2010 December - Aria MacDonald

2010 has been for certain the worst year of our life. Dr E commented recently and to quote her ‘2010 was a great year for you- both frightening and fabulous, weird all rolled into one’  So true!

But in the last days of December 2010 I feel that God has melted away the resentment I have carried in my heart thru out the year. The truth is it was FABULOUS! We saw a miracle, what a privilege! We saw love. We saw courage. We saw strength. We saw God himself and heard His voice.

This time last year Aria was on the vent, seriously ill from her liver disease. The team, clever beans, pulled her back. Thank you God!

Aria received her gift of life on the 6th of Feb.   What an amazing gift

She did great. But after 10 trips to the OR and weeks on the vent, the transplant had failed and we said it outloud

Mothers Day May 2010 Aria receives her second transplant.  Another beautiful gift, this time it was successful.

But not without serious hiccups. And dialysis

Finally Aria came home! And we had fun

There was a VIP guest post

She is as cute as a button. Just wish that P word would go away

So a few random posts in the vast collection.

There was some intense struggles and sadness, particularly as we said goodbye to two special little girls Almariah and Valeriana.   Forever in our hearts, always.  We can not reflect on this year without honouring these lives.

But we stand today thankful so thankful that Aria has made it thru this year when things looked so so so bleak for her.

May God be pleased to bless her in 2011 as He did in 2010.

LOVE to you all. THANK YOU from the bottom of our hearts for all the love and support!  Thank you to our family, your active and faithful support during our tough times is deeply appreciated.  Thank you to our Omaha friends!  We prayed for you and you are God’s gift to us.

Aria crashed out on the floor asleep!  This picture, taken tonight amazes me.  This is the little girl was standing up to sleep days ago, now almost flat and asleep in seconds.  To fast for me to get her to bed!

Coming to you live from……

HOME!!!

Aria is home and we are much more excited this time.  She is doing really well.  It seems surreal to see her walking around our house and laughing and exploring.  It has been awhile since she has had that energy.

The pulmonary Doc walked into her room beaming this morning and said ‘did you see her gases today- it is like she has had a lung transplant!?’  Her blood gases show her lungs are more effective than they have been in a long time.

Aria is on a bi-pap machine at home now.  She was on CPAP.  Don’t ask me what the difference is- I haven’t figured it out.  Whatever it is she is sleeping better and is waking up rested and happy.

Anyway, I will post a pic soon of the therapy that is helping her.  It is kinda funny and needs a pic.

We feel so grateful and happy that Aria is doing better.  The sleep study and possible surgery may still go ahead but the team are hoping Aria keeps improving.  Isn’t it funny how God closes a door and opens another?  We feel really grateful that the transplant team really stood with us and got everyone involved and worked hard to get a solution for Aria.  Whenever we said ‘Aria is not good’ they would say ‘we agree- lets sort this!’   Great stuff 🙂

Well I’ve just finished the first night shift we have done with Aria in PICU since she came in on Sunday. We have been staying late and coming in early since then but we haven’t been brave enough to stay overnight because of how terribly she was sleeping at home and the added interruptions of PICU life. However given the improvement she has shown with her breathing, and the need for us to enforce wearing her Bipap mask, I decided to stay the night and see how she was doing for myself.

Turns out she is doing pretty solidly. Aria got to sleep about 9.30pm despite cries of “not tired, not go sleep” up to the moments before she fell asleep, and slept through till about 5.30am. The only times she woke during the night were when the nurse or tech or respiratory therapist came in to bother her for something, and after each of these interruptions she fell straight back to sleep which was really great.

The big issue for the team at the moment is a steady deterioration of Aria’s blood gas levels. Her pH levels were going down and her co2 levels were going up which is not a good thing. Good news on that front is that we are thinking the Bipap machine is helping her as we took a gas after she had a 2 hour nap yesterday using it and it came back much improved. I am eagerly waiting for this mornings gas to come back so we can see if it worked the trick overnight too.

She is still having a couple of headaches a day, so we still would like to know what is causing that too.

All in all, I think Aria’s mood has improved and energy level increased these last few days which is a relief. We are still waiting for word on the sleep study but given her improvement the urgency isn’t so great.

Anyway, I think Aria is starting to doze off in her chair so its back to bed time for her.

Really pleased to report that Aria is doing much better today.  For the first time in ages she doesn’t have big dark circles under her eyes!  She is currently and oddly sitting at 100% on .5L of O2!  This is really good.  She is resting back and seems comfortable.  Had a couple of naps today and was able to settle well.  We went for a walk and bike ride around PICU and she played with her remote control car.  She laughed and giggled and was spunkier than I have seen her for awhile!

