2011 May - Aria MacDonald

Today is Memorial Day in the US, kinda like ANZAC day.

Another day of progress for Aria.  All the pressers have been turned off and she is maintaining her own blood pressure just fine.  Her chest xrays look a bit improved too. She is peeing a heap, around 100mls an hour!  Great stuff.  Her vent settings were up a little bit this morning and they changed them around late morning and she did well.  Hopefully we can be more aggressive and start weaning tomorrow but we will see.

They have her very sedated.  We don’t really see any signs of life from her, she is very asleep.  She coughed today, as much as you can with a tube down your throat.  But no other movement from her.  That’s fine she needs to rest and recover but I miss her.

The bug that was cultured in her lungs was cultured in her blood too.  But she has blood sepsis too, so again it is amazing she is progress like she is.  They are treating it with an oral ABX because the IV version isn’t made anymore, bummer.  IV would be better but oral will do.  She seems to be absorbing well so it shouldn’t be a problem.  She had a little temp of 37.8 but hopefully nothing will come of that.

On Friday I felt physically sick, couldn’t eat and when I did I felt ill.  On Saturday I felt nervous and optimistic.  On Sunday I felt relieved. Today I just feel sad.  Sad that Nana is here and Aria is missing out.  With Aria being so sedated we are home in the evenings.  She gets excellent care on the PICU so we feel like it is the right thing to do to take a break.  On Saturday we enjoyed the first home cooked meal as a family for almost two months.  Except we weren’t a family, someone was missing and it felt bad.  Felt bad to be ‘enjoying’ home life while our daughter was lying in the PICU and we long to be with her.  Sigh, there is never a easy way.

Words are really powerful.  Particularly in our situation.

Hamish posed a statement as a question to the surgeon today, along the lines of ‘so she is doing well…..?’  He said ‘yes’ and then qualified his statement with ‘actually she is doing remarkably well’.

First thing Friday morning after they got her stable his first words of advice to us on rounds was ‘Pray’  Aria needed prayer.  You- friends, family, blog readers prayed and God heard and answered.

Aria is down to one pressor med at a low dose and her blood pressure is doing really well.  We have been able to wean her vent settings regularly.  Today we are giving her a med to help her pee to shift the 3 litres of fluid she was giving on the day she tanked.  Once we shift the fluid on her chest her lungs will be able to work better and hopefully we can remove the ventilator.  It will take a couple of days.

We have cultured a bug in her lungs that she hasn’t had before but is naturally quite resistant.  But it is sensitive to three ABX and the Infectious Diseases team seem confident they can knock it on the head.  Kinda of thankful it isn’t her Pseudomonas back.  And it means they can take her off the other ABX they had her on.

Still though, it makes ZERO sense that she has recovered so quickly given her ZERO immune system even on the right ABX.  But when you factor the power of God into this it makes TOTAL sense.

Words are really powerful.  Thank you to everyone who left a comment or sent us a private message.  Thank you to all who offered up words to God.  They are the most powerful of them all.  Please keep praying, we are winning a battle but there still is a great war to fight.

Aria is back in the PICU on the ventilator.  Unfortunately unlike last time it is suspected she has an infection in her blood rather than a sharp shift in her fluid balance like last time.

Aria’s ANC is zero, which means she has ZERO ability to fight off this infection.

Yesterday she was stable and today it appears she is making progress.

Kids in this position can often crash very fast and often there is nothing that can be done no matter how hard the team work and what drugs they give her.

Yesterday things were really really tough.  I went in at 5am at the ICU Attending was trying to get an art line in (an IV which constantly measures her BP) and as they were trying to keep her BP stable.  I knew how touch and go things were.

Over arching this situation is her long term prognosis.  There was supposed to be a meeting yesterday with the transplant team and oncology in light of her recent bone marrow biopsy and complete lack of ANC.  But that was put on hold because of this episode and our need to just focus on today.  We don’t really know what treatment options are left for Aria and how extreme they may or may not be.  It isn’t something we really want to think about or discuss on this blog or in person, we just need to get thru this event and then we will face it.  But there may be some very hard decisions in our future.

