someone is messing with me mum and dad.

I am sure you are really nice but I am really only interested in my mum and dad.

Please don’t go mum and dad

Please tell me when you leave the room and where you are going mum and dad.

Ooops the heart rate and oxygen probe has come off my toe!

Please give me a hat (a wet washcloth/flannel) for me and one for Green Dolly.

Here is the hat back, it did not pass my strict quality control standards for wetness, try again.

Thanks, that’s better.

Which movie/dvd/netflix I would like to watch but the Little Mermaid and Winnie the Pooh are my faves.

I really hate this breathing tube but I am doing my best.

I am finished sitting up and I want to go back to bed.

Can I hold your hand Mum?

Aria did really well today with her exercises.

They have her building her strength up so she can hopefully get off the ventilator at some stage. The exercises stopped for a little bit while she was in her distressed state of last week but now they are back in full effect now she is calmer and happier. So each day she is having two sets of exercises. First there are her sprints, which is where she initiates breaths all on her own rather than having the machine help her. Secondly there is sitting her up with her legs dangling off the edge of the bed to build her supporting muscles and to help clear out the fluid in and around her lungs.

She doesn’t particularly love the sitting up part but she does really well with her sprints. Today she was even sitting up while sprinting and powered through it, well done Aria!!

In other Aria news, her temperature is under control and doesn’t seem to be spiking so much, her heart rate is down around 100 which is really good and her white blood cell count is slowly dropping.

All in all she is better than last week and doing pretty solidly.

Thanks for stopping by.

Hospital life sucks just quietly or maybe not so quietly now that I have just posted it.

Permission to have a moan?

Came in this morning to the end of a PT session with Aria.  Apparently they sat her up on the bed and dangled her legs and she did well.  I was mad and upset at this.  No one told us they were planned to sit her up and it would of been nice to have the opportunity to be there to support her and perhaps enjoy her a tiny bit.  Yes- we live in a strange and bizarre world where your child is not actually yours but really is the child of the hospital.  We sit at her bedside and try desperately to play some meaningful role in her life.  I looked up and happened to glance around the room and saw ‘Aria weekly schedule’ stuck up on the wall.  No one told me it was there or gave us a copy or consulted us on the specific times.  Lovely.

Moan 2

Our life is bursting at the seems.  Almost four months in a hotel room in completely doing my head in.  We have stuff for four people in a hotel room space.  You tidy it, it gets messy.  I have one draw for my clothes and trying to find spaces for stuff is proving difficult.  Plus- between spending all day with Aria or running around after Asher who wants to tidy and spend time doing dishes in a space not design for long term use.  Asher does so well but trying to  raise a two year old in a hospital is hard work.  Yes we get ‘The Look’  meaning this is an adult hospital and small children shouldn’t be running around in it.  Well too bad, this is his home- am I going to keep him trapped in either his sisters Picu room or a hotel room.  How is that fair to a healthy two year old?

Moan 3

Relationships- it is hard maintaining relationships in this environment.  Aria’s PICU room is like Grand Central station.  Doctors, nurses, PT, cleaners, consults from all the teams involved.  It is impossible to have a private conservation.  For me, I am a private person and like to be able to talk to people- like my husband, without someone else in the room.  Hamish and I have a lot to talk about and it is hard and frustrating having to text and skype instant message cause it is the only way to maintain privacy.

Not to mention communicating with others.  This blog is a blessing and a challenge.  People can read all about us and Aria and unless we make the effort to communicate personally one on one with people we lose out. Perhaps it is modern life and things like Facebook which give us all the perception of human connection without the reality of it.   And often times things are so difficult I feel embarrassed to email personally or simply lack the energy.   But when I do get a phone call it is tough to talk honestly (see above) or an email or letter and feel bad for not replying even though I deeply cherish it but am so drained to reply and then that is also just one way communication!

I am so thankful to the wonderful people in Omaha who have taken us on board.  I wonder if they knew what they were getting themselves in for.  When I came here I felt a keen sense of guilt with these relationships.  I hate to be a taker and not a giver.  I feel like we desperately need their support yet I am doubtful that I input into their lives like they do to mine.  And it is hard to ask people for help, to take time and travel and come sit in a boring hospital room with you.  Plus to be able to cry and be honest with people you have only know 4 months and burden them with your stuff knowing they have their own busy lives.

