Small steps
At the moment Aria is in a phase of her journey where thing are being measured in small steps, a little increase here, a small decrease there. Each of these has us on the edge of our seats waiting to see if we are trending forward or trending backwards. Today we would have to conclude that we are trending forward….. ever so slowly.
A new team is on this week as the Dr’s from PICU and Transplant rotate each week and they explained to us this morning their particular approach to her situation. In essence this team’s primary objective is to reduce the potential damaging pressures her ventilator is currently set at. To do this they are willing to let some of the numbers we have been monitoring over the last few days take a bit of a hit.
So far today we have been doing ok, we have seen the percentage of oxygen she is being reduced to 40% and another couple of settings reduced by a little bit. Her blood pressure medication has been reduced to a point where it is primarily there just to help push blood through her kidneys. Speaking of kidneys, they continue to work ok, not enough to get all the fluid off but enough to keep the dreaded dialysis at bay.
We give thanks to God for these small steps and the avoidance of any major issues but hope soon we can take some big leaps forward, especially with her urine output.
22 Responses to “Small steps”
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# 24 May at 5:38 pm
Praying for those kidneys to kick in and for you to know strength as you watch and wait each little step. Much love
# 24 May at 6:15 pm
I hope she takes some big leaps forward too. Dialysis isn’t too bad.
# 24 May at 6:17 pm
Continuing to pray for your needs
# 24 May at 6:24 pm
Prayers that these steps continue forward and that the kidneys start to work a bit harder.
# 24 May at 6:39 pm
Thankful for small steps, praying that some bigger steps forward come soon and that the urine output steps up. Praying for you all. lots of love
# 24 May at 7:03 pm
I watched the Attitude programme on TV1 Sunday 23 May 2010 and wept, such a beautiful little girl who has had to endure soo much in her short life. My thoughts and prayers are with you all. Stay strong you are doing a wonderful job.
# 24 May at 7:10 pm
Praise God for the small, positive steps that Aria is taking. Things sound so much better than last transplant – I pray this will continue, and that our God will continue to heal her, howwever long it takes.
# 24 May at 7:33 pm
The words of a very old song come to mind:
“Tenderly He watches over you,
Every step, every mile of the way”
He is there, right there!
# 24 May at 7:52 pm
Baby steps in the right direction are good. I know you long for more but things will move at their own pace. Thinking of you all xx
# 24 May at 8:07 pm
I pray these doctors & nurses can help her get better! I would love to see a pic. of her smiling again! God Bless all of you!
# 24 May at 8:26 pm
Hi Hamish and Anita. Sounds like your Doctors are taking a very pragmatic approach to ensure you keep edging forward with small steps. I have been in Australia so yet to watch Attitude. Team at work said they were moved by watching you guys and seeing the change from Little Live Wire Aria that we all saw when she came into work to what she is in PICU at the time of filming. She is taking those small steps now to be a live wire again
# 24 May at 10:51 pm
Only just got to watch the doco (I’d taped it). So very very emotional with tear welled eyes & goosebumps. It made my heart swell at how well you are handling such a difficult journey & how strong & a great fighter little Aria is. The film crew did an excellent job of presenting it.
I’ve seen many many similar situations & circumstances (not multiple transplant as they not done in NZ but other cases) in my career (RN), each patient & family is different, but you guys amaze me at your openess & honesty in telling it just like it is to the average person….albeit much more goes on behind the scenes eh?
What a little blessing your Asher is, such a content, placid wee boy, so cute seeing him sleeping on Hamish’s shoulder as he was lifted out of the car. Had to smile tho Anita when you were shopping for a phone & resorted to ‘sign language’!!!) Yeah you in foreign country, but thought Americans were English speaking haha!!!
So lovely to hear that wee Aria is taking baby steps & whats more in the fwd direction, so encouraging. Still early days considering what she has been thru, so these baby steps are on the road to getting bigger strides, as her wee body begins to adjust & heal itself.
Excuse me for asking, I might have missed something you may have told us earlier, but, last time Aria had her own kidneys plus the 2 donor ones. Does she now only have the new donor ones or still have her own original as well??
Keep it up Aria, you can do it sweetie.
Hang in there Anita & Hamish, you are all awesome & teach us so much.
Love & blessings to you all
# 24 May at 11:02 pm
May God continue His good works
# 24 May at 11:58 pm
Hugs and Hope and am praying for Aria’s kidneys to work properly – hang in there
# 25 May at 2:13 am
Still praying daily that Aria will gradually get better and better, so baby steps are a good sign. Praying also for her kidneys to start working properly and strength for you all. Blessings, Judy.
# 25 May at 2:42 am
I was wondering too about how many kidneys Aria now has!! i am sure it was helpful getting the explanation about the current approach the team is taking. So much to take into account and it is easy to panic when you are looking at things from perhaps a more limited perspective than the medical team. But rejoice with each little step in the right direction. “May the God of peace Himself fill you with peace at all times and in every way” (2 Thes 3:16)
# 25 May at 6:07 am
Praise God for baby steps, and i’ll be praying for more in the right direction!
Belinda.
# 25 May at 1:18 pm
Our Prayers and Love are with yous all.
Kia kaha
# 27 May at 5:48 am
Very heart wrenching to watch your story,but these words came to me as I was thinking about you all. ‘All things are possible with God’Words of Jesus. Also a song we use to sing alot at Church, Have Faith in God,let your heart rest on the faith He has placed in your heart.Give thanks for the smallest things and the things that are yet to be. HE IS ABLE.Commit your family into His care,and know there are many people and angels standing with you. JESUS said”If you have faith as big as a mustard seed you can say to this mountain,BE REMOVED” Love and prayers,Michelle
# 21 Oct at 7:51 pm
Such a usefule blog…wow !!!!
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# 8 Jan at 1:22 am
I found this to be very good. I have already gone through and read many of your posts. They are fantastic!