By rounds yesterday I had worked myself up into a bit of a state and then as the surgeon walked in I just burst into tears.  I was so afraid of what he was going to say.  But he was really kind and he used the words ‘recoverable’ which surprised me.  I was prepared for a grimmer message.  The message from him and other senior team members is that we are not done fighting for her.  But he would tell us when they are done and they will always respect our wishes.

Hamish and I are in constant prayer and constant discussion about God’s work and plan in Aria’s life.  We really really plea with Him that He spares Aria’s life and restores her bone marrow either thru medical intervention or a miraculous act of mercy (or a mix of both).  We plea with Him that we don’t have to make any decisions to withdraw life support or decline treatment options for her.  But we fully give her over to Him knowing fully she is heaven bound into the arms of Jesus. We plea that He makes His will crystal clear for Aria.

Before rounds yesterday I received an email into my inbox from a friend updating us on a decision she had been struggling with God to make.  She quoted this verse:

James 1:5 (New International Version)

⁵ If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.

This brought such comfort to my heart.  Even though we don’t want to make decisions God will give us the wisdom to do so, if we get to that point, because we ask Him.

Nana is coming tomorrow, thankfully a day early!  Asher is excited and so is Aria.  We told Asher yesterday that Aria is really sick.  He said ‘Aria on number 5?’  Number 5 is the level that the PICU is on.  He is getting more knowing.  Not sure whether to let him see her in this state or not.  Maybe not.

But for today God is healing her and she is progressing, that is all all we need for today.  Because tomorrow has enough trouble of it’s own. Matt 6:34

The feeling we are taking today from rounds is positive.  There was no particular good news to be heard except they aren’t bothering with the liver biopsy, at least not today.  They feel it is a combination of drug reactions and general sickness so it will improve in time.  The ultrasound was perfect so that is good.

They are switching a few meds around.  The results from Aria’s skin biopsy came back, this time it is a med reaction causing her peeling skin still!  So we have stopped prograf, her anti rejection med.  This is a big call but it has been mentioned before that it could be causing her headaches (which were back last night-boo) and skin issues.  So they are starting something difference, same family of drug though.  One of the side effects is hair growth!  Perfect!  She needs some help in that department.

There was more talk of home today but her blood pressure is still pretty high and needs some management.

We have a difficult situation here is our apartment which we would appreciate prayer for.  Nothing to do with us rather a difficult tenant which nearly had me calling the cops last night, thankfully someone else did.  Anyway said tenant approached me today, accusingly, and I feel a little shaken.  I don’t have any energy for extra stresses!

Anyway please pray for Aria’s bone marrow and liver!  God hears 🙂

Today was news day.  We had the results of the bone marrow and skin biopsy and the CT scan of her lungs.

Good news on the lung front, the suspected fungus nodules are GONE!  Just gone.  And there was nothing else of note except a slight regress in her chronic lung disease.  But we had stopped a bunch of treatments so those are going to be restarted which will take care of that.

Things were bad when we thought it was fungus in her lungs, it would of meant a long treatment and no hope of chemo being restarted.  It is a big relief to have this off the table.

Unfortunately though her bone marrow showed 10% function and no clear diagnosis, inconclusive.  But I asked if the 10% was ‘at least something right?’ and they said ‘yeah sure, it is’

Also Aria’s liver numbers continue to climb which is not good.  Her eyes are yellow from the high bili and now her other numbers are climbing.  Still she has been having blood transfusions etc and was on a treatment for the fungus which could of been causing her numbers to climb (but not the bili).  There is a good working theory as to why her liver could be mad.  Now we can stop the fungus treatment everyone is hoping things get better.  A liver biopsy might be scheduled later in the week but having an ultrasound today to check blood flow and running a bunch of other tests.

So today we celebrate the good news.  And personally I am a fan of no news.  I would have rather had an inconclusive bone marrow test than a bad one.  I very much just like to put my hands over my ears and ride it out.  Hamish of course wants a diagnosis, like any normal parent would!  I don’t know, this journey is so tough it is hard to know what to hope for.

