2010 October - Aria MacDonald

Aria got a repeat CT this morning, Sunday.  It looked about the same.  We were hoping for improvement but there is none.

So tomorrow she is off to the OR.  She will go under a GA for three things.

1.  A bronch, this will extract junk from her lungs which hopefully will contain either a bacteria, fungus or virus or all three.

2.  A biopsy of her lymph nod under her arm.  This is to avoid doing a more invasive biopsy of her lungs.  This should take PTLD/cancer off the table.

3.  A central line placement.  If it is bacterial Aria will need a course of ABX and the leur in her foot/hands are a bit of a stink way to live for Aria.  Maybe we won’t need it but it will be nice to have for IV treatments and bloods.

We are happy about this plan of action, it is now required.  There is still hope that we will get to Disney although it is looking more unlikely.  At least we will know either way this week.

Honestly, I am a bit heartbroken.  Sounds dramatic I suppose but I am sad that Aria has to have a line again.  Sad she has to be intubated again and scared she might not be able to be extubated afterwards.  Scared we have many more days in hospital, our family is hurting.  Sad we might miss Disney.

Asher and I are off to a birthday party today for our special friend Praja, knowing it’s not my party and I can’t cry if I want to!!  Hamish got down to Lincoln to watch the Cornhuskers yesterday while Stephanie and her SIL Megan had Asher.  We are trying to keep life going, thanks to the help of our Omaha friends.  Carol and Cordell have Ash this morning,  I had a bad night in with Aria so I was glad for the rest.

Aria is very very unlikely to have PTLD but it is yuck just to have the C word spoken in relation to her after all we have been thru this year.  It is a big burden which I am handing over to God to carry- it’s too heavy for me!

Aria is doing great!  So great.  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.  Unfortunately her epic IV fell out this morning and we had to place another one in her foot.  She did awesome and was so brave, didn’t kick or anything.  She is coping ok and figuring out how to have fun.

We are stuck here until we get a treatment plan.  Is it fungus or a bacteria causing this?  We don’t know still and that has been our choice.  But now she is breathing better we feel better about scoping her airway and getting a sample of whatever is down there.  I don’t see how we are going to avoid doing that.  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.  I think the transplant team will have to bite the bullet and do it.  Tomorrow the plan is to re CT her and see if the treatments have worked.

Please pray for us.  I feel so lame, this admission has only been a week but Hamish and I are both tired.  One of us ‘sleeps’ here and then goes home to look after an active two year old.  Actually Asher is a sweet boy but he is still a boy who wants to play and run and eat candy all day.  The other one sleeps at home after a full day in hospital with Aria tired from the previous night of not much sleep.  No one seems to be able to catch up.  Hamish is great, he does tired really well.  I do it less well.

The kids are managing pretty ok.  Asher missed his Daddy last night and had a bit of a meltdown last night when I put him to bed.  Big fat tears.  Every morning he askes ‘go see Awa today?’  Which we do and then he doesn’t want to leave.

Anyway would appreciate prayers for direction and peace.  Thanks for checking in!

The team’s idea at rounds today was to do nothing.  Perfect!  We like nothing.  How strange- we are wanting positive test results for fungus and for our medical team to do nothing.  Most of the time you want negative results and for the team to do something, anything.

Unfortunately all three tests have come back negative and there is no evidence of fungus.  Still the thought is that those nodules on her lungs are fungus.

So the question is now do we bronch her cause technically we don’t know what is wrong with her.  Put her to sleep, intubate her and put a scope down her lungs to fish out a sample for bugs.  The big risk is that she is likely to remain intubated for perhaps months like last time.  Maybe not though but it is a risk.

But Miss Aria continues to improve.  Her o2 rate stayed at 40% last night but her litres did go up from 3 to 5.   But she didn’t lose as much ground as the night before and we are weaning her today and she is doing well.  Would be great to get her down to 2 litres and 30% and then she can go on to regular o2 and get out for a walk.

In other good news her IV in her hand is doing well.  She protects it really well and all sit she rests her robot arm on a pillow next to her.  As a result it has lasted 48 hours and still doing well.  We really don’t want to have to put in a more permanent or semi permanent line.

So everything is still up in the air and we still don’t know how this will go.  We are hoping she continues to improve and maybe re CT her on Monday hoping to see improvement.  If there is improvement then we can conclude we are treating her correctly without an official diagnosis.

Anyway she is sitting at 100 so going to see if we can wean again

Thanks for checking in on us!  We appreciate your support.

UPDATE Aria has had a really good day.  Weaned on her O2 and she is back to where she was yesterday.  So she isn’t declining, that is good.  Hopefully it is a result of the ABX or anti fungal and also getting more fluid off her.  She has been really happy and sat in her little chair at her table and played most of the day.  Standing up too and taking steps.

