2010 March - Aria MacDonald

The plan for tomorrow is that we will try extubation again first thing in the morning. Now there are other factors that might delay it, but that is the general plan.

It brings on a mix of emotions, obviously to be free of it would be neat, but there is also some nervousness about it. There is the question of how she will cope with it, and also about how she will respond to having nasal prongs in. Hopefully everything goes smoothly and we will be able to share with you tomorrow night that she is free of the vent.

Today has been a busy day for Aria again and she has been a little upset with the nurses and doctors because of it. As she is on pretty low sedation at the moment she is aware of most everything going on and can express her displeasure.

The biggest thing done today was a biopsy of her bowel, just to check that everything is settling in there ok and there isn’t any rejection occuring.

We’ll keep you posted on the vent, and we’d appreciate if you could keep on keeping her breathing in your prayers.

Colour us surprised.

They decided to do another contrast scan today because of Aria’s temp spikes yesterday.  They put contrast top and bottom, thru the NG tube and the stoma.  We were really surprised when the results came back improved.  There are fistulas forming, don’t ask me what those are but apparently they are good.

Aria’s temp was normal overnight and her heart rate was better.  It has popped up a bit in the past couple of hours but it is improved regardless.

AND there is talk of exubating her tomorrow!  She has done a 10 hour sprint on the vent today and it has gone well.  Perhaps she is ready?

So things are looking up which is great cause yesterday was really tough going.  I think Chippie was kind enough to not only allow us a hopeful dream but also a little outlet for some emotion that needed to leak out.  Welcome to the strange world were tears are positive things and bring you forward.

So many people have done and continue to do amazing and wonderful things for us.  Of course not all of them make the blog, Chippie’s did.  But there is a lot of people on Team Aria.  I imagine you all in my head wearing purple tshirts with Team Aria written on them.  Cheesy?  Maybe but a nice thought.

Deuteronomy 31:8 (New International Version)

⁸ The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Discouragement would be the word of the day according to the surgeon at rounds this morning.

Aria’s temp, heart rate, bilirubin are all up.  39.3, 150 and 8 are the numbers.  21 is the white cell count which is staying the same which is good.  The infection continues in her little body.

They are going to try some clever things with with her wound to try and get it to drain.  The goal is to avoid the OR.

Right now as I sit here I can’t imagine a time where that bowel doesn’t have a hole(s) and that wound is fully healed.  I can’t imagine starting feeds and Aria being infection free.

Hebrews 11:1 (New International Version)

¹Now faith is being sure of what we hope for and certain of what we do not see.

The kids got a package today from NZ.  I sat with Asher and opened his which was a book about a lion who likes to be like his Dad.  Hamish sat with Aria and opened hers which turned out to be providential.  Aria received a little book from her mate Chippie.  To this day nothing and no one has made Aria laugh like Chippie the cat has, I think there is a youtube clip of it somewhere.

Hamish read the little story to Aria as she lay and focused on the pictures and nodded and followed along.  Turns out that little book was written in the island paradise that is Waiheke and was about Chippie’s summer adventures.  Aria has visited Waiheke on happy occasions and always had a great time.

Our current situation in cold land locked Omaha couldn’t be further removed from our visits to Waiheke Island with a laughing happy Aria.  This was not lost on us as Hamish read the story, pausing at times to hold back the emotion and clear the eyes of tears.  Just as well he read it, I never could of made it.  I can barely manage to type this without blinking back the tears.  It was something wonderful in the midst of a tough day.

Faith tells me to hope Aria will one day be back to Waiheke Island full and restored, happy and laughing.

Thank you for the hope Chippie and family.

Yay I like writing good news posts

Proverbs 25:25 (New International Version)

²⁵ Like cold water to a weary soul
is good news from a distant land.

We got word today that our accommodation funding has been approved from our local DHB.  We are so happy.  We have signed the lease for our new place on Monday so we are very pleased to get word.  We move on the  14th of April into our new condo.

I can’t remember what I have shared about this place.  But is it perfect in many many ways.  First up the price is only $3 more a night than what the Govt is paying for our room at the Lied (which is cheap hospital/hotel rates).  The price includes all utilities including broadband and phone.  Yay for not having the hassle of setting all that stuff up!  It is also fully furnished including linen, pots, pans plates etc etc.  Washer and dryer. Yay for not having the hassle of buying stuff and spending Trust money or having to sell again.  Lots of space 1700 square feet.  Very safe with gated entry and access code to get into the building

It is a really beautiful place, new and nice.  Perfect and we are so so thankful.  The only downside is it that is 20 mins from the hospital and not close to Bellevue where Carol and Cordell are.  But we do have two lovely families close by who we know well- yay for friends!  And also another hospital family in the complex too.

