2010 June - Aria MacDonald

You read that right, Aria’s big achievement for today was spending about 7hrs breathing humidified room air!!

Our nurse today was keen to ween her oxygen and despite my reservations I agreed we’d give it a crack and she absolutely blew my expectations away. She didn’t maintain 100% saturation, but she was well above the 92% acceptable minimum the whole time, well except when she got made at me for not putting her quite right in bed and decided she would tell me off and not breathe, funny girl.

The other big news for today is that when the Kidney Dr came in today she gave me the definite impression that her interest in Aria was over and that the only time she might say “Hi” to Aria anymore is when Aria is prowling the corridors on her walks and we happen to bump into her. Our nurse today hadn’t heard that story so while I’m confident we are out of those woods for the moment, we will be eagerly looking for confirmation of this tomorrow morning. The reason for this is that Aria’s urine output is going up, up, up and her kidney numbers are coming down, down, down.

Oh and I almost forgot she is getting a 2 hour window from her feeds so even more freedom!! Wow, things are flying along.

And just because I am jealous of all Anita’s cool Photo posts, here are a few photos of the last couple of days.

Aria in her walker!

Aria in a thoughtful moment, maybe preparing to write her memoirs.

Aria’s hands, you can see how her colour is changing with time.

Aria on room air, at this point she only had one cord attached to her, her wound vac.

Today had a few highlights.

The first and probably most significant one was that Aria got moving under her own power today, well sort of. The Physical therapist has a walker that Aria got into for the first time today and much to our surprise she took off like a startled rabbit. Now the walker supports most of her weight and I was giving a bit of guidance and a little ooomph here and there but she was churning those legs and propelling herself along pretty well. She managed to get from insider her room to the front desk of PICU, about 25m or so. While that in itself is not a huge way, for a girl that hasn’t really used her legs for about 6 months it is MASSIVE. This will hopefully be the start of big things for Miss Aria and her legs.

The second highlight was the ongoing education and preparation we are undertaking to be able to care for Aria at home. We met with one of the transplant coordinators twice today to discuss what we would be doing at home with Aria, it was really helpful to get a better understanding of what things would be like. The other big move forward in our preparation was changing Aria’s tracheotomy appliance for the first time. It was a little bit weird to do but quite straightforward. This also meant that I was able to take Aria for a walk by myself for the first time since her first transplant. YAY!!

The last highlight is her continued avoidance of dialysis and slowly climbing urine outputs. Keep praying for this area particularly, it is a huge part of where we are at with getting her out of hospital.

Thanks again for your prayers, we have seen how it has changed Aria’s life dramatically the last couple of weeks.

I have sitting next to me a copy of the Pediatric Discharge Handbook, finally read it cover to cover.  Had to chuckle when going thru the pamphlets and one was called Pregnancy and Parenthood after Transplant.  Ummmmmm perhaps Aria is a bit young for that one!

Today the team was finally willing to put a time frame on getting home.  2-4 weeks is the plan.  That is completely perfect because Hamish’s parents will be here during that time and we could use a hand.  Still we aren’t getting our hopes pinned on anything just yet.  There are four things holding Aria back;

1.  The kidneys

2.  The vent

3.  The wound

4.  Walking

She needs to be off the vent, dialysis sessions max 2 times a week.  The wound needs to be able to be managed by Hamish and I and dressing changes once a day max.  AND they want her walking a few steps.  Honestly if the first three things are in order then there is no way she is staying in hospital cause she isn’t walking but we would like her stronger.

Aria had another day without dialysis.  She peed twice as much on Sunday as she did on Sat.  Still isn’t much but improvement.  Her kidney numbers aren’t flash but they aren’t terrible.  They gave her a dose of lasix to make her pee and she did response so that is great.

We also got some referral papers for Make a Wish today.  How exciting to be at that point!  There is confusion as to whether we are eligible for a wish in the US or we have to have one at home.  I hope Aria can do it here!  Of course we aren’t actually sure what she would wish for, Disneyland seems like the obvious choice- I think she would love it.  But I don’t want to put words (or wishes) in her mouth!

