2010 November - Aria MacDonald

Aria had a great night and continues to do well. YAY!

This is her at 11.30 last night! Clearly not sleeping and breaking one of the long list of rules they make you sign when you are admitted! You know, lights out at 10.30, don’t bring inflatable furniture or beer to the ward etc.

Hamish and I were trying to decide last night if, here in Litigation Land, they would let us do IV ABX at home.  Guess they let people do TPN at home so they must.  So we asked and turns out they are fine with it.  So fine you don’t even have to get special permission.  At home, even after doing TPN for months, we have to get observed and signed off by two hospital staff.  So, goes to show you never know.  Anyway it has been also a year since we have done anything with Aria’s line we are keen for a refresher.  But after 3 and a half years I guess it isn’t something you can’t quickly forget.  Thankfully it is a 12 hourly med running over half an hour, totally manageable at home.

If Aria keeps doing well then we should be home by Sunday or Monday!  Although this is the third time home has been mentioned so we aren’t going to get to excited just yet.

It seems like good day bad day good day bad day.  So today is a good day.  BUT we are hoping we have seen the end of the bad days.  Why?  Because Aria peed off over a litre of fluid yesterday!!  YAHOO.  Finally it seems that this extra fluid that has making it difficult for her to breath is going.  AND she is back on regular O2 and doing great.

In other stink news the sensitivities came back for the puesdomonas  and it is also almost fully resistant.  We are waiting for further tests (which I don’t quite understand) but we only have one antibiotic left in our tool box.  So she started that today and there will be a two week course.  So all things being equal and with on other dramas Aria should be discharged the day before Thanksgiving.  We really really hope to celebrate thanksgiving, our first and only, in the US AT HOME.

Everyone seems fairly relaxed about the pusedomonas, no one is panicking or massively concerned.  I think they have decided that now Aria is six months out of transplant and no hint of rejection they can safely lower her dose of immune suppression to pretty low and allow her own immune system to fight it.  Which it must of considering it was in her blood and then disappeared without much of a fuss.

Today we are having a not so magical day.

Yesterday Aria was the life of the party. Today she is a sleepy, itchy, fiesty wee girl.

Aria got next to no sleep last night as she was uncomfortable all night (fluid issues?) and was working harder and harder to breathe. We ended up putting her back onto the high flow oxygen to try and give her some relief , she is breathing easier but it didn’t help her sleep like it did the other day.

New today is the crazy itchiness which is accompanied by a widespread rash. Again we have no idea what exactly is causing that either.

We have a couple of other little bumps on the go to, overall we seem to have one great day, then one not great day.

There are still theories to explore and courses of treatment to persist with, however it just feels lousy to make good gains and have them all slip away and actually have new issues to deal with.

However we will persist, accepting that we are her in the magical land of PICU as long as it takes to get things right again.

Verse of the day for us: 2 Thessalonians 3:5 May the Lord direct our hearts into God’s love and Christ’s perseverance.

So Aria’s little random temp spike and WBC spike (to 34) was actually a bug in her blood!!!  No way.  Except oddly enough her WBC dropped down to 21 this morning and she hasn’t had a temp since and has been completely fine today.   Having bacteria in your blood is fairly serious, previously Aria has been very sick when this has happened.  Even more odd is that she cultured bugs from her line and from a needle stick taken in her arm, so it spread right though her body.

We are waiting to hear what bug it is.  We know it is gram negative.  We are HOPING it is NOT puesdomonas and it is not  ABX resistant.  How could this be back?

A new surgeon this week, the infamous Dr Botha.  So the pulmonary attending came up and read the CT and offered his opinion on things.  Previously everyone was thinking it was fungus or bacteria or PTLD and all the tests have ruled that out.  The new theory is that it is ‘consolidations’ in her lungs.  Areas of lung not in use and that need to be opened up.  This is all trauma from being intubated and on the vent so long.  So Aria has a few new therapies to help open her lungs out.  Apparently this kinda of complication post transplant is quite rare although it does happen.  Hopefully in time it will improve.

