A bumpy start
This morning got off to a bumpy start. Â I arrived and Aria was on the vent and her o2 stats were at 97 and she was breathing heavily. Â Perfectly ok of course but not ok for Aria. Â She is always always at 100. Â How could she be off the vent all day yesterday and sitting at 100 and then be on the vent today and be worse. Â Was she brewing something? Â 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. Â Phew, it was blocking her airway. Â 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. Â Perhaps she is also a little tired from the huge progress she had been making.
No dialysis today or tomorrow! Â Yay great news. Â Praying hard for pee tonight.
The surgeon who did her first transplant was on this weekend and wasn’t on rounds this morning. Â He came to visit later in the arvo and was ‘WOW look how great she looks’ Â Aria was sitting up on her bed watching the computer. Â When he saw her last she was about 5kgs heavier from fluid. Â ‘Totally worth it’ he said to me. Â I couldn’t agree more, even twice over.
Today we had lots of visitors which was super nice. Â Bridget from music therapy came. Â Carol and Cordell came walking with us which was just great. Â Angie, Cury and Praja visited to and brought Aria some more bday presents! Â Praja is 4 like Aria and I was interested to see how Aria would be with someone her own age. Â She was a little shy at first and take awhile to warm up. Â But both girls seemed to enjoy the same games, cupcake making and dolly dressing. Â Praja’s older brother was very patient. Â 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. Â By the end Aria was waving and blowing kisses goodbye (unprompted by me). Â Interestingly Aria gets sad whenever visitors leave lately, todays three departures were met with sad faces. Â 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!
11 Responses to “A bumpy start”
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# 26 Jun at 8:26 pm
Get some rest Aria. What a busy week you have had.It is so nice you had fiends today to play with. All those new gifts must keep you busy playing.
# 26 Jun at 8:37 pm
So nice to hear Aria is enjoying having visitors. Great that her first surgeon could see such an improved Aria. And said so.
# 26 Jun at 9:14 pm
Well Aria the soccer team are on their way home but the All Blacks have had another good win.
# 26 Jun at 9:36 pm
You really do a fantastic job at keeping us up to date and in the picture. It’s a relief to have an answer to our unspoken question about the dark areas on Aria’s skin we have noticed in photos. We were worried but now can relax on that score.
Yes you are right. Although it is hard to see Aria sad when folk leave, it is a very positive sign that she is reacting normally, rather than passively. Have a happy weekend all four!
# 26 Jun at 9:59 pm
Hey you guys – continuing to pray for you all. Lovely to hear of so many positive steps forward. From a kiwi friend x
# 26 Jun at 10:24 pm
So appreciate your time and effort in keeping us updated.
Sometimes it must be the last thing you want to do after your days.
GO ARIA
# 26 Jun at 10:26 pm
praying for you all as always
# 27 Jun at 1:03 am
Every morning when I wake up I say a quick prayer that Aria is having a good day. Thanks for updating us so regularly so we know what specifics to pray for (and to give thanks for). God’s healing hand is certainly showing lately. Blessings to you all,
Judy.
# 27 Jun at 2:43 am
yay aria you are doing so well!! awesome that you hav had friends to visit today. hopefully it wont be long and you’ll be leaving with them! i enjoy each and every update and appreciate you both taking the time to bring us along with you in your journey anita & hamish. Love and hugs from nz xx
# 27 Jun at 5:02 am
We prayed today at church for you all, especially for Aria. We thank God for all His little and big blessings, we couldnt be more happier with all the progress Aria has been making. God is sooooooo good amen. Now we give Papa all the bumps she has had today and thank Him for finding out about reasons behind the bumps.
God bless you Hamish, Anita, Ashe and Aria bless all those who are around her to come to know our Lord and Saviour Christ Jesus amen. Thank you Papa for many more miracles in Aria’s life thank you Praise Your Holy Name Papa amen amen amen. We acknowledge and Enjoy God’s miracles daily, love in Christ, Noa and family.
# 27 Jun at 12:33 pm
She’s had a busy week, that’s for sure! Get some sleep Aria! I’m glad she had fun with her new friend Praja! Maybe they will be best friends, who knows. I hope Aria continues to do well! God Bless!