Finally we met some Texan friends yesterday for the first time which was really nice.  Their oldest son thankfully avoided bowel transplant, God has done an amazing work in his life and body.  Lori and I have been in contact for over a year now and she put me in touch with Carol and Cordell before we arrived.  Finally we met and hung at the Bullis house on Sunday arvo.  They kindly hosted (and fed) both our families!  I remarked to Lori when we were finally sitting down that I was tired of being a single parent.  She got it and I knew she would.  It felt good to talk with someone who got it and got thru it and is still getting thru it.

Tomorrow is a crazy busy day- lots of appointments and training to take care of Aria at home.  Exciting!

Today Aria had another good day, she spent the day on the trach collar and did better than yesterday.

The highlight of my day however was just after her bath time when I got some good old fashioned Daddy cuddles. After her bath her bed is wet and needs changing. I offered her various options of how we could achieve this. I offered snuggles in the big seat, her wheelchair, rolling over in her bed or daddy cuddles. She elected to have daddy cuddles. So I picked her up and held her the same as I would hold Asher if I was holding him, a first since before transplant. As we stood there having some nice daddy/daughter time she gave me some kisses and nibbled on my chin. Definitely one of the nicest moments I’ve had for a long time.

Prayer points for the moment would be that we can get her onto her speaking valve for the trach, we can get her onto room air for her breathing, that temps stay away and she does lots and lots and lots of urine while she is not being dialysed.

This morning got off to a bumpy start.  I arrived and Aria was on the vent and her o2 stats were at 97 and she was breathing heavily.  Perfectly ok of course but not ok for Aria.  She is always always at 100.  How could she be off the vent all day yesterday and sitting at 100 and then be on the vent today and be worse.  Was she brewing something?  Last time we saw this she tanked a month ago.

After some fiddling and decisions they changed her trach out and turns out it had a bunch of junk in it.  Phew, it was blocking her airway.  Still the rest of the day she keep at 100 but was breathing a little heavy and at 7pm we put her back on the vent and she perked right up.  Perhaps she is also a little tired from the huge progress she had been making.

No dialysis today or tomorrow!  Yay great news.  Praying hard for pee tonight.

The surgeon who did her first transplant was on this weekend and wasn’t on rounds this morning.  He came to visit later in the arvo and was ‘WOW look how great she looks’  Aria was sitting up on her bed watching the computer.  When he saw her last she was about 5kgs heavier from fluid.  ‘Totally worth it’ he said to me.  I couldn’t agree more, even twice over.

Today we had lots of visitors which was super nice.  Bridget from music therapy came.  Carol and Cordell came walking with us which was just great.  Angie, Cury and Praja visited to and brought Aria some more bday presents!  Praja is 4 like Aria and I was interested to see how Aria would be with someone her own age.  She was a little shy at first and take awhile to warm up.  But both girls seemed to enjoy the same games, cupcake making and dolly dressing.  Praja’s older brother was very patient.  Actually Praja was a perfect first little visitor for Aria, sensitive enough to be aware of Aria’s situation but brought this lovely vibrant energy which didn’t overwhelm Aria but gently pushed her out of her comfort zone.  By the end Aria was waving and blowing kisses goodbye (unprompted by me).  Interestingly Aria gets sad whenever visitors leave lately, todays three departures were met with sad faces.  Still this is positive because it means she is wanted to interact with more people than just mum and dad.

Praja commented on Aria’s hands which was quite interesting and reminded me I wanted to post about it.  Maybe you have noticed in the pics that Aria is still looking kinda dark.  No she doesn’t sneak off to sunbeds at night. It is very weird because it is like she is stained (all her liver numbers are perfect).  All that toxins from her liver have built up in her skin over time and are finally making their way to the surface.  Her hands used to be black around the knuckles before transplant and where they have been plasters (bandaids) pulled off taking the skin with them there is white/pink soft skin underneath.  I kinda want to scrub her with pumice, but I won’t of course!

Thanks for checking in on us!

Last night Aria was OVER-ventilated on the vent (not a  big deal).  Her progress is faster than the team can keep up with 🙂  So she will be on the 02 for 12 hours during the day and sprinting during the night.  AWESOME

Actually while it is great news the vent is on the only thing keeping us in the PICU.  Leaving the PICU, after spending 7 months there and only there (apart from 2 days on the general ward) it kinda tough.

Aria is having dialysis today.  This is probably the thing keeping Aria in the hospital full stop, that and her wound perhaps.

There is a plan to get Aria a speaking valve for her trach today.  We might be able to hear her voice for the first time in months today!