We have tried a couple of new treatments to thin and shift the secretions in her lungs and I think that it has helped.  To be honest I am not sure what the problem is.  Could be her narrowed airway or could be the dodgy lungs or most likely both.  So ready for winter to be over, all this drama started with winter colds.

Unfortunately her kidneys are not happy right now and she is a bit dry.  Have increased her fluid but hoping she is able to pee it out and it doesn’t build up.  Her legs are looking a bit puffy today.

Anyway thanks as always for your love and support.

We were elated late this afternoon when Childrens rang to say they had a cancellation at their sleep study clinic TONIGHT!  YAY we thought- answered prayers!  Praise God!  Finally this sleeping issue would be studied and analyised and the surgery done at Childrens to fix it!!!!  Lets pack our bags we are off!!!

In case you are not aware, Aria is treated at the Nebraska Medical Centre, a large multi disciplinary hospital for adults and children.  The main childrens hospital is called Omaha Childrens and it where most peds hospitalisations and care is done.  They are completely separate hospitals.

Also, America is run by an insurance system, rather than by the government.  We get asked a lot of our ‘insurance card’  We don’t have one.  Aria care is covered under a contract between NMC and the NZ govt.

Not wanting to be asked for an insurance card at Childrens Hamish wanted to check the finance side of things was sorted.  We give our respiratory supplies from Childrens so we didn’t think it would be an issue.  WRONG.

We assumed all care was covered under the contract but any care Aria receives outside of the walls of NMC needs to be ‘pre approved’ Insurance speak.   So we had to decline the opening and now have to wait for it to be approved by the NZ Govt.  Which of course they will do, without doubt.

We were really upset and so hurt.  We prayed hard hard hard for that hour while all the discussions were taking place.  Please God overrule!  Please don’t let Aria suffer until the 19th.  We believed He could, we KNOW He can.  Why didn’t He?

Funny, that VeggieTales story I mentioned yesterday really spoke to my heart about the same issue (obviously God was preparing my heart for today).  Why wouldn’t God want a Christian Disney?  Why wouldn’t he want these amazing talking vegetables who impact the hearts and minds of children to grow and take over the media world, winning souls for Jesus?

Why didn’t He make Aria’s first transplant a success?

This is the answer to the questions with no answers

Isaiah 55:8,9

⁸ “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
⁹ “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

So once again we hold on to the fact the God has the VERY best in mind for Aria.  Our ways do not reconcile with God’s ways and we are obviously sad and disappointed.  This sleeping, breathing, headache and blood pressure feels like a heavy burden.  Ok- yes I know, we have done worse, I get that.  But it is still hard regardless.  We box on in faith.  God is still good.

….PICU.

Ok so this isn’t live but desperately trying to lighten the tone of the day a bit.

Hamish and I admitted defeat this morning and rang the team to say ‘we are bring Aria back’.  They said ok go straight to PICU.  So here we are.

Aria was doing all manner of strange things last night.  Getting out of bed, pulling her mask off, pulling her nose noodle out.  Well there is confusion about how the NG tube came to be out but it was out none the less.  All of this stuff was so strange.  She got little rest and woke up groggy and headachey.

So what do you do when your kid won’t lie down and falls asleep standing up and leaning her head on the bed?  You cry and your heartbreaks again at her tiredness (and yours) and your complete inability to put your own child to bed for rest because her little body simply doesn’t allow it.

Was she being naughty?  No she wasn’t, we are sure of it.  She was just positioning herself in a way so that her body could get maximum air.  But standing up and sleeping doesn’t work.

So we are back and she is currently sleeping.  Have tried a medicine to thin her airway mucous and that seems to have helped. But it seems like there is more work to be done to get to the bottom of all this.

It is quite hard watching Aria be so tired and listless all the time.  It is like the life has been sucked right out of her.

I have spent her sleeping time researching and being deeply moved by the story of Phil Vischer, creator of VeggieTales.  It started out of curiosity when the Bullis sent me a link to the story.  Finally got around to watching it and reading thru THIS and also watching the three parts of THIS.  It appealed to my business interest but more importantly my heart.  Read if you have time.  Our plans are not always God plans.  I have a lot of plans.

I plan on sleeping tonight, I hope Aria does too.

Christmas ’09

Curly fries and cheeseburgers from the hospital cafe.  The word yuck comes to mind!

Christmas ’10

Roast lamb, garlic and rosemary smashed potatoes, roasted baby carrots and steamed asparagus.  At home!