Yeah so that’s life right now.   Perhaps I am going to hit the publish button and regret my honest moments or people will judge me as being ungrateful or like I am complaining.  I don’t mean to complain it is about getting it out and being honest.

How’s Aria?  Her heart rate is pretty good, the best it has been in a long time in the 120s.  She appears to have finally come thru her unsettled period and seems ‘happier’ today!  Thank goodness cause we have really been feeling for her and her struggles.

The last few days have been pretty rough for Aria. She has been pretty distressed and upset at times with her circumstances and the medications she has been on to keep her calm and relaxed have been losing some effectiveness. In response to this, a decision was made this morning to change her medication to one that would keep her nice and relaxed, let her body recover from the previous medicines and give her a chance to wake up refreshed once the course of treatment was complete.

Aria had other ideas.

Aria spent most of the day displaying her extraordinary will power to stave off the sleep that the doctors were trying to give her. She has finally succumbed to what will hopefully be a nice restful sleep.

It has been really hard seeing Aria appearing unhappy and agitated, as a parent you always want to see your children at peace. However when there is only so much you can do, it really breaks your heart.

Please pray that this little break in routine for Aria might have the desired effect and that we all can start a new day with refreshed minds and hearts.

Nothing much new to report on the Aria front.  She is a bit more settled today thankfully.  Yesterday she was having a hard time with the tube and just being unhappy about it.  We tried sitting her up in bed and in her pram but boy did she fight it!  She is strong thats for sure.  She kept throwing her weight back and eventually would slide down.  It was pretty distressing for her and us but in someways it was good to see her fight so much.  They want her sitting up more but Aria is not a fan.

We have some interesting mail today.  Nothing is more cool than getting mail from real people not bills and stuff.

Firstly we received some books from a TNN friend of mine who has a heart for Aria.  One of the books was one we used to read Aria even night during the last stay at Starship.  The book belonged to the hospital and we never got a chance to get to the shops to buy it.  I had remembered it since being here and wished we had it because it would always put her to sleep.  And now we have it along with other books we remembered from NZ.

Finally we got a letter from MOTAT.   I know- how random!  It was a letter saying that they had come across Aria’s website, I am assuming from google alerts from this post.  Anyway the letter said that they felt for us and Aria’s tough journey and they would like to offer us a free one year family pass when we return to NZ!!!!  How super cool is that???  We were so super touched that they would think of us being all the way over here.  And of course Aria will have one or two appointments at Starship when she gets back 😉 so that will something fun to do after.

Anyway – still prayers needed very much.  Thank you for your love and support.

So Aria is re-intubated.  Disappointing but overall the message is positive that she worked really hard and gave it a good go.  The biggest thing holding her back is that she isn’t strong enough to cough.  And it could also be painful for her because of her wound.  Hard to explain to a 3 year old to push thru the pain and cough anyway.  Humans are hardwired to stop when something hurts.  I remember reading that pain is a gift from God to protect us against further harm.  But in this case Aria just needs to get stronger and we will try again next week.

The hardest things has been seeing her disappointment at the tube being back in and trying to explain to her why she needs it.  Please pray for her peace.

Her temps seem to have settled a bit but her heart is still racing.

There is a lot going on right now.  Things are tough, really tough.  I woke this morning with a big headache and an anxious heart.   My dear friend Laura gave me a coffee mug that I brought from NZ with us.  It is big and holds lots of coffee.  BUT the best thing about it is this verse :

“For I can do everything through Christ who gives me strength”  Phil 4:13

Yes- EVERYTHING.  Even the very very hardest thing that anyone could think up or imagine- We can do it!  In the past hour I have really felt a supernatural peace come over me that I can’t explain because my circumstance tell me to stress and worry.  Praise God.

Our girl is amazing.  She is a fighter thru and thru!  So is our boy too for that matter.  Love them both

So I have wanted to do this for a long time and today I am going to try.  Try- forgive me if we get to busy and don’t manage.