Lots to praise God for and lots to bring before Him 🙂

The past couple of days have been very very encouraging for our little family.  It is like the clouds are finally FINALLY starting to lift.  It feels good.

Today Hamish and I did half days each.  I did the morning and I had a great time with Aria.  Her room is packed full of new toys even I want to play with 🙂 Today she did ‘feet resting’ for 12 minutes.  She is lying on her bed but it is tilted down at such a level than she has to weight bare on her legs.  Great progress.  Of course there was the news of the pee and great progress on the vent.

Getting home is looking more and more promising.  There is a long way to go but it is looking good.  Omaha Childrens Museum is having a Carefree Kids night on the 16th of August- we might even actually make it with Aria and Asher.  They would have an AWESOME time.

In the afternoon Asher and I went with some friends to a sprinkler park.  Are kiwis familiar with these?  I wasn’t so by way of explanation it is like a local neighbourhood park but instead of swing and slides you have all these different things that shoot water out at different times.  Like a rainbow you run under and jets that come up from the ground.  Very cool. Actually it is an awesome idea for those Aussies cause it is stinkin hot there too but those poor people never seem to have water!

What surprised me was my response when Andrea emailed me to invite us.  I was like ‘Yes please we would LOVE to come’  For the first time pretty much since we have gotten here I feel good to socialise and talk with people without being scared of crying or having to think of creative ways to say that Aria is really sick but actually fine.   Thank you to all our Omaha friends for loving us and reaching out to us even when we were terrible company!

Did you know today I lifted Aria out of bed and into her seat without help!  First time ever in months that I didn’t need help to pick up my own child.  I can’t tell you want an awesome feeling and privilege that is.

Today is another good day.

Guess what?

ARIA PEED and there is NO dialysis today- why ?  Cause she doesn’t need it.  Yesterday was a break because of her birthday and we asked for it knowing that things would go wonky (her labs- electrolytes and kidney numbers)  But overnight they didn’t and she peed out 46mls of wee/pee and another 20mls now.

We will probably have it tomorrow but thats ok- Aria is moving in the right direction.

Aria is currently trialing 2 hours three times a day on no vent but 26% 02.  You and I breath room air which is 21%.  We tried capping off her trach and she didn’t do awful but still needs a bit more time.  Her o2 stats dropped to low 90s.  But on the 26% she sits nicely at 100- perfect.

Do you know a month ago they were buzzing around with an oscillator!!!!  Aria was paralyzed and on full serious vent support- now they are trying her on room air- breathing by herself?  This is HUGE.

I told our nurse today she was the good news fairy when she updated me.  Nothing magically about this though- GOD IS GOOD.

PHOTOS ON FACEBOOK

Thought I might try a day in the life blog for her Birthday celebrations, as you know we delayed them till she was feeling a bit better and thankfully she is doing MUCH better than even two weeks ago.

8.30am I arrive to hospital to find Aria awake and playing with the Occupational Therapist. She was still a bit tired and wasn’t really going for it. She’s happy to see me though and that is nice. OT leaves and two minutes later the people for her morning XRAY turn up. Off to a rip roaring start. Aria knows its her birthday today and is happy to be 4!. As for me I have done the normal run down of various stats with the nurse on today, things are ok so that is good.

9am Our fabulous nurse arranges to put off one of Aria’s regular cares for today to give her a more relaxed day, its nice they care and want to make her day special. I suggest to Aria that she takes a nap so she is full of energy when Mummy and Asher get here, she screws her eyes closed and pretends/tries to sleep. Super Cute!

10am So far we have seen OT, PT, RT, ID and the liver Dr plus the regular nursing staff of PICU and a handful or students in tow… just a typical morning for Aria. Big news so far is that we are going to look into getting some formula for Aria to drink instead of water and she is sprinting all day with her being off the vent 3 times. She is also on her Antibiotics for another 9 days so that might mean the kidneys won’t kick in during that period….. we’ll wait and see on that front though.

10.15am Its the Intensivists (PICU Dr) turn to visit, he talks about Aria being on her trach cuff (off the vent) all day by the end of the week and only on the vent at night….. WOW!

