Encouragement and….
Yesterday one of the GI docs who we like a lot stopped in to say hi. Â From his stand point this admission is mainly lung and kidney related so there isn’t much for him to add. Â But since he was there I took the time to ask him a few questions about Aria’s transplanted intestine and he took the time to answer which was really kind.
What hasn’t been said over the course of this admission was that we were actually planning to come home a couple of weeks after Disneyworld. Â Yes back to NZ. Â We felt things were going well and it was time to get home to a kiwi summer and for our friends and family back home to ‘meet’ this amazing new Aria. Â That plan is off now pending reschedule of Disneyworld and of course for this problem with her kidney and lungs to be righted.
One of the toughest things about coming home was Aria’s intestine.  She will be the only pediatric bowel transplant recipient in the whole country.  We are leaving Omaha, home of the largest peds transplant program in the US for our lovely island in the pacific 🙂  It is a leap of faith.  But one we are comfortable making.
Back to the GI doc, I said to him that I had a lot of faith and confidence in Aria’s new intestine and what did he think about that.  ‘Oh yeah, for sure, it’s top of the class, it is one of my favorites’  Our hearts were pleased.  He then went on to tell me a story about a child who was transplanted with the same set as Aria when he was 5 and he is now 18 and doing good.  And about 10% of kids actually go on to not even need immune suppression drugs long term, their body accepts the bowel like their own.  That’s amazing considering the bowel is such a tough organ to transplant because of rejection and transplant patients normally have to take immune suppression drugs for their entire life.
There are kids out there, post transplant doing GREAT, we just don’t hear about it cause they are off living life.
We feel encouraged and reassured which is great. Â It was for sure a watershed conversation in our journey here and we are so pleased to have had it. Â Thank you God!
So with that it makes it easier to complete the add….. part of this post.
Aria had a rough night and spiked a temp to 39/102.2. Â So disappointing because temps have not been an issue this admission. Â Is this something new? Â She is tired and her o2 requirements have gone back up. Â AND the most disappointing thing is that the gains we have made on her fluid loss yesterday have reversed. Â So we sit tight for today and will re CT her in the morning to see if anything has changed with her lungs. Â The end of this already two week admission doesn’t seem to be in sight. Â We still do not know what is wrong with her. Â Prayers are needed!
12 Responses to “Encouragement and….”
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# 7 Nov at 12:33 pm
praying for you all xx
# 7 Nov at 12:48 pm
For us humans who were born into “time” it takes a lot of faith to believe that God operates outside of “time”. (That’s why little children who still don’t understand the concept of “time” have less difficulty with trust). We are so used to looking at the clock face that we forget to look at God’s face. That’s a pretty tough assignment for any of us but harder still for you guys.Count on our prayer support for this assignment.
# 7 Nov at 1:43 pm
Amen, Amen & Amen to Kathleen & Anita’s comments. Praying for you guys.
“2 Corinthians 12:9 in Jesus words says My grace is made sufficient for you for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities that the power of God may rest upon me.”
# 7 Nov at 2:15 pm
Right with you my friend in prayer. So glad you had that conversation…. now, where did I put my helmet! X S
# 7 Nov at 4:08 pm
Believing with you and praying for you for victory! Kia kaha – Jeannie
# 7 Nov at 4:28 pm
My prayers are definitely with her! I’m hoping she will be better in no time! While we will miss your family being in the USA, we all know you want to be at home with family and friends there. Just one more reason for me to visit New Zealand. 😉 God Bless!
# 7 Nov at 5:31 pm
Praying for healing and peace. Continue trusting in the Lord for he is faithful.May you all have a good night.
# 7 Nov at 5:48 pm
Oh you made me cry with your comment about coming home -, I know how much you must be looking forward to that day. I’m happy to hear your amazing conversation with your doctor – it is so heartening to hear such positivity and confidence and to hear another great story about a child further on that Aria doing so well!
# 7 Nov at 11:51 pm
Thank you for such wonderful update and also for those that needing prayers. We look forward to your coming home as soon as our Father tells you so. You are such wonderful courageous brothers and sisters Hamish, Ashe, Anita, Aria and family. Praise the Lord to hear of such faith as yours, love always, Noa. By the way am back in Auckland now and I feel so good praying from home. Thank God for the Disneyland visit you surely look forward to, pray for all things working together for the good of those who loves the Lord, YOU ALL, Get well soon ARIA, AMEN!!!
# 8 Nov at 12:53 am
Have faith. My heart is with you all.
# 8 Nov at 1:24 am
praying for healing! with God all things are possible
# 8 Nov at 1:45 am
Praying for healing for Aria and peace for you and Hamish. Judy.