News - Aria MacDonald

Aria has been home 24 hours and things are going pretty good.

Last night was pretty tough, I think Asher as a newborn was less work.  Not much sleeping happening for either of us.  Aria found it hard to settle and kept pulling off her toe prob off to get our attention thus making the machine alarm.  We have rearranged the kids bedroom today and made some other changes so fingers crossed that helps.

Asher is very pleased to have Aria home but I think a bit confused and therefore uncharacteristically whingey.  It is a touch trying on our patience because we aren’t used to him being like this.

We sat Aria and Ashie down for some preschool time and she sat really well at the table and did some worksheets

The two biggest wins for the day would be firstly getting her to wear her speaking valve.  We have only managed to keep it on her for 2 mins at a time but we managed to convince her of the need to have her voice (after she pulled off her tummy dressings to get our attention).  So she has been wearing the valve for a good couple of hours now and seems to be used to it.  We have been able to hear her voice and she is using more of her words.

Secondly her urine output seems to of increased heaps.  I had to change her nappy/diaper in the middle of the night and this morning there was another very full one.  Her ankles and legs seem lots less puffy and softer to the touch.  Of course we aren’t weighing her nappies like in hospital but we ‘know’ her output pretty well from feel and can tell it has improved.

Hamish and I have found the whole thing rather stressful to be honest.  The house was a complete tip with all the consumables and equipment needed.  SO thankful for God’s timing in having Christine here.  She has tidied and organised all the stuff we brought home from hospital (a lot) and helped with the kids room.  Very grateful for her servant heart.  Not sure how we would of managed to be honest without them being here.

Thanks for all the lovely comments, we really appreciate the support.

Psalm 30: 2-3

O LORD my God, I called to you for help
and you healed Aria.

O LORD, you brought her up from the grave
you spared me from going down into the pit.

Psalm 30:11-12

You turned my mourning into dancing;
you removed my sackcloth and clothed me with joy,

that my heart may sing to you and not be silent.
O LORD my God, I will give you thanks forever.

Aria is still on track for discharge tomorrow!  We have less than 24 hours to go.  SO EXCITED

There is lots of work being done and none of it is being done by me.  Operation Home is being managed by a team of people and they assure me they are all sorted.  In fact I don’t even have to tell them what time we will be home with Aria, they are ready and waiting for our call that we are home bound and will meet us there.  AND tomorrow we clean out the room of everything- EVERYTHING.  Anything that isn’t nailed down we are taking.  Ok not quite that- but if it has been billed to Aria’s account and we can use it at home it is coming.

We did a car seat test on Aria today. Normally this is done on little premmie babies to check they can manage carseats rides without comprising their breathing.   Baby capsules bend babies in the middle (rather then laying them flat) which is why carseats should stay in the car!   Even though Aria can sit upright we want to get her belted in and make sure she wouldn’t get uncomfortable and slump down- she did great!

Hamish is rooming in with her tonight and doing all her cares- just like at home.  Hopefully they will both get some sleep.

Hopefully the next post will be to announce Aria’s home coming!

Sorry Aria fans for the lack of updates!

Hamish and I ended up heading away for TWO nights to Nebraska City.  Or Nebraska ‘City’ as we have been joking- kinda like a small version of Cambridge, beautiful.  We stayed in a beautiful lodge funnily enough called The Lied ha ha.  We had a GREAT time, it was hard to come back which it hard to say because we missed the kids.  But it was hard to come back and back into the reality of hospital life.

Aria’s time was uneventful and boring so the surgeon on told us.  Some fine tuning of her labs and general condition.  She is having an allergic reaction to something, lasix was the theory.  Not to be confused with Latex although that is also off the list because PICU is latex free (thanks Viv!)  So they have changed her feeds.  Poor girl is still itchy and rashy but in general ok.

The plan is to have her home Thursday morning.  Tomorrow is going to be flat out with training with the home health service who do everything o2, feeds, dressings, pumps, the works.  We need to be trained on the o2 machine, suction, pulse ox etc etc  Although to be honest all the organising has been done for us, I haven’t written a list or done a single thing.  I have been told it is all sorted and I don’t need to worry.  I hope they are right!