Unfortunately two of the three tests have come back negative.  Still one more to go though.  Everyone is just hoping she improves so we can avoid a bronch and possible intubation.

(more…)

Today Aria took a couple of steps backward.  She is back down in the PICU and they switched her over to hi flow O2.   Her and I had a rough night.  She would de sat down to 80% and would wake up and panic a bit.  Fair enough, it wouldn’t be fun at all.  She would manage to breath her way out of it but it took hard work.

They started an IV today in her hand to give her a top up of something I can’t spell.  And so they decided to give her IV ABX and anti fungal.  We are told that if it is indeed a fungus in her lungs then we won’t see an improvement for 5-7 days  That is disappointing.

You might be wondering how she managed to get fungus in her lungs.  Apparently depending on where you live the US different things float thru the air.  Unfortunately in Nebraska and surrounding states there is a lot of fungus in the air.  It doesn’t matter to much unless you are immune suppressed like Aria.

There was no bronch today.  We are still hoping the tests are positive on Friday and/or she starts to improve on the various treatments.  Everyone is super keen to avoid a bronch as it could very well end up in a week of intubation for Aria based on her history and Disneyworld would be off!  But if we still don’t have answers and improvement then it will have to be done.

Overall though, she looks great.  She is laughing and happy.  Playing and painting and having fun.  She peed well and is looking less and less puffy.  Yay!

It’s tough.  Yes compared to what we have been thru this year it should be a cake walk.  But it isn’t.  It is still hard.  In fact based on what we have been thru this year perhaps it makes it harder.  I don’t know- that doesn’t make sense.  In the scale of ‘badness’ this is about a medium.  Trying to keep that perspective.

The past couple of days I have been really wrestling with fear and the prospects for Aria long term.   Really examining my faith and asking myself if I really living out the truths of the bible to not fear the future and to really commit her life to Him.  Unfortunately the further I get away from those intense days were we lived in the palm of God’s hand hour by hour I forget and start to doubt.  Little things I read or watch shake me.  Anyway- just a bit of honesty from me.  It is easy to say ‘trust in God’ it is harder to live it.  But God is good and sustains us thru these bumps in our faith.

My sister just sent me this verse, I think it is really appropriate for the struggle above.

“Surely goodness and mercy shall follow me all the days of my life… ” – Psalm 23:6 NKJV

Please pray for Aria.  Please pray she might improve very soon.  Please pray for Hamish and I as we get little sleep in hospital.  Thank you!

We have answers.  It feels good to have them, even if they are not perfect.

Good news is that Aria’s kidneys look great.  She had two ultrasounds today and there was nothing of note there- Phew!  This is a relief.  She is peeing better this arvo and we are hoping that continues.

The result from the cat scan today is that she has nodules on her lungs.  They are treatable and could be bacterial, fungal or something called PTLD which is a post transplant cancer.  It is very unlikely to be that based on several things including negative tests from other things.

So we are taking bloods to check if it is fungus.  Not fungus in her blood, she would be very sick if that was the case.  But rather signals that the fungus in her lungs would send off if it was indeed in her lungs.  There is talk of a bronch tomorrow.  This is where they send a scope right down into her lungs and get a sample.  This will show if it is a bacteria and maybe if it is a fungus.

If all these test come back negative then we will have a get a biopsy of her lungs.  This is a fairly serious procedure involving a GA and there are fairly significant risks.  But this is the gold standard and from that we would know if it is fungus or PTLD.

So we are praying for a sign of fungus off her blood but we won’t know until Friday.  In the mean time we will start oral ABX and oral anti fungal.

Aria has had a really big day.  It started at 5.30am with a needle stick for blood.  She had her normal examinations by various people.  She then had a ultrasound of her kidneys- twice- this was around 30 mins.  A heart echo.  A CT scan- if you saw the Sunday or Attitude tv shows you will remember her having this and freaking out a bit.  There was no sign of this today.  She had a urine sample taken, a bag stuck on her ‘bits’, twice.  Lots of people coming in and talking to me and her.  She handled this all so so so well.  Everyone was so impressed.  I told her ‘Aria you are Mummy’s hero’  She laughed and said ‘Yes Aria is a hero!’  She was a joy to be with today, laughing, playing, joking and smiling.   She is my hero.

I spent most of the day busy and really really dwelling and living the verse I posted this morning.  Particularly when they came back a second time to scan her kidneys and particularly when the Big C word was being discussed.  So strange to watch these images of her kidneys and read all the writing yet having NO IDEA what it means until someone takes the time to tell me.  Which they do but it takes patience and trust.  I love how God promised that he would uphold me AND be with me AND strengthen me.  It is like He knows how much I struggle yet He is trying to convince me three times of His goodness.  He doesn’t need to do that!  He is God!  But how deeply he understands and loves me.

The privilege of this journey is that I get to see God working.  I felt Him today.  I saw His power in my daughter.  I felt him melt away my anxious heart.