10.30am Asher and Mummy arrive, Aria is very excited and sends me down to help them bring up the presents. Things get noisy now with Asher in the house, it is happy noise though. Blue Dolly is in for a visit too, Aria insists that Green Dolly gives Blue Dolly a kiss since they have been apart for quite a while. We tell Aria that Blue has been looking after Asher for her.

11.00am Rounds been and gone without anything of note so its PARTY TIME!!! Cake, decorations, presents, about 20 staff singing happy birthday and playing instruments. Present time now.

12.30pm Celebrations have come to a pause. Asher is sitting down saying “Chikka Chikka Boom Boom” from a new book Aria got. Aria is surrounded by some dolly friends. I think the biggest hit of the day was a real working oven from her friends on the staff at the University of Nebraska Medical Centre. We still have lots of other events to look forward to today….. Oh and her hour off the vent with low flow oxygen support went well.

1pm Lunch time for everyone, Pizza and Santa Fe stromboli. The surgeon stops past to eat some cake, everything steady as she goes. Bridget the music therapist comes back for some music time. Aria is keen to try out the new bells she got today for a present. Nana has skyped from NZ to say hello too, the kids are happy to see her.

2pm Aria is tiring but her and Asher are doing preschool together after getting some respiratory treatment. Physical Therapy comes back and we tell them not today thank you. Asher and Aria are enjoying doing Elmo puzzles together.

3pm Another skype this time with the Cousins, Asher and Aria both love to see them and there is happy chaos on both ends of the connection. After this Aria settles in to watch the Music Therapy Promo DVD that was made starring our family amongst others. Asher watches Dora on another DVD player, the wonders of modern technology.

6.30pm For a good past of the last few hours we have been off walking with Aria and no vent. That is right we had her with an oxygen tank which made things much easier. We went tunnel walking, outside and to the cafe for a bit of sit down dinner. We’ve also had some visitors including our little friend Emerson who is has had two transplants just like Aria. Aria is still chugging along, overcoming her tiredness to keep on playing.

8pm Asher and Anita have left to get Asher to bed. He has done really well to last the day. They went to the launch of the Music Therapy DVD for a bit, it was a fundraiser full of flash people, Asher obviously fitted in perfectly (or not). Aria finally succumbs to sleep letting me get home the earliest I have in a good while. She did really well today, she has extraordinary reserves of energy that girl. I think she had a great day, as did we all.

We are really thankful for the last 4 years of Aria’s life, we are really thankful for how quickly Aria has made gains with her breathing and we are thankful for you all sharing this journey with us.

And yes, there will be photos of the day too at some point…..

Yesterday I was a bit lazy and just put up some photos.  It was a long day in hospital with Aria.  Actually the days are good but they are kinda draining.

Weekends in the hospital are quite nice.  They are quieter and there is less people around.  So Hamish brought in Asher for the afternoon and they stayed about 6 hours.  Asher was so well behaved, even managed to sit on Aria’s bed with her when dialysis was going.  It was a lot of fun.  I think Aria really enjoyed herself.

Today I was home with Asher so we skyped a couple of times.  I cooked dinner and Aria watched and we chatted about what I was doing.  Then Asher and I played trains and Aria watched again.  She really seemed happy.  Personally I think it would be pretty boring but hey whatever works.

Medically things are going very well too.  The ICU doctor today said they are going to trial off the vent for 15mins at a time by the end of the week.  YAY- this means Aria will be able to talk.  Funny though because exactly a week ago I was being cheeky even suggesting to them that Aria could be on sprints by the end of that week.  Well she was sprinting by wednesday last week and today they increased it to 2 hours three times a day.

Finally it appears though her daily fever has broken.  Every morning she would spike to 39ish and her HR would jump to 150s.  You could set your watch to it.  Yesterday morning and today no spike and her WBC is down.  Thankfully we might of seen the tail end of that nasty multi drug resistant Pseudomonas.  Maybe not- but please Aria someday soon Aria’s blood, lungs and body would be sterile and NO BUGS!

Dialysis continues unfortunately.  We have been promised a break on Wednesday to celebrate Aria’s birthday.  It is all planned, well as much planning that needs to be done with a hospital birthday.  There is a big pile of presents to take in and there is talk of Elmo visiting!

Better go Hamish is finally home.  Got a couple of amusingly concerned emails- don’t worry we won’t actually be eating pizza for weeks.  Although we both had some for lunch and there is still a giant piece left!