2010 May - Aria MacDonald

Well we are glad to tell you that Aria’s last 24 hours have been better than the previous 24.

She has been pretty stable since the drama of yesterday. Her numbers are improving, the pH of her blood is creeping up, the CO2 content of her blood is coming down, they aren’t ‘normal’ yet but are no longer in the critical area.

She has also gotten off one of her blood pressure medication, and they have given her a ‘holiday’ from her paralytic. I haven’t seen any movement yet but she is pretty comfortable off it. They have also reduced the amount of oxygen they are giving her a lot which means she is needing less help than before.

There has been talk of dialysis today as she is very waterlogged and swollen (carrying about 6kgs of water) but they are going to leave it for today.

We still don’t have any definitive answer as to what has caused this BUMP, we have received one positive culture back from a swab they took inside her abdomen during surgery. It is probably a psuedomonas bug but they won’t know how nasty it is for a while, and even then we aren’t sure if that would cause all this drama.

Anyway we are grateful for the prayers that have been said for Aria and grateful that Aria is showing signs of improvement.

We aren’t out of the woods with this one yet but at least it doesn’t feel like the sky is falling anymore.

It is always difficult to know how to break bad news about Aria and what we want people who read this blog to walk away thinking after reading these bad news posts cause we aren’t even sure ourselves.

Aria has taken a turn for the worse.  Quite quickly and quite unexpectedly.

She is unstable.  Her vent setting are very, very high and her blood pressure is very low and she is on a lot of medicine to keep it up.  They took her to the OR this morning to rule out any holes or infection since they removed her drains yesterday.  The surgeon came back and said everything is ‘pristine’ in there.  Great news- we have never got a good report from a OR visit.

The current thought is that here is a virus or bacteria of some sort in her lungs.  We are hoping for a bacteria, although not resistant Pseudomonas.  If it is a virus it is going to be a long, long recovery period, weeks to months.

Her gases came back improved just now which is a great sign, they have been terrible since midnight.  Her blood pressure is still up and down.

She is paralyzed with medication right now so she doesn’t fight all the treatments she is getting.

It has been a tough morning.  It wasn’t a code situation but her heart rate dropped quickly along with her BP and O2 stats.  The crash cart was next to her door and the chest compression board was under her.  So we stood in the hall and watched the people pile in and work their cleverness.

This team is amazing, we have full confidence in their abilities and importantly their care and fondness for Aria.  The nurse that had Aria last night worked a full 12 hour shift and still stayed an extra 2.5 hours this morning to help.  Dedication is the theme of the staff here.

Is Aria very very sick?  Yes she is.  Will she recover?  Yes very, very likely.

Thankfully Alex is home with Asher which allowed Hamish and I to go in to the hospital at 6am.  For me I feel very, very strongly that God has laid on my heart a peace that Aria will live AND at the same time I knew this was coming.  I knew there would be a bump like this.  A peaceful knowing, a revealing from God to prepare me.  Both of us are very very sad this has happened and trying to get through it.

Please pray for Aria and the diagnosis.  Pray she may heal quickly and may have a summer enjoying Omaha.

Aria is on TV in NZ this Sunday 8.30am channel one.  The second part of her story covering the rejection and her fight post transplant.

*****UPDATE******

Aria is still having some bumps with her 02 stats, heart rate and breathing rate but we have had some significant wins today.

Firstly ARIA HAS NO DRAINS!!!!  All of her abdominal drains have been removed today because there is no excess fluid in her abdominal cavity.  This is great news and her catheter that drains her urine should be removed tomorrow too.  She is losing tubes!  This is progress.

Just spoke to the surgeon and he is still keen to start feeds tomorrow providing no vomits overnight!

Her wound is look great, she is stitched up and there are staples holding the flesh together.  In places the skin has healed and fused together!  It looks nice and neat and not open like before.

Remember the surgeon said it would be a miracle if Aria didn’t go back to the OR at least once after transplant.  Well we are day 11 and there hasn’t been one trip!  Not one!  The further out we get the more we can start waving the victory flag.

Aria managed some PT to today and the therapist was excited to see and feel that Aria is getting stronger every day and able to complete her exercises much better.

(more…)

Today we have been a little concerned about Aria. Her heart rate is elevated, her breathing rate is elevated and she is still having her occasional spikes of temperature. All the other numbers say she is doing well but today it just feels a little off.