Wish we had gotten a better picture of Aria but you can see how different she looks.  Last year she was dying and this year she is living!

We had a nice day, opened presents and ate way to much!!!

It was coloured with disappointment however.  We were hoping Aria would leap out of bed, full of beans this morning but alas she did not.  All day she was tired and complained of headaches.  We’re onto her third dose of pain meds today.  There was such a stark contrast between her and Asher today.  He was full of life and excitement and she was tired and sad and not interested too much in her presents.

So we’re a little sad tonight.  Our friend Matisse, whose tenth birthday it is today, is still battling rejection for her new intestine.  Still completely positive that these organs are hers but our hearts hurt for a journey our friends are walking that is far to familiar.

Our hearts are with our donors families and our friends who have lost their children this year.

Oops- this wasn’t the merry christmas post I was planning!  Well that is life, it isn’t always a box of fluffy ducks but we’ve got to claim victory for what we do have.

Happy Christmas!

This isn’t the first time Aria has escaped hospital on Christmas Eve.  Yes!  She is home in time for Christmas and that is really nice considering we weren’t expecting it at all.

The verdict is is that we have found the cause of Aria headaches and sleeplessness.  We are really excited about that.  I don’t think we can quite wave the victory flag just yet but perhaps a few more days we might see how the new treatment is working.  Since starting the bipap Aria has only complained on headaches twice.  The second time was this afternoon and we sent her to bed for a nap and it is now 5.30 and it looks like she is down for the night.  Finally it seems she can rest.

This is a pic of her today with her new mask.  It looks awful and covers her whole face but she tells us that she likes it and she falls asleep quickly and most importantly she sleep solidly.  We skyped with the family this arvo and her door was open and she slept thru the whole thing.

Merry Christmas to our NZ and OZ readers.  Hope you all have a blessed day.  Can you believe that God came down and was born in a stable!?  I guess some can’t and don’t but we do.  Sounds just like something God would do, humble himself to our level even though He is God.  Wow – He didn’t need to do it.  But He did.  Born that man no more may die.  Awesome.

We got a nice surprise this morning when the Pulmonary Doc came in and started talking about being for Christmas!  I was a bit taken aback but she was convinced that Aria could go home if we got the BiPap machine for home sorted.

So tonight Aria is trailing a home machine in the PICU and hopefully it will go well and we can get home on Christmas Eve!  She did ok on the hospital one but the mask wasn’t very ideal, thankfully the home health company brought a bunch to try and I think we got the right one.

She seems much happier today, still napping a lot which is a good thing.  Hopefully another decent nights sleep will help her improve.

Anyway Merry Christmas!  Hopefully our next update will be from HOME.

This evening Aria went down to the OR for a scope of her upper airway.  The long and the short of it is that her airway has narrowed and scarred and has diminished to about 50% capacity 🙁

In some ways it is nice to have an answer as to what is likely causing her sleeping and breathing issues.  But now we have to decide what to do about that info.  The ENT doc wants to get her a sleep study at Omaha Childrens ASAP.  But apparently the next appointment is mid Jan ’11.  I think he is hoping to pull some strings tomorrow and get a closer appointment.

If the sleep study does indicate she is having ‘obstructive events’ in her sleep there might be another trip to the OR to hopefully remove the scar tissue and a balloon inserted to expand the airway.  Or maybe try a CPAP mask on her at night to see if that helps her.

Also today we had big problem with her BP.  It was in the 160s/85s today!  There was talk of moving her down to the PICU sooner but thankfully it comes down with her meds.  So they changed her BP meds to Q8 and that seems to keep it managed.

Currently Aria is in transit back to the PICU.  Apparently she has been charming the nurses down in recovery, sounds a little funny.  She has been a big trooper thru all of this, even letting me leave hospital for an hour to pick up Hamish and Asher while our car was in the shop.

Officially the MacDonald’s will be spending Christmas in hospital and likely in the PICU.  Stink.  They wouldn’t discharge her home until this issue is sorted because it isn’t safe.  That’s ok with us.

I have decided the celebrating Christmas is a blessed and wonderful thing.  It is a perk of life.  Like icing on the cake of life.  Food, presents, home and fun times with people are all good blessings from God.  But there are many many people who will not enjoy this perk of life.  We will be one of them, although this year, now we have an apartment and a car and a kitchen we will celebrate later.  God is still good and just because we won’t be munching on the roast lamb I had planned doesn’t mean His gift of His Son is any less!  It doesn’t have to be the 25th of Dec to celebrate that!  Still our hearts hurt a little and we wish we were home but we box on 🙂