A day in the life of Aria MacDonald
So I have wanted to do this for a long time and today I am going to try. Â Try- forgive me if we get to busy and don’t manage.
7.30am. Â I arrive in Aria’s PICU room and notice her heart rate is in the 130s (better!) and she is sleeping. Â Temps have been normal over night. Â All her pumps are off but insulin and TPN. Â Yay this means sedation is off ready for extubation! Â The nurse said Aria got a bit distressed at 2am and kept pointing to the breathing tube in her mouth. Â Oops that might be my fault cause I told her today she was hopefully getting it out. Â The nurse told her at 2am she would get it out when the sun came up. Â So whenever Aria stirred she opened her eyes and turned her head to see out the window. Â Funny girl 🙂 Obviously checking the progress of the sun.
8.30am Aria is awake and watching Barney. Â She seems pretty settled and able to focus and answer questions by nodding or shaking her head. Â She has had two people examine her which she clearly didn’t enjoy. Â 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? Â Aria likes the blankets way up around her chin now and likes her toes aways covered. Â Just waiting for a Doc to show up to supervise pulling of tube. Â 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. Â The wound nurse came in for a consult and then came back with all their goodies for Aria’s wound. Â The goal is to get it to close but still allow to drain. Â Long story short and lots of cutting of various materials Aria has a wound vac on. Â We haven’t described Aria’s wound much cause we don’t want to gross you all out. Â But it is about 25cm long and about 3-4 cms deep and open. Â 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. Â Apparently if they work they are awesome at healing wounds. Â Aria did awesome has she had two nurse buzzing over her for ages. Â 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. Â Small world. Â 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. Â 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! Â Praying hard for ‘durable extubation’ Â That means it comes out and stays out. Â Nothing major to report on rounds except a push to start Omegaven, which is the liver friendly lipid. Â 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. Â 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. Â He brought me some fruit salad for breakfast. Â Yummy.
12.45pm Aria is doing great. Â Her O2 stats are 100% and her gases came back good. Â She is breathing pretty heavily but it isn’t laboured like last time. Â She was resting and watching the Wiggles. Â We are going to work with her to get her to blow out by blowing bubbles etc. Â 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. Â This has been put off a number of times so it is good to finally get it done.
3.15pm Filming is done. Â They wanted some shots of our hospital hotel room so Hamish had to sprint back and do a quick tidy. Â Three people including a two year in a small space doesn’t make for tidiness!
Aria is doing ok off the vent. Â Her blood gas came back a little high. Â There is a little too much C02 in her blood so she isn’t breathing it out effectively. Â 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. Â 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. Â Aria is being intubated. Â Bummer- still she did better. Â We need to rest now.
30 Responses to “A day in the life of Aria MacDonald”
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# 16 Mar at 7:40 am
Big prayers for the extubation to go really well!
# 16 Mar at 8:46 am
Very very smart little cookie. If she’s 1/2 aware as you were at her age, Anita, she’ll know fully what’s going on, that’s for sure. I can still remember my hospital experience at age 4yo to this day, down to room layout and decorations, and grieved then because nobody told me why I was there, and why I had been cut etc. So there “awareness” of it all, what you are told, taking it all in, and relying on what the people around you say, and do, is very very much in the bloodline and genes. Poor kid! 😉 You’ve got one very brilliant and blessed child there Anita and Hamish MacDonald, and thank God she has you guys as her parents.
# 16 Mar at 9:01 am
😀 Morning!! 😀 Today will be a wonderful day! Goooooo ARIA! Yay!! 😀 God Bless you all! xoxo
# 16 Mar at 9:22 am
Can’t wait till the next episode in this tense drama! Hope the “commercial break” isn’t too long!
We are praying!
# 16 Mar at 10:08 am
Cheering you all on today! And with lots of prayers! What a gal you have and what a trooper she is!
Love you guys!
Carol
# 16 Mar at 10:14 am
My daughter, Kristabelle, had a wound vac after this last series of surgeries and it was truly amazing. I pray that is will work as well for Aria.
# 16 Mar at 10:30 am
Brill news she is a real trooper bless her, we are keeping everything we possibly can crossed here for her bless her heart xxx
# 16 Mar at 10:54 am
Great news. Praying for a sucessful day in all attempts. Peace to you both as you are with Aria in this big step.
