2010 November - Aria MacDonald

Well its been a day since Aria has been in surgery and all sorts of samples were taken and I am happy to advise that we know absolutely nothing more than we did before she went in for those procedures. Now this isn’t entirely surprising and we did know some of the test would take a few days to be completed but it would of been nice if we had some idea of what is going on.

Aria is doing well today, her oxygen requirements and support continues to decrease which is great. The intensivist (Dr in charge of the breathing side of PICU) is taking things slowly and carefully with her but we will get there in the end I’m sure. She is nearly her normal self in terms of activity level, she has been playing and happily standing up once the IV luer was taken out of her foot. She is a little sleepier today than usual but that is probably down to a bit extra work with her breathing.

Tomorrow should hold some answers for us hopefully, not sure what they will be or what that will mean for our little journey but we rest in God’s hands until then.

Aria finally got to the OR at ten this morning.

The first attending did her scope and he said that everything looked great.  Which we kinda already knew but it was good to hear.  Which means it is a lymph node issue.  He did her last scope so has seen her airway and lungs before we were pleased it was him doing it again.

Aria is out of OR and breathing on her own, the breathing tube was removed.  So we waiting see if she can do it herself.  They will be doing hourly blood gases.  Going to be an interesting day.

Maybe tomorrow we will know what we are looking at but right now we rest and wait.  It is tough and we are hurting but keeping on keeping on.

From Hamish’s sister Megan:

But when I’m afraid, I will put my trust in you
I praise God for what he has promised
I trust in God
You keep track of all my sorrows
You have collected all my tears in your bottle
You have recorded each one in your book
This I know:  The Lord is on my side.
Ps 56

3PM UPDATE

Aria’s blood gas came back much improved at 1.30.  Phew!  She is still working pretty hard to breathe but she is asleep and lying back on pillow.  This is a great sign!  The very first time we tried to extubate her after the first transplant she would lean forward and looked really scared.   She is on really high settings on the Hi Flow o2 but we have been able to wean a little so that is great.

I spent the morning at home with Asher and came in at 2pm.  It was tough to walk into her room and see that ventilator in her room that had stand there for so many difficult months.  It was off and not in use but there as ‘stand by’.

Asher is at the zoo with his little mate Issac and our friend Elaine.  Hamish had a tough night sleep and early wake up with an 8am trip to the OR.  He’s a trooper and has gone home for a rest and shower.

If you have a moment you can watch this little story about an amazing little girl waiting for a liver transplant.  The surgeon who did Aria’s 2nd transplant features too as does Aria herself very briefly.

10pm Update Aria is still doing great.  Have managed to wean her o2 pretty well although we have had to slow it down.  Unfortunately she has a little hole in her lung which has caused an air leak.  Thankfully, oddly enough, Aria’s lungs are pretty tough due to her lung disease and therefore it didn’t end up collapsed.  But we need to keep her lungs well oxygenated so that the air on the outside of her lungs will be absorbed.

She is sleeping alot and she has the most wild hair do- pigtails gone crazy!   She won’t thank me for posting a pic when she is older!

Hopefully tomorrow we might start getting most results.