In other news Aria is doing really well.  She is learning to write and read which is super exciting, every day she gets better.  She is a busy bee most of the day.  She is back on her feet too.  Her eyelashes are sprouting some solid growth and her eyebrows too.  Head is still bald as, but it will come.

Asher was up till 9pm last night.  He was crying so I went in to check on him.  ‘I need my sister’ he told me with his little chin quivering.  ‘Aria leave hos-e-al’ (hospital) Poor boy, honestly my heart just hurt for him.  I asked him if he wanted to talk to God about his sadness and to ask God to heal Aria like He does in his bible.  He said ‘yes!’ So we prayed and by the end Asher was feeling better and went straight to sleep.

God is doing great things.  He has done great things.  There is more to come!

Aria had a dose of chemo on Friday.  Her ANC bottomed out to 100 and something needed to be done.  Chemo was stopped a week or so ago due to concerns about there being fungus in her lungs.  But now the team doesn’t really feel like it is fungus chemo is back on the table.

Honestly, this feels like a really yuck place to be in.  There are no answers and not really a diagnosis.  There are different opinions, some say PTLD, some say not.  The Head of transplant decided it was PTLD and he is the boss of the whole world.  Well not really, but given my world is this transplant program it feels that way.

Actually in my head I know that it doesn’t matter if we have the perfect diagnosis and perfect treatment plan God can overcome and work a miracle with or without human means.  He works thru many many ways.  Sometimes it is conventional western medicine and sometimes He uses an unexplained miracles and sometimes it is somewhere in between.  And always He does more than we can ever ask or imagine.  And He is real true boss of the whole wide universe.

Aria’s bone marrow needs to come back.  She had another biopsy on Friday so we are hoping for some clues there.  Or not.  Whatever 😉

Just after I published this post, I read my sweet friend Lindsey’s blog, she posted these verses that pierced my soul.

2 Corinthians 4:16-18 (New Living Translation)

¹⁶ That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. ¹⁷ For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! ¹⁸ So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.

It was discharge day yesterday.  The team gave us the opportunity to leave or stay another night.  They switched Aria from an IV ABX to an oral ABX and that combined with another oral med she is on can cause irregular heart rhythms.  So she had to have an EKG that afternoon and then another one at 7am today.  So it made sense to stay another night rather than just have to troop in again in the morning.  Plus she had an appointment with the dermatologist at 10am so we knew they would discharge us first thing.

Unfortunately her daily labs showed that her potassium was really high, which can cause big problems for the heart, thankfully an EKG was already scheduled which came back clear.  And her bilirubin, which has been high for a few days keeps climbing.

After a bolus of IV fluids her potassium was still high this afternoon.

There were a bunch of differenct theories thrown around, thankfully the major and concerning one was ruled out.  But as things sit tonight we have NO IDEA what is causing these issues.

There was talk of home tomorrow but I seriously doubt that is going to happen given these new issues.

Aria said this morning ‘Uh-oh, what time are we going home?’  Asher said as he was getting in the car after daycare ‘My sister be home when I get home’  I totally kicked myself for telling them home was on the horizon but they both took it pretty well.  Aria listed off a bunch of things she likes about hospital and Asher asked to go to McDonalds.

Hamish and I are pretty gutted.  So much for not getting our hopes up!  Tears today.  Crying out to God.  I feel like things are unraveling and we are just completely losing control of this whole situation.  Which we are of course.  I don’t know what God is doing.  I really don’t.  It takes all my strength to hold on, to keep going.  When will this end?  How will it end?  It will end.  He will complete the good work He has started.

Tomorrow will mark 7 weeks for this admission.  Technically she was discharged, for a day, before being readmitted.  That that was probably more stress than it was worth.

Tomorrow Aria will be on full feeds!  Her output is back to base line.  Like before Norwalk baseline!!   I thought this day would NEVER come.  Actually I did because I felt God was going to restore her bowel but the day seemed unobtainable at times.  It has been 5 months!!!

Tomorrow, it is planned today, that Aria will be discharged home.  This has seemed unobtainable at times.