We sit and wait to see if we have another 2 weeks in hospital on IV ABX, should know tomorrow.  I hope not!  But I guess it is likely.

Aria is doing really well.  She is so stinkin’ smart.  She was in her bed and I was across the room and the nurse came in to talk to me.  The nurse said to me she wanted to change Aria’s central line dressing.  Of course Aria heard and burst into tears.  We have always called in a wiggle dressing and I didn’t think Aria knew what a central line dressing is given she hasn’t had one for ages.  Poor Aria, she hates having the dressing pulled off but she calmed down after we talked.

Aria started her cough assist therapy, it is mask that covers her nose and mouth and pushes air into her lungs and sucks it out again.  It is pretty full on and she did awesome at it.  I can imagine how scary it must feel.  Then we changed her wiggle dressing and again she did great.  Then we switched her over to regular O2 and she is doing great!  Heaps of progress made today!!!!

We are so over being here but regrouped last night after Kathleen and Anita’s comment on the post yesterday- thanks you two!!!  Funny, you ask Aria how long she was in hospital this year for her new tummies and she will say ‘Two weeks!’  No concept of time.  No point counting the days and hours.  Rather we will focus on loving each other and God and getting thru each day.

Yesterday one of the GI docs who we like a lot stopped in to say hi.  From his stand point this admission is mainly lung and kidney related so there isn’t much for him to add.  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.  Yes back to NZ.  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.  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.  It was for sure a watershed conversation in our journey here and we are so pleased to have had it.  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.  So disappointing because temps have not been an issue this admission.  Is this something new?  She is tired and her o2 requirements have gone back up.  AND the most disappointing thing is that the gains we have made on her fluid loss yesterday have reversed.  So we sit tight for today and will re CT her in the morning to see if anything has changed with her lungs.  The end of this already two week admission doesn’t seem to be in sight.  We still do not know what is wrong with her.  Prayers are needed!

Aria is much better today!  Her weight is down and she was negative 400mls.  Yay!

She had a good nights sleep and was rested this morning.  She is currently standing up and managing some giggles and smiles.

Strength from God is something I struggle to fully articulate.  This mornings post was straight to the point I guess.

This morning I was calm and fine.  They talked about intubating Aria this afternoon.  I said ‘ok- whatever needs to be done’ I watched my daughter struggle with her little chest heaving up and down.  I was ok.  Not emotional, not upset just ok.  I was able to make conversation, understand what was being said and talk thru all the options and what was ahead for Aria.  I was able to not call Hamish and let him rest.  I did that not really know why or how.

Now I sit tearful and sad, the reality of what we almost faced today reminds me of those months were did actually face Aria being intubated for so many weeks.  I actually went thru to look at pictures.  Our March file is strangely light, there were very few photos taken that month.  Knowing at the time we didn’t want to remember it.

This morning there was strength and this evening there is pain.  That’s ok. There are seasons, sometimes in the same day.

How do you feel broken and rebuilt at the same time?  This year broke my heart, I feel shattered.  Yet I feel rebuilt, taken down to the foundation of who I am in Christ and restored, better than before.  Better from knowing God.

I realise I might of shot myself in the foot in my previous post.  The emails and words and posts we have received containing bible verses are the most treasured, it’s those verses that get my thru the day when there are no words.  I guess of should of said ‘christain cliches’  But it was an honest reflections of my own personal journey, nothing else.

Aria is doing better this afternoon, much better and we have been able to wean her O2 and she even did a great PT session.  How great is our God?  He takes a little girl who looks like she needs to be intubated to a little girl walking and doing exercises all in the same day.  A little girl close to death for over 6 months to one restored and rebuilt.

Lovely support today from our team.  This weeks surgeon makes me nervous but he sat on one of Aria’s little chairs and talked with me.  It was kinda funny, this big shot surgeon on a little wooden seat made for a 2 year old!  The transplant co-or talking with me about cancelling our Make A Wish next to me with her arm around me.  The Intensive Care doc sympathizing and expressing his care and concern for Aria.

