Frustration Station
Aria is doing great! Â So great. Â At rounds today, as she was watching Mickey Mouse in spanish, everyone joked that at least if she was hanging out in the PICU would she mind terribly to actually look sick!
She is on about a .5 of a litre and is progressing everyday. Â Unfortunately her epic IV fell out this morning and we had to place another one in her foot. Â She did awesome and was so brave, didn’t kick or anything. Â She is coping ok and figuring out how to have fun.
We are stuck here until we get a treatment plan. Â Is it fungus or a bacteria causing this? Â We don’t know still and that has been our choice. Â But now she is breathing better we feel better about scoping her airway and getting a sample of whatever is down there. Â I don’t see how we are going to avoid doing that. Â ID don’t want to leave her on a long course of anti-fungal without a sure diagnosis and Hamish and I don’t want to leave her on a full course of IV ABX and miss Disneyworld without a sure diagnosis. Â I think the transplant team will have to bite the bullet and do it. Â Tomorrow the plan is to re CT her and see if the treatments have worked.
Please pray for us. Â I feel so lame, this admission has only been a week but Hamish and I are both tired. Â One of us ‘sleeps’ here and then goes home to look after an active two year old. Â Actually Asher is a sweet boy but he is still a boy who wants to play and run and eat candy all day. Â The other one sleeps at home after a full day in hospital with Aria tired from the previous night of not much sleep. Â No one seems to be able to catch up. Â Hamish is great, he does tired really well. Â I do it less well.
The kids are managing pretty ok. Â Asher missed his Daddy last night and had a bit of a meltdown last night when I put him to bed. Â Big fat tears. Â Every morning he askes ‘go see Awa today?’ Â Which we do and then he doesn’t want to leave.
Anyway would appreciate prayers for direction and peace. Â Thanks for checking in!
10 Responses to “Frustration Station”
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# 30 Oct at 2:20 pm
Nice that Aria is so enjoying life. That makes everything so much easier. God has given her the beautiful gift of contentment and the ability to have fun in spite of. Wouldn’t it be great if we adults could be as uncomplicated and happy with whatever. Aria displays a beautiful example of trust.
# 30 Oct at 2:23 pm
Up early this morning watching 5000 “madness” running over the Harbour Bridge. Better the devil to know tan the devil you won’t know if you do not bite the bullet and have the scope done…..never under estimate the power of little Asher in Aria’s amazing journey. I bet her face lights up each time he enters that sterile PICU environment. He’s a real champion in our eyes.
Hope the CT proves that improvements have been made. The .5% O2 sounds positive….go Aria.
Love to all
Anne & Colin
# 30 Oct at 2:54 pm
Praying for you all at Redeemer today.
In Christ
Tony
# 30 Oct at 3:03 pm
Praying for deep refreshing sleep amidst ‘tag parenting’. It is hard, as is uncertainty. Yay for well siblings – it’s hard to meet their needs with a full time care child, but we so know that each will be a huge blessing to the other – we’ve seen it for sure, and it can’t be quantified or underestimated…. none-the-less, very tiring for the parents. Much love my friends.
# 30 Oct at 3:07 pm
Praying for peace, grace, strength, perseverance, and answers to Aria’s problems. Also for good rest and sleep for each of you. Although this is very hard on each of you, may the Lord cover you with His grace to walk this journey. Sending my love…
In His love,
Carolyn O’Cain
# 30 Oct at 4:35 pm
Yes, parenting shift work is so draining and tiring whether it is the day shift or night shift! Hamish always did so much better than me at night shift – he could cope with not much sleep and working a full time job! (not that being day mum at hospital is easier with all the procedures you have to be part of, the entertaining of one or two kids in hospital, finding time to eat and coping with having absolutely no time alone to yourself to recharge and having no relief from the stress). So give yourselves a break – you are both doing an amazing job as super parents and your children are happy, well rounded, loving individuals who love and accept life as it is.
Hoping for positive medical results and a diagnosis too so you can be at peace in your minds. Hugs xxx
# 30 Oct at 9:38 pm
Thinking of you guys at the moment, hoping answers are found soon so you can all be home together again. Love to y’all xxx
# 30 Oct at 10:40 pm
Anita your family has been through so much. It’s okay to be tired. I will keep praying God will give the doctors wisdom on what to do next. In the meantime, I will also kepp praying that Aria will still be able to go on her dream trip to Disney World. I will also pray that God will give you strength and rest! God Bless!
# 1 Nov at 8:41 am
hi guys,
have tried yesterday but could not get thru so have checked in again and find very interesting reading. what a journey McDonald family what a journey. But we always know PAPA ALWAYS ANSWERS THE DESIRES OF YOUR HEARTS. I LOVE YOU ALL DEAR BRO AND SIS AND YOUR DEAR CHILDREN AND ALL DOCTORS, NURSING STAFF AND ALL IMPORTANT PEOPLE WHO WORK FOR ARIA’S FAITHFUL WELLNESS, THANK YOU ALL FOR BEING THERE FOR ARIA AND FAMILY. MOST OF ALL THANK YOU PAPA, THANK YOU JESUS LORD, THANK YOU HOLY SPIRIT FOR LOVING ARIA AND FAMILY, BROTHERS AND SISTERS FAITHFUL PRAYERS AND LOVE AMEN, AMEN, AMEN.
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