We found out this morning that the positive blood culture they got back is most likely a contaminated result so that eliminates that as a cause for her fever. The team then decided to give her a CT scan to make sure there wasn’t any pockets of nasty fluid that could be causing them. We were also weary of the scan showing leaks as the CT scans from the last transplant looked really terrible, contrast (the fluid they use to see where things are going) was EVERYWHERE but the bowel. We took her down after managing successfully to get a relatively large amount of fluid through her teeny tiny stomach without it coming back up. When we got to CT she got some intravenous contrast too, which is great because it means her kidneys are doing well enough to cope with it (which they weren’t last time).

The CT results were great, no leaks, no collections, do drama, PRAISE GOD! 😀

So the new theory is that her lungs are causing the drama and they just need to get stronger and they need to have the junk that may be sitting in them cleared out through good strong coughing and treatment.

We are glad that nothing HUGE has come up yet and appreciate all those surrounding her with prayer.

Firstly I will get this out of the way.  Our honeymoon is over, Aria has spiked a temp to 38.4 today and 38 yesterday.  So they have taken cultures etc.  Yesterday her WBC was 7 which is AWESOME and down again today to 6.4 so all good.

Aria and I had a great day yesterday.  She didn’t sleep much, she was so busy.  There is honestly so much to say.  We did crafts and painting.  She found some sparkley letters and peeled off the back and stuck them on paper and I wrote down the names of people she knew, Nana, Josie, Dr E, Green Dolly, Nana Rose and of course A for Aria.  She gave me a smile when she thought of the person we were talking about.  It was really cool to see her remember people.

 We saved these ceramic things for her to paint when she was really sick knowing she would do it one day.  That day came!

She made 5 butterflies which are proudly hanging from her ceiling.

She asked me for the torch/flashlight and she spend ages shining it all around and thinking it was funny.

She has two balloons, one new one from Carol and Cordell and sadder looking one which has lost it’s air that Nana brought in Jan, but she loves it so we don’t throw it away.  But I pretended the ballons were two doggies George and Kaylee (our friend Rebecca’s two dogs who Aria really likes from a distance!) and they were taking Mummy for a walk- she thought it was SO FUNNY and did little belly laughs.

The thing that struck me most was when the nurse came up to the side of the bed and Aria stuck out her finger automatically. The finger was for ‘finger bities’ a prick on her finger for her 4 hourly blood sugar test. It must hurt but Aria is so good at helping with her various cares. It wasn’t actually time for a ‘bite’ but it amazed me at how willing she is to embrace her world.

Aria is still doing very very well.  So well.  On paper she looks great.  Today she is peeing heaps, those kidneys are going great guns.  She is about 20kgs which is about 5 kgs heavier than she should be due to all the fluid on board.  But they decided they didn’t even need to give her medicine to help her pee (lasix) because she is peeing so good anyway.

No temps- nothing- perfect.  Alway in the 36s- not to low and not to high.  White count is normal !

Stuff is coming out of her stoma, bile and gas.  Good signs although not getting that excited cause we have seen that before.  She is still draining out of her NG tube some stomach contents, they will hopefully cap the tube next week and everything should go south.  The drain from her abdomen are drying up too and only a bit of blood and no stomach contents- hopefully meaning the bowel is hole free and not leaking.

Most importantly Aria is smiling without us having to work to hard for them.  She seems SO MUCH BETTER, like a new kid.  I told her Aunty was coming to visit next week and she smiled and nodded her head and held up three fingers.  She remember that it took three plane trips to get here!  Amazing memory Aria.

Because Aria is doing so well it is hard not to start looking into the future and wondering- when will our life stop sucking?  Did you know we haven’t lived as a family for almost 6 months.  I miss Aria.  Right now I can not imagine a day when she will be able to breathe on her own, talk and walk and be fed thru her gut and SLEEP AT HOME.  Every night when I leave it just breaks my heart so much.  I just want to sit and cry.  But what do I do?  I have a husband and son who also need me.

I just feel like our life is LOSE/WIN.  I ‘win’ a night in my lovely apartment with my husband and son but ‘lose’ a night with Aria.  I ‘win’ a night with Aria and ‘lose’ sleep and the comforts of home.

One of the major downsides is travel.  If the person at home wants to get out in the car on their non hospital day then they have to drop and pick up the other person.  The person in hospital needs to leave before Asher’s bedtime and hope like mad Aria is asleep so your heart doesn’t crumble into a million pieces by leaving when she is awake.  A second car would solve this problem but the expense and having to resell makes it a hard decision.  ARGH- see what I mean about Win/Lose?

Anyway for those who pray, please pray for healing and that Aria will be HOME soon.  I know there is still months ahead of us but God can do anything!