Thank you to Nana and Poppa, Carol and Cordell whose time and effort made it possible and E&J whose generous gift made it possible.  Thank you- it takes a village to raise a child and enrich a family.

Aria hit an Omaha pothole last night.  Actually at the time we thought it was a pothole, turns out it may be more like a filled in pothole.

Got a call from PICU at 2am saying that she had had an episode of gasping for breath, turning blue and her stats down to 47%- EEK!  What!?  Was our groggy response.  She had been doing so well and we were so surprised.  I couldn’t sleep and needed to see her so went in to talk to the staff and understand what happened.  Her trach wasn’t blocked or anything.  The o2 had come off (most likely she pulled it off) and for whatever reason she did not hold her own on room air.  Strange given she was doing great on room air the pass couple of days.

Chest xray was done stat and it looked exactly the same as normal.  The team just thinks she is tired and we need to expand her lungs more.  The speaking valve will help a lot with that but she hates it.  It redirects the air flow within her lungs and while you and I do that all the time when we talk Aria hasn’t experienced that for months.

So our home plans have been pushed out a couple of days.  New surgeon on this week and she is fine with Aria going home but said more like Wed or Thurs.  That’s ok.  We want to be comfortable Aria is doing pretty well because we don’t want episodes like that at home.  The breathing is the only thing keeping Aria in hospital.  Her labs/bloods look great and today they changed blood draws to Mon, Wed, Friday instead of every day!  Also important for going home.  AND Aria doesn’t have to get sticked everyday too poor kid.

Hamish and I are going away for the night tomorrow.  The surgeon suggested we go two days but not sure if we can manage that.  The team promised to call if there was any reason to come back but I think we couldn’t stay away that long.  Nice of them to care though.

Isn’t that amazing- after also 8 months living separately they still love each other.  Mind you, they only spend a few hours together but some competition and sharing will do them both good.

Bob and Christine arrived safe and sound after long travels and a bit of a delay due to bad weather.  Both kids were pretty shy but warmed up quickly.

The big news of the day is that the medical team have tentatively labelled Tuesday as the day Aria can be discharged home.

Yes, you did read that right, home, H-O-M-E.

Of course there is always the potential for the unexpected with Aria, but we are praying very hard (and would like you to as well) that things would continue to improve and go smoothly so that can be a reality.

Aria seemed to be more comfortable today now they stopped the medication they think she has developed an allergy to, hopefully that continues and she will be a happy little camper till Tuesday.

Our mood could be described as cautiously jubilant.

Tomorrow Aria has a procedure (scope of her her upper airway) that requires a leur to be put in for IV sedation. Hamish and I are really hoping to go away Sunday night for 24 hours before Aria is discharged. We are really hoping they are able to get a line in without drama or else it will have to wait until Monday and the ‘holiday’ will be off.

Oh and Aria’s Nana and Poppa arrive here tonight, should be a great couple of weeks.

Aria did her first night off the vent  That’s great but how to interpret that? Did she do super awesome or did she just make it thru.

Aria has had a nasty rash for almost a week now.  First we thought it was a reaction to the ABX she was on so they stopped it.  But it hasn’t improved infact today it is worse.  Poor Sweeties is itchy and grumpy.  Her skin is dry and red and sore looking.  Her WBC is climbing each day.  Her HR is high too.  She has been having low grade fever 38.3 max.

Current theory is that she is allergic to lasix/furosemide, it is a drug that helps her pee.  They switched from an IV dose to oral twice a day.  SO that would explain the rash, temp, HR and WBC.

Add that to the fact we are weening her on her sedation drugs still meaning she might be having drug withdrawal too which would explain some things like the grumpiness and high HR.

So back to the original question of how did she do off the vent.  It is hard to tell what is tiredness and what is related the other stuff she has going on.  Time will tell!

I did promise photos but I have to clean the house to get it ready for the In-Laws arriving tomorrow!  BBL

There is what six months of receipts look like.  Are you thinking- we would much rather see a photo of Aria.  I agree.  But I do have a point.