Today, please storm the heavens for us that God would be willing to discharge her and KEEP HER HOME to allow us time to recover.

Today we still don’t have answers to the many questions about her current condition.  This is really tough.  There are serious and minor issues pending and no easy way to get answers.  Still God, in His wisdom, has not revealed them yet or may never.  We reconcile our will to His.

Yesterday we started a drug that should bring back Aria’s ANC.  We pray that God will bless it!  And bless Aria as she receives it, it is a shot in the leg 🙁 And bless us as we have to give it to her 🙁

Today we hit up the team for a report on where we should be settled on the concern-o-meter. From Very concerned to not at all. The consensus is that we should be just plain old concerned. If Aria has fungus in her system, which is one of the theories on the plate, that is quite a big deal as it is very hard to get rid of without a well functioning immune system, something Aria doesn’t have at the moment. So we wait to see if we get some answers this week as to whether Aria has a fungus in her system.

At the moment I am putting the list of things that we don’t know about like this:
– What is causing her skin condition.
– What the nodules in her lungs are.
– What caused/is causing the bone marrow issues.
– What is causing/caused her dumping.
– When Aria will get home.
– What the final outcome of all this will be.

Now there are theories on most of the above, but nothing to hang your hat on.

The things that we do know are these:
– God knows all the answers to the above questions, and he has promised to give us strength to cope with and all answers to those questions.
– There is nothing that God cannot do if he wants to, including healing a fungus infested, immuno suprresed, two time multi-organ transplanted little girl.

I guess it goes without saying that we would like only good and easily solved answers to those questions, and would appreciate prayers for the same.

It was a dark stormy day in Omaha NE.  It was almost pitch black at 3pm and Aria was assuring me it wasn’t her bedtime.  But strangely enough the clouds had lifted in our little corner of Omaha.

Things had been pretty stormy since Saturday.  Both in terms of Aria’s health and our ability to cope with what has turned out to be an epic 6 week hospital admission.  Mothers Day was great though and Aria greeted me with hugs and kisses and presents.  Brad and Steph brought cupcakes!  It was a good day.  Thank you for your beautiful comments and love.

Overall Aria has been tired and grumpy and dogged with headaches and bad bad peeling skin. Honestly spending a day in a hospital room with a grumpy 4 year old is a test of patience!  Not that it was her fault really.  The first hour after getting Tylenol she was happy but it soon went down hill.

Fast forward to yesterday and she had spiked a temp (38.5) and her ANC was 400.  Chemo was off!  Frustrating!  Then she had her wee episode.  It wasn’t as bad as what happen the other week but there were moments of concern and drama.  It was not fun for her or my weary heart.  When she came around after they gave her a med to reverse the sedatives she said to me ‘my life is not fun anymore’.  Gutted for her.

Chemo was off again today, her ANC was 460 and it needs to be 500.  Please pray it will happen soon, we can’t even think about discharge until that is done.

But today Aria was a lot brighter and happier.  We were quite concern this morning with her headaches and a few other things, she was just looking off.  But this afternoon she was chatting and laughing and playing!  She did a full hour of school work!  I chatted to the teacher after and she said that Aria is definitely age appropriate in terms of her school work/kindergarten work.  That was very encouraging.  At least something is going right!

We are currently trying to get a dermatologist to see her inpatient.  Long story but that needs prayer too.

Last night my heart felt really empty.  I think I have lost that reassurance that everything is going to be ok with Aria.  Not that we have been told that or anyone thinks that but things are so complicated and unraveling.  Before they were easy, she either gets transplanted or she doesn’t.  Straightforward.  I actually asked God if He knew what He was doing last night.   It felt good to be honest with Him.  I think today He said ‘Yes’ and filled my heart.

Isaiah 40:13-14 (New International Version)

¹³ Who can fathom the Spirit of the LORD,
or instruct the LORD as his counselor?
¹⁴ Whom did the LORD consult to enlighten him,
and who taught him the right way?
Who was it that taught him knowledge,
or showed him the path of understanding?