We may have to get a few things and will buy Aria a new bed and mattress but all and all I think it is a big money saver for us and the DHB.

So praise the Lord, this is truly an unexpected answer to prayer.

Aria did 3 90 mins sprints on the vent today and did well all three times.  Unless they are messing with her and she holds her breath- funny girl.

Unfortunately this post can’t all be sunshine and roses.  She is battling cellulitis and it isn’t clearing after 2 days of ABX  so the fever and high heart rate continue.  There was talk of the OR again by the Infectious Diseases team but transplant said no.  There was some misunderstanding about the course of treatment today so we are hoping tomorrow things will be clearer.

Please pray that the bacteria in her body will be killed and this hole in her bowel will close up.

But yay for answered prayer!

Aria had her second day of sprints today. She had mixed results.

The first attempt we had this morning did not go particularly well. They let her initiate the breaths herself but Aria decided not to breathe. After trying to prompt her to breathe and giving her some support it was decided that she needed to go back onto the vent which was a little discouraging to see. The theory that was floated is that some medication she received prior to the sprints starting may have left her too sedated to get going with her breaths.

This afternoon however we went for heat two and results were better. Initially Aria responded quite similarly to this morning, not initiating breaths. The respiratory nurse put her back on the machine to get Aria oxygen levels back up and we discussed why she wasn’t do as well today when she did great yesterday. While we talked the respiratory nurse took the support away again and Aria kicked into gear slowly but surely and went for the full 90 minutes she was scheduled for, YAY Aria. We only had one little patch where she stopped breathing when the nurses were checking her vitals. We came to the conclusion that when she gets ‘messed’ with she holds her breath and forgets to kick into gear again. I guess when you have been breathed for, or at least got a lot of help with your breathing your body might forget how to do it by itself.

In other news regarding Aria, the contrast study wasn’t quite as successful as we initially hoped. None of the contrast was going down her bowel, it was all leaking out from a spot they can’t operate on. Good news is that the drains she has in place cleared the majority of this from her abdomen, bad news is that it means intestinal feeds are on hold for a while. Seriously it feels like, one step forward, two back, two forward, one back….

As always, your continued prayers are coveted and appreciated.

Today we are happy.  They decided to start Aria on ’sprints’.  Sprints is were they turn off the breathing support from the vent and Aria initiates all her breaths herself and then the machine comes in with the air she is asking for.   They tried this for half an hour and she did great!  Her breaths stayed at around 30ish which is normal.  If she was struggling to breath she would of gone higher (like when you run and you breath faster) to like 60.  So they will try again this arvo at 2pm for 45 mins.  Then a hour later tonight and then 2 hours three times a day tomorrow.   And then hopefully remove the breathing tube fully.  So we are really really happy and praying the other sprints go well.

In other nervous news her temp, heart rate and white cell count is up today Her temp peaked at 38.3.  She has a patch of hot red skin on her pelvis and it might be a little skin infection from the fluid build up.  So we asked to the team to move the Cat scan forward today and they agreed.  Worst case it could be another leak in Aria’s bowel that is causing the temp.  We know there is a leak but everyone is hoping it is small and will heal without a trip to the OR.  She is having some contrast now down her feeding tube into her tummy and bowel and it will leak out and show up on the xray.

So praise and prayers today for sure.

Thank you for your beautiful messages and encouraging words.  This is the wonderful thing about this blog and a reminder that there are many people caring and loving and praying for Aria and our family.  Thank you.

Update:  nurse just took Aria’s temp and it was 37 !  good news.

Prelim results from the Cat scan are good.  We could see the contrast coming out her stoma and not out of the drains.  The person who did the scan said nothing ‘jumped out at her’.  This is great because last time even Hamish and I could clearly see all the contrast leaking out of the top of her bowel into the abdo cavity.  But we wait for official word from the transplant and ID team.  maybe maybe maybe we can start intestinal feeds soon!

…..it is the smell of fresh air.  This was a little joke I heard while tidying up today and the cartoon network was on in the background.