# 16 Mar at 11:01 am
Woo hoo, the tube is out!! Great work Aria, you go girl 🙂
# 16 Mar at 11:31 am
Go Aria!!
# 16 Mar at 11:46 am
Great news, praying the rest of the days goes well, Go Aria you are such a brave strong girl, lots of love
# 16 Mar at 12:34 pm
What a wonderful post to read!!! Prayers that the tube stays out for good this time! Emerson had the wound vac – her wound was also left “open” & it did the job amazingly well. Her scar looks fabulous (all things considered :)) – hoping Aria’s little body responds just as well. I’m sure you’re thrilled to hold her again. Enjoy every minute!
# 16 Mar at 12:50 pm
Whenever I feel like I wish I could stay home and not go to work today, I read your daily update and think of how brave and strong you all are and that gets me kick started for the day! Thank you for the great news and the time you take to let us all know how things are with Princess Aria. May God bless you mightily again today! Love and prayers for you all – Jeannie
# 16 Mar at 1:41 pm
Amazing post – just reinforces how dedicated and focussed you and the medical team are, and also what an amazing wee being Aria is. Go team Aria! xx
# 16 Mar at 1:56 pm
hehe, love the pronouncations of hamish! you could adopt one as a nick name… I like harmish, could be harmish the armish. Cool about the breathing tube being out, long may it continue!
# 16 Mar at 3:04 pm
So great to read your post Anita – really can imagine being there with you guys…. and wonderful to know the breathing tube is out…. may you hear Aria asking for alcohol wipes soon! All the best for the rest of the day. Much love and prayers. X
# 16 Mar at 3:47 pm
Sounds like Aria is doing great.Thanks for the updates. Praying for a good night for all.
# 16 Mar at 4:03 pm
Wow, what a full day you have had. It is such a joy to ready that Aria is breathing on her own and doing so well. What a huge step forward that must be for her.
Again…a huge hug to you all……you are doing a fantastic job of not only being supportive to aria, and your family but to all of us who follow you daily.
# 16 Mar at 4:30 pm
Great news Anita – thank you for sharing your busy life with us all. Praying for you all as always.
# 16 Mar at 5:48 pm
Do you have any idea how awesome you guys are, Hey-mish (hee, hee) and Anita? Checking in on the Aria updates is a big part of every day, and the effort and time you put into it – when there are so many other things demanding of your time – is very appreciated – thank you:) Am THRILLED to hear about Miss A’s progress off the vent – as always – Keep going Aria!
# 16 Mar at 6:08 pm
Thank you for sharing your day with us all. I’m so sorry to hear that Aria is being intubated again, must be very hard to watch and a real roller coster of emotions on a day like today has been for you. Hope you all manage to have a restful night, thinking of you all always, Lisa D
# 16 Mar at 6:09 pm
So excited that she has had the best part of a day off the tube – and equally bummed out that she’s had to be intubated again. Lot’s of love and hugs coming your way!
# 16 Mar at 6:35 pm
It’s good to read about your day – probably its difficult for you to write it as you go but its very interesting! Yay to Aria for trying so hard off the vent today, tomorrow is another day. Don’t look ahead my friends, stay in the moment and that helps you to cope.
# 16 Mar at 7:33 pm
Thank you for your updates every day, we do so appreciate it.What a bummer that she has had to be intubated again. You said in an earlier post that a tracheotomy might be an option, has this not been mentioned again? I would have thought that this would be more comfortable for Aria even if she still couldn’t talk. Praying as always for speedy healing and patience for you both.
Judy.
# 16 Mar at 8:04 pm
🙁 so so sorry the day has ended this way… praying the time will come again that she can ex-tubate & stay that way.
# 16 Mar at 8:35 pm
another step forward and another step closer to being free of the tube. lets hope the next time aria is extubated the tube will be able to remain out. love & hugs xx
# 16 Mar at 9:30 pm
ahhh small steps – sounds like she did better this time over last time. hugs guys
# 16 Mar at 9:49 pm
My husband and I have been following your story for a wee while. I just wanted to say that you are an inspiration to us. We are thinking of you and praying for you all (and especially Aria).
# 16 Mar at 9:54 pm
Praying……
# 16 Mar at 10:35 pm
wow!!! I admire her being able to sleep in till 8 – 830 in a hospital
praying next time will be better