Sunday, April 1, 2012

T +3 Morning

Thank you all for your continued support.

Murray has had a good night in the ICU.  He is now requiring no blood pressure medication at all and his oxygen levels are a lot better.  I haven't yet spoken to the doctor but his overnight nurse said the plan was to start trying to wean him from the ventilator today.

Miss Ashlea is a little miserable this morning.  She is still very fluid overloaded which is making it hard for her to breath.  They have decided to turn her epidural off in the hope that she can be more mobile and try and shift some of the fluid.  The problem with that is that her pain will be a lot worse today.  At the moment we are trying to manage her pain with oral medications - which means we also have to manage her nausea from those pain meds.

Overall though she is doing well.  Her kidney function is spectacularly good - her creatinine is 28.  28!!!

The plan with Ashlea is to try and get her onto all oral feeds and pain medications so that she will be more free to move around and clear the fluid that has built up in her tissues.  She is quite puffy and uncomfortable and her lungs have quite a bit of fluid in them.  They have given diuretics to help shift some of the fluid - the problem is they only work for a short time.

We are hoping to sit her up later today and if she is up to it to possibly go for a little walk in the wheelchair.  This is where having CP as well as kidney failure really sux - she needs to be mobile to help recover from the surgery but her mobility is severely affected by her CP.

Ashlea's lovely preschool teacher from last year is going to come and sit with her this morning so I can go and visit Murray.  Carolin is bringing the girls over to visit Ashlea this afternoon.  I really don't know whether to let them see Murray.  Emma in particular is prone to anxiety so I don't know whether it would be helpful for her to see him like that or to wait until he is a bit better.  Any thoughts???  A good friend who has done the ICU journey has given me some good suggestions but I thought I'd see what the general consensus is.  At the moment Emma and Audrey have no idea just how sick Murray is.  I really don't know how much to tell them.

Thanks again for all the prayers and well wishes.  I will update you all again this evening.


Susan, Mum to Molly said...

Dear Alison,

Dilemmas are awful.

Follow your heart and gut on whether to let the girls see Murray...

I really hope that once you've seen him yourself this morning the decision will be clearer and easier for you.

Huge hugs, and grateful that your patients had an uneventful night,

Susan xx

Anonymous said...

Thank you for the frequent updates. I am pressing refresh way too frequently.

Really hard question. I would be inclined to ask Carolin, who knows your girls so well, and Dave, who has been such a good friend to Murray since ??? Carolin will be able to help you assess how they might react (so thankful your girls have her for their aunty!), and while it has been a long, long time since I saw Dave, I remember him as a wise and sensible person even way back then - I think he would provide good advice.

Some things to factor in - are they asking to see him? Is he asking to see them? What might be gained or lost by waiting a day? Any advice from the hospital staff?

Whatever you decide will be right. (which sounds like a really stupid thing to say - but it will be). And you know you have a gazillion people praying for you - I've just added wisdom and calm decision making to the list of things to pray for for you!

Thank you again for the update, it is good to hear things are improving for them both. Continuing to pray for you all..... Margaret S

Rosemary said...

Having a child who is prone to anxiety I understand the dilemma, however I have found that he was anxious regardless - that is the whole point about anxiety, it often defies our logic...
I guess if Em has seen Murray post op already - relatively well and conscious, then it may well be better for her not to see him at the moment, given the contrast. If she hadn't seen him yet, she has no other point of reference as to how well he is doing...and she will take her lead from you - mum is upbeat and saying this is normal, happens to some people etc, he'll recover, ALL GOOD. You know your daughter best, maybe the not seeing him will be the real problem, For me, the not knowing is always the kicker...
We will pray today, not just for the healing but also for wisdom - and a courageous heart for your other girls, that in their own way, God would grant them understanding and peace that He is in control and always good. Love to you xx

Sarah said...

Very hard with her cp and mobility. Hope her pain is managed well orally and she can at least get into her chair.
Thinking of you all and hope Murray continues to improve as well as Ashlea.
I agree with Susan, you will know if it feels okay for the girls to see Murray or not, not an easy decision at all x

Gina said...

Hey Al, great to hear Murray has stabalised. Hope they can find a happy balance for Miss A.

The main thing is to follow your instincts with the two girls seeing Murray.

Shawn's and my convo about it (yep brought in a boy brain) was that if there isn't a pressing reason for them to see him prior to being weaned off the vent then that would be the consideration. Since he is sounding like he is a bit more 'out of the woods' than he was then you might be able to wait and see how he goes with weaning, and you will certainly know more when you see him.

So thrilled to hear of a night with no surprises for you all. It's amazing how important uneventful becomes...

Big love
Gina, Shawn & Mac

Casey said...

If Emma is an anxious girl, perhaps wait and see when they expect to get him off the ventilator before you make your decision. If its soonish, maybe you could wait before they visit him. My experience with my girls (and memories of having a sick father as a child) is what children dont know about they dont worry about.

Kat said...

So glad things are looking up! I'd probably keep the girls away for another day- but really you have to go with your gut on that one. Say Hi to Sue from us :)

Mama Kat said...

Just started following your story, ad when my youngest was in the ICU and very sick we allowed my oldest (9 at the time) to come and see her. Anytime after that he got very worried and time she would get sick (at home or have to be hospitalized) he would ask for pictures and wan to make sure she was never "as sick as the time when you let me see her". However about a year after Her initial hospitalization (3 years ago) I saw a picture pinned to his wall of when she was at her worst. I asked him why it was there and he says "to remind me of how good she is now". I figured either way I should start saving for counseling! :)

Ramona Hester said...

Oh you are *Alison* who knows Mandy O and whose mother goes to my church! Penny just dropping...

Anyways was just reading your blog. These are big days...thinking of you! Ramona