Asher is currently laughing at whatever Wii fit game he is playing, better go put the darling to bed.

You guys are great.  Thanks for sticking with us!  She’s worth it!

Aria is worse today and we aren’t going anywhere.  She had a rough night and poor girl could only sit bolt upright and couldn’t rest.

She is back on the Hi Flow O2 and it is up to 80% and 10 litres.  There was serious talk of intubating her at rounds and the Intensive Care team are back on the case after discharging her yesterday.

They decided to do a blood gas before any action and thankfully it came back normal.  Everyone was quite relieved particularly us.

Her chest x ray today was really wet and she is almost weighing in at 20 kgs.  So she has a lot of fluid on board which is the likely reason she is having such trouble breathing.  She is a delicate flower is our Aria.

We are praying for lots of pee!! And to avoid the dreaded intubation until she can get some fluid off.  Her immune suppression drug is running a bit high and her kidneys don’t like it, so she is going to skip a dose this evening.

Thankfully now she is lying right back and actually sleeping, thank you Lord!

Ok, we have pretty much everything back from Mondays explorations and the conclusion is that there is something wrong with Aria. However all the tests in the world have been able to reveal only negative results. So while we all know that something is wrong with Aria we have no idea what that something is.

For now the plan is for all the treatments she is on to stop, for us to go home tomorrow if she doesn’t go backwards overnight and then wait and see if she ends up back in hospital worse than ever. If that was to happen then the next logical step everyone agrees on is to go in after a hunk of lung and get a (hopefully) definitive answer. We aren’t doing that right away because getting a chunk of lung is a pretty major undertaking and we don’t want to do further harm to her delicate lungs unnecessarily.

We like this plan, best case scenario, Aria gets better and goes from strength to strength and we’ll put this down to some random and unusual virus. Worst case we end back here in a few days/week but better off for having the family home for a time to recharge all our batteries.

This has been a weird admission, lots of big ‘what ifs’, a pretty happy PICU-bound Aria, plans changing at every turn, and no answers at the other end. It is reassuring that God knows what is going on, but sometimes we would really like it if He would share with the group.

48 hours since Aria’s trip to the OR we still don’t have answers.  In someways that is good and others not so good.

No bacteria has grown which is good.  The puesdomonas that haunted her for months seems not to have reared it’s head.  However she has been on ABX so it might be slow growing but 48 hours later it is most likely clear.

The fungus test was sent later on after being missed the first time.  Kinda annoying since that is primarily what we were scoping for!  So fungus is still on the table for causes and hopefully we will hear tomorrow morning.

The pathology for the biopsy of her lymph node should be back this afternoon although there are different theories as to whether that is the case or not.  As it was taken from her leg and not her lung it still maybe not tell us what we need to know.

It is kinda frustrating.  So many tests and they keep coming back negative or they aren’t telling us the answer we want.  We really really don’t want to biopsy her lung, that is kinda serious surgery.  But if this 2nd round of testing doesn’t tell us answers then we might have too.

Clinically though Aria is doing great.  Looked like her o2 wean had stalled this morning but she is doing great again and I am hoping to convince the team to put her on regular O2 this arvo.  She managed a bit of walking and is a happy chap.

Needless to say Disney is off.  There is no way Miss Aria is getting on a plane in 6 days time!  We will reschedule for another time, not sure when at this stage.

So we are waiting on the Lord- it is stinkin hard.  We are trusting in the Lord- it is stinkin hard.  We know He has a plan for her life- it is stinkin hard.  It’s hard, that’s ok.  God didn’t call us to a life of fairies and rainbows.  I was reflecting yesterday that I am actually thankfully for my suffering.  I am no longer young and idealistic about life, thinking I have all the answers to all the problems by whipping out a few bible verses to solve the worlds problems. Yes, in fact I think I have less answers but more understanding and a deeper knowledge of how God works in my life.

Speaking of bible verses, going whip one out right now!

Romans 8:18 (New International Version © 2010)

¹⁸ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

So looking forward to that glory!! Particularly for Aria.