We have the privilege of having Aria’s fundraising money in a Trust account with the KIDS foundation.  The privilege of them having the responsibility of managing and receipting that account.  The privilege of telling people who donate money to Aria it is safe and well and they can have a receipt for tax purposes.  The KIDS foundation is a registered charity and once a year they have an independent audit of their accounts and as Aria’s trust fund naturally falls into that audit.  Hamish and I have the responsibility to keep receipts to account for all the fundraising money we use to have to privilege of being together here as a family in the US.  We have kept all the receipts but given the events of the past six months we have been less than great at organising them!  But here they are in month and date order- now for the fun job and ticking them off with the bank statement!  Thank you KIDS Foundation and thank you to all the lovely people and companies that have donated to Aria.

Now to Aria-

She failed to fly overnight off the vent.  She still needs that vent for at least 6-8 hours a night.  That is ok.  She is making progress every day.  The vent settings she is on are very minimal.  The vent is set at 21% O2 (normal room air) and CPAP pressure support.  So it kinda pushes air into her lungs as she takes a breath.  Naturally we are really disappointed but it is ok because her kidneys aren’t quite perfect enough to go home with anyway.  The Gastro Doc joked to us yesterday that Aria’s gut could of gone home weeks ago!  We laughed cause he is right-it was the intestine that rejected first up last transplant is doing awesome- not a hint of trouble.  Which is fine cause that is the make or break one and the reason we came to Omaha

Hamish and I are doing most of Aria’s cares now.  The PICU nurses have been very generous teachers which is lovely considering that isn’t really their job as such.  Teaching is mainly done on the ward.  Aria loves having mummy and daddy do her cares and she is an excellent helper.  I was teaching Hamish how to do her wound dressing yesterday and she was busy poking herself with a Q Tip- so funny.  She has a bit of thrush in her mouth so we have had to give her meds directly into her mouth so we encourage her that she is helping us.  It is a sales pitch that works too!  Honestly she is such a good girl and really embracing her life rather than fighting it (most of the time!)

Unfortunately I have let my guard down in regards to getting Aria home.  I let my mind start to dream and hope.  For almost 8 months now, since before we left NZ, we only plan life in 24 hour increments.  Sadly I am at the point where I get anxious if I have to plan ahead even a day or longer.  Simply because I can’t and it really hurts.  I wish we were normal and living at home as a family.  Asher cries now every time we leave the hospital.  He loves hanging out with Aria now she isn’t a blob in a bed, which she has been for so long.  Breaks my heart every time.  So I need to get back to ‘coping’ and ‘taking it one step at a time’ which I hate cause what choice do I have.  Hamish’s parent’s arrive on Thursday and for some reason knowing help is on the way makes the next 3 days seem like a lifetime!  It will be fab to have them here and the kids are really excited (as are we!)

I have some really fun pics of the kids to post tomorrow.

THANK YOU for reading Aria’s blog.  It is a privilege that you do and we don’t take it for granted.

Ummmm so it appears tonight Aria is going to go without the vent.  Or at least try her without the vent and she how she does.  Ok then.   I think she will do fine, she is still on 26% O2 so that makes me happy.  Today when we were in the room I hooked her up to the o2 and she is much more settled and the day was much more pleasant.

Really it is a bit scary because the vent is the only thing keeping us in the PICU.  Still we are really hoping discharge is a week away (pending a success night off the vent) and they might be compassionate and let us stay.  We have spent 7 long hard months there.  We know the staff and Aria is comfortable there.  Would be hard to unsettle her with a new environment on the ward and then another one at home.

One of our fave PICU nurses left today for another job in the hospital.  Interesting thing about Aria when she could talk (before 1st transplant) she would refer to certain people or things as My.  My daddy, My Nana, My Dolly and My Nurse.  Only those people would get a My infront of them.  If Hamish or I had to go to the toilet then she would say ‘get my nurse then’ and she would only refer to certain nurses as My Nurse.   Cute.  This particular nurse we will miss a lot.  She was there new years morning at 3am when Aria was on the vent (and I couldn’t sleep).  Fast forward to the day of Aria’s second transplant and she was there that morning too.  And all the tough days in-between those events that are now blurred.  We are SO thankful for that and all the other nurses that have done hard days with us!

So Aria might be home in a week.  Hamish’s bumped into one of the ICU docs in target today (Omaha is a small town).  He preached caution when Hamish’s mentioned Aria should be home in a week.  He is right, it might not be that straight forward.  Please pray Aria might get home, there is some fine tuning to do (and lots to organise!)  But God can do it!