7.30am.  I arrive in Aria’s PICU room and notice her heart rate is in the 130s (better!) and she is sleeping.  Temps have been normal over night.  All her pumps are off but insulin and TPN.  Yay this means sedation is off ready for extubation!  The nurse said Aria got a bit distressed at 2am and kept pointing to the breathing tube in her mouth.  Oops that might be my fault cause I told her today she was hopefully getting it out.  The nurse told her at 2am she would get it out when the sun came up.  So whenever Aria stirred she opened her eyes and turned her head to see out the window.  Funny girl 🙂 Obviously checking the progress of the sun.

8.30am Aria is awake and watching Barney.  She seems pretty settled and able to focus and answer questions by nodding or shaking her head.  She has had two people examine her which she clearly didn’t enjoy.  Can you imagine someone coming in your room as soon as you wake up and shine a light in your eyes to check your pupils and listen to your chest?  Aria likes the blankets way up around her chin now and likes her toes aways covered.  Just waiting for a Doc to show up to supervise pulling of tube.  Nurse tells me Aria’s HB is low so she is having blood today and they have changed her TPN- must remember to ask why at rounds this morning.

10am What a busy morning.  The wound nurse came in for a consult and then came back with all their goodies for Aria’s wound.  The goal is to get it to close but still allow to drain.  Long story short and lots of cutting of various materials Aria has a wound vac on.   We haven’t described Aria’s wound much cause we don’t want to gross you all out.  But it is about 25cm long and about 3-4 cms deep and open.  So the wound vac is basically foam and a seal and a tube to suck out the yuck and create suction to get the wound to close.  Apparently if they work they are awesome at healing wounds.   Aria did awesome has she had two nurse buzzing over her for ages.  She had one arm around green dolly and one hand on her chest holding my finger.

Interestingly one of the nurses had been to Auckland Hospital twice to teach this exact thing.  Small world.  Thinking some breakfast and a shower would be nice right now but still have rounds and still waiting for the Doc to show so we can pull the breathing tube.

The infectious diseases nurse came in just as the wound nurses were leaving and examined Aria.  The consensus being the skin infection is a touch worst but the white cell is unchanged so that is good.

11.15am THE TUBE IS OUT!  Praying hard for ‘durable extubation’  That means it comes out and stays out.  Nothing major to report on rounds except a push to start Omegaven, which is the liver friendly lipid.  TPN ruined Aria’s original liver and because feeds are still weeks away and the liver numbers aren’t flash then this is an option.  But frustratingly Aria has been on Omegeven at home since 9 months old but here it is not approved by the FDA for use so you have to do clever paperwork.

Hamish is back from dropping Asher off at daycare and he is with her while I grab a shower.  He brought me some fruit salad for breakfast.  Yummy.

12.45pm Aria is doing great.  Her O2 stats are 100% and her gases came back good.  She is breathing pretty heavily but it isn’t laboured like last time.  She was resting and watching the Wiggles.  We are going to work with her to get her to blow out by blowing bubbles etc.  She is resting now.

1.50pm A nurse pops her head in the door and says to Hamish ‘How do you say your name, we are having a debate in the nurses station about how to pronounce your name’  We laugh and say HEY-mish.  ‘Ok so none of us were saying it right’  So funny.  Hamish isn’t a common name in the US so most Americans say Harmish or Ham(like the cold meat)mish.

2.00pm Filming of Aria for doco and interview of me and Hamish.  This has been put off a number of times so it is good to finally get it done.

3.15pm Filming is done.  They wanted some shots of our hospital hotel room so Hamish had to sprint back and do a quick tidy.  Three people including a two year in a small space doesn’t make for tidiness!

Aria is doing ok off the vent.  Her blood gas came back a little high.  There is a little too much C02 in her blood so she isn’t breathing it out effectively.  They are trying breathing treatments on her where they hold a mask to her face which she doesn’t love.

But we have heard some little noises from her.  Her voice won’t come back for a few days but little sounds mean that hopefully there is no damage to the vocal cords.

OK well the day in the life of has come to an abrupt end.  Aria is being intubated.  Bummer- still she did better.  We need to rest now.