Asher and I are getting out and about.  We went to the Omaha Zoo today.   It was Asher’s third visit and my first.  Our friend Elaine has been taking him and today I decided to tag along and get out.  It was really fun and Asher had a great time running around with her two boys who are really kind to him.

The highlight was the gorillas, wow such amazing creatures.  I can’t remember if I had seen gorillas before at the Auckland Zoo.  But they were right up close and I was just struck by how truly big and powerful these animals were.  God did something truly great when he made these and all animals.

Aria is ok today.  Nothing new to report.  I guess we see things differently to the doctors and we try to get on board with their thinking.  For them a temp of 37.7 isn’t worth worrying about but for me I feel uneasy about it.  I still think there is a leak in her bowel and so do they.  But again they say it is small and I feel uneasy about it.  So a cat scan with contrast put into her feeding tube will show on Wednesday what is going on.  Everyone is hoping that nothing major is found like last time.

In better news her right diaphragm has dropped a bit telling her that we are heading in the right direction with getting off the vent.  They are weaning her vent and making her do more work to breathe by herself and she is doing well with that.

My sister is visiting in May and I am really looking forward to that.  Things have been super hard in the past month.  Perhaps the worst in our lives.  Maybe the first month of Aria’s life was hard too.  But at least we had our family and weren’t in culture shock.  Plus we had a brand new baby, yay!  Life certainly has lost its spark and I feel pretty unhappy.  Did I share to much?  Maybe.  If anyone has some verses to share about life and being down please post, would be happy to hear from you all.

Life will get better, dear Jodee reminded me today.  Thanks Jodee.  This is just a season of hardness and pain.

ANYWAY enough gloomy gus from me!  Love to you all and thanks for walking with us.

Today Asher and I went out to the children’s museum here in Omaha thanks to our friend Stephanie who picked us up at 1pm.  I must confess to being pretty nervous all morning about going out.  Most times I go out I have my safety blanket Hamish with me and I don’t go to new places very often, only the supermarket and stuff.  Living in a hospital all the time it is easy to stay here all the time because it is safe and familiar, yet it at the same time, it’s tough going here.

ANYWAY we had a great time, it was a super fun place for adults and children too.  We spent about two and half hours there.  They have yearly family passes that I think we might look into.   Asher had a great time and ran from place to place.  So many things to do, it kinda reminded me of a cross between Lollipops and Motat.  Stephanie took some photos so there will be some pics so on Facebook.

I thought a lot about Aria when I was there and how much she would of enjoyed it.  Thought about the cousins too and how all three of them would love it.  There is a little supermarket there with working checkouts and shelves with grocery items.  I could see her pushing around the little kiddie sized carts.  But it will be awhile before she is able to visit a place like that because of her suppressed immune system and all the germs BUT we will take her one day.

Aria has been more awake today, which made for a tricky and somewhat demanding afternoon for Hamish.  She points and wants lots of things but because she can’t talk it is tricky to guess what she wants.  But she is doing well.  The highest temp has been 37.5 and her heart rate is in the early 100s.   Her white blood cell count is fine and even came down a little bit.  There was also another blood test, that is a precursor to the white blood count, that dropped down heaps.  So all signs point to the change in ABX has been a good thing for Aria.  And the pee is flowing about 30mls an hour which is ok.

Thanks for checking in

Aria’s little body is doing ok today.  Although we had some news this morning that wasn’t particularly good.   She has been growing a bug in her abdominal wall called pseudomona.  Today we are told that it has morphed into a ’super bug’ and is only resistant to a handful of ABX.   And those ABX are pretty hard on the kidneys and you normally have to treat with two of them.  Great, her kidney are already mad because her progaf/tac/FK (her anti rejection med that has three names) levels were too high.  So thankfully the bug was sensitive to a ABX that isn’t quite so hard on the kidney and they have started her on that.

So Aria really really needs to avoid the OR and have no more bowel perfs because this introduces more bugs into her body.  ARGH!  Thankfully four weeks on she isn’t showing any sign of rejection, the window is always open but is more open in the first 6 weeks.  So infection seems to be her battle.  Plus the vent issues.

Today we had a ‘care conference’ which was kinda weird because I don’t think there would of been much to say if I hadn’t asked lots of questions about feeding.  Hopefully next week she will start on feeds.

Anyway there is more to say but I am really tired.  Thanks for checking in on Aria.