Today was probably the best day with Aria that I have had since transplant. Although Aria has come through transplant to this point with flying colours, she has been pretty restless and intense the first three days. There was some nice moments in the day but they have been pretty demanding and draining on us as parents. In those three days we have spent with her she was only sleeping for about 30 minutes in a 12 hour period.

Today she slept more and was more relaxed and playful in the periods in between. It was a nice day for her and a really enjoyable day for me.

There were a couple of real highlights:

Aria getting a bath, holding up the different parts of her body that needed cleaning then, wanting me to wash her hair and having her sit back with a smile on her face as I massaged her head (even when the respiratory therapist was ‘massaging’ her chest).

Aria dancing to the song Dr Knickerbocker #9 on the Wiggles ‘You make me feel like dancing’ DVD.

Aria doing great during her physical therapy session, touching her nose and doing high fives with both hands and doing some bottom jumping. Then throwing the ball with both hands at another ball and then being sneaky and throwing it to the physical therapist who was watching.

She is doing really good, as good as we could ever have imagined. May God be gracious enough to keep this going forever…..

So a video must say much more.

Will be brief because I am super tired with a big day with Aria.  She is a rock star.  Rock star on paper, lots of grins on rounds today and a rock star with playing playing playing all day.

Here is a video, you can see her clapping during her music session and then she gives the thumbs up.  You have to watch carefully cause it is very quick.  She is doing so well.

This period is the honeymoon period according to the surgeon, there is hard stuff to come.  But we are enjoying the moment.  Thanks for your kind words on yesterdays post, I was kinda surprised as how much it touched people.  But thanks, nice to know this journey is touching others.

So we are ending day two post transplant.  To be honest it seems like it has been a blip on Aria’s social calendar and today she was back in business.  It is truly weird.  She was back to playing, stickering gluing, washing her hands for about an hour, playing with her wiggle baby.  She has roid rage for sure but settled down a bit later in the day.  No nap either except for about 25 mins.

Medically speaking things are going well.  Everything is good, no temps, heart rate good, WBC good too.

Ummmmmm yeah.  This it weird- where are the trips to the OR?  Where is the bleeding?  Where is the drama?  Are they coming?

I went back today are read thru the February 2010 entries.  We were so positive and hopeful and full of excitement.  I want to go back in time and give that Anita a gentle hug and say ‘Honey- it doesn’t happen, she doesn’t get off the vent and there are ten trips to the OR and the organs reject- this IS the worst time in your life’  I wouldn’t be mean to old Anita because I would tell her that she would be ok and her prayers would be answered and sit with her as she cried many tears.

It is like being torn between feeling like a panic attack and feeling like I am about to be punched in the face to being completely fine and chilled.  I was even planning to get my drivers license today, I finished studying yesterday but have a sore throat so stayed home and rested.

You see, we prayed many many times that God would take Aria home to heaven and spare her a 2nd transplant.  What kind of parent prays for her childs death?  The one who knows she would be better off in heaven rather than go thru the hardship of a 2nd multi organ transplant.   In a strange way it is the ultimate love of a parent, always I would rather experience the pain and know Aria is free and healed in heaven.  Still I must fight for her life knowing that only God could provided what she needs, I could not.  And He did because I begged Him to keep her here just as much as I prayed to Him to take her.  God said no to our prayers and yes to our begging so I now fully believe He will save her now and she will live.  And having prayed that prayer I do not fear her death, I have given her to Him fully and completely like I never have before.  Death has lost it’s sting.

It can’t be this easy, there will be a trip(s) to the OR.  There will be infection battles.  There will be drama.  Intestinal feeds won’t start on Monday, 7 days after transplant like they are suppose too.  It is like waiting to be punched in the face, I know it is coming.

Please God, don’t let there be trips to the OR, please kill those bugs, allow peace not drama.  Please let feeds start on Monday.  This is your journey- she is yours.

It is so easy that it is hard.

Well we are about a day into to Transplant 2010 v2.0 and things are going along alright.

The big theme of the day was Aria shrugging off any and all attempts to keep her sedated and then spending that time when she wasn’t sleeping begging for water.

This made for a particularly challenging day for Anita who had to balance calming Aria down and chasing the staff to see what else could be done for Aria’s sedation.

So far there doesn’t seem to be any major issues flowing on from the transplant. Some of her blood chemistry is a bit off which is probably causing the thirst and her urine output has slowed a bit which was to be expected.

We are really hoping the morning brings a new plan for keeping her settled and rested and that the thirst subsides and she feels better about the world. Please pray for this in particular.