Tomorrow’s verse for living is from my dear friend Lindsey.  Thank you Lindsey!

Lamentations 3:
22 Because of the LORD’s great love we are NOT consumed,
for his compassions NEVER fail.
23 They are new EVERY morning;
GREAT is your faithfulness.(!!!)
24 I say to myself, “The LORD is my portion;
therefore I WILL wait for him.”
25 The LORD is GOOD to those whose hope is in HIM,
to the one who seeks him.

Aria is back in hospital.  Stink!

We took her back Sunday morning because again she was breathing hard and not doing great.  She did great on Saturday and looked like she was turning a corner but alas she did not.  Her belly is a bit distended, she has lots of gas.  She is more puffy, clearly retaining fluid.

So today they are getting more aggressive with testing.  She will have a cat scan of her lungs, an ultrasound of her kidneys and we will get a urine sample to test for BK virus.  We are concerned about her kidneys and really hoping and praying that nothing comes of any of those tests.

The increased work of breathing and o2 requirements could be because of the extra fluid onboard and her low hemoglobin.

Overall she is walking around the ward and cracking jokes and doing fine really.

Anyway, there are much much worse places she could be in terms of her health.  I keep reminding myself that.  But we do not rest easy when there is concerns over her transplanted organs.  They are indeed precious.   Working hard today to fully rest in the Lord and not have fear.

Isaiah 41:10 (New International Version)

¹⁰ So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Aria made it to her party!  We were very pleased.  The doctors and nurses were really good about getting her out in plenly of time.  We saw Dr Botha this morning on rounds.   He said to Aria ‘ Have a good party’ and she said ‘YES!  and punched her fist in the air, it was super funny.

Aria and her friends went to Build a Bear in Oakview Mall.  They have parties for the kids and they take you around and you pick your bear and stuff it and all kinds of fun things.  Then we went for ice cream and the kids got HEAPS of presents from Make A Wish.  We asked Aria what her favorite part was and she said ‘games’.  She was a bit obsessed with the computers there.  But then she said ‘Friends’. I think she really liked having little people her own age to party with. Guess all those months in hospital she missed out a bit.  Thanks to all of our friends for coming, we so appreciated you being there!

Overall we aren’t super excited about the state of Aria’s health right now.  We would really appreciate prayer.  Her kidney numbers are a bit off and she is retaining some fluid.  We dropped her immune suppression drugs today so that might help.  Her asthma flair up, which is why she was admitted isn’t fully under control but a few more days of steroids should help.

The big Make a Wish trip is all planned and we are so excited.  We are just so hoping Aria’s health is good and she can fully enjoy it.

Just a quick status update on our Miss Aria and a wee story too.

Aria has been admitted to PICU today because of concerns regarding her breathing. She is requiring more support than usual at the moment and they want to keep an eye on her till they feel she is doing better. This may be viral related or perhaps asthma related, they are not too sure but they are keen to get it straightened out. The fact she is a bit low on red blood cells can’t be helping things either, they may need to transfuse to get that particular issue sorted too. The other contributing factor is that she is retaining a bit of water too which sometimes makes breathing a little harder.

All in all, things aren’t terrible but just out of sorts enough that some of the staff at UNMC want her there and not here at home. Anita is pulling the night shift so prayers for a good sleep would be appreciated.

Now for the little story; Aria is a very courageous girl as you all would probably have ascertained by now. This week she has had about 6 blood draws or lines placed, some by finger bities, others by pokes with needles into veins. As you can imagine these aren’t fun ever and are a cause of anxiety and worry for many, many people, kids and adults alike. Aria doesn’t really like them either, she will tolerate finger bities because they are better than pokes to her. Lately when faced with yet another of these situation as they are going on, or afterwards will say to us “easy peasy”. Obviously they are not easy, or peasy, but she faces them with the courage and can-do attitude that makes her such a special girl.

Anyway prayers that Aria bounces back quickly and we can get out of hospital tomorrow with a happier, healthier Aria, so she can go to her party at Build-A-Bear, the first part of her Make A Wish trip.

Took Aria to clinic today.  Met with the surgeon who did her 2nd transplant and we discussed the mystery that was the bleed from Aria’s bowel.  Since the scope didn’t show anything but nice healthy bowel it is all a bit strange.  Perhaps it could if been from where her bowel and stomach are stitched together, sometimes that happens or maybe her NG tube irritated something last week.  Anyway it has stopped now so that is good.

Her iron/hemoglobin is still low but hasn’t dropped further so that is good.  Hopefully she can avoid a transfusion.  Started a dose of lasix to help her pee more cause she is holding a bit of water.  Her kidneys are doing fine but just need some help.

Anyway this is the first time there has been any concern with her transplanted organs and we are glad it is just a little blimp.  Although at the time it didn’t feel that way!

She is still battling a cold and had a tough night last night.  But this evening she is looking better!