2010 February - Aria MacDonald

Aria is watching the Little Mermaid for maybe the tenth time.  I think she just likes the TV being on.

Miss Aria’s heart rate is up and her blood pressure is down.  Feels like a bit of a set back really.  They gave her sedation last night which I am a little confused by because we are wanting her sitting up and moving to get some of that fluid out.

Starting to get frustrated that the breathing tube is still in.  Asked this morning if it might come out today and it doesn’t look likely.  We had hoped that today would be the day.  But there is fluid pooling in her chest and they don’t want to take it out.  It has been there almost a week.  A whole week since Aria has spoken and been able to communicate with us.

But the reality is talking isn’t as important as breathing- obviously.  And being that she has a lot of fluid in her lungs and all over her taking the tube out while all that fluid on board is not a great idea.  So we need to get that fluid moving by either getting those kidneys going or putting in a chest drain.  Sigh

Anyway hopefully things will improve soon.

Looks like that annoying breathing tube might go today.  I hope so.  If there is a possibility that Aria might go the OR tomorrow again, so there is no point taking it out only to have to put it back in again.

The cultures they took yesterday are still clear, that is a good sign.  And they are also testing the abdominal drain fluid for pee.  Her kidney plumbing might be leaking pee into her abdominal cavity.  So at 2pm we should get that test back.

Aria is sleeping today a lot, that is fine.  She wakes up when we do things to her so that is good.  She is still really puffy with a lot of fluid on board, although it is getting better.

And her bilirubin is 7.1 and decreasing at every blood draw!  7.1 times 18 = 127 for those kiwis in the know.  Great news, she is visibly less yellow.

Hamish and Asher have gone to the store to get him some PJs.  His size ones are around his elbows and his little arms are getting cold at night.  Then they are off to Chuck E Cheese!

I am starting to think and put feelers out about apartments/houses.  In theory Aria should be discharged from hospital on intestinal feeds and fully off TPN.  That is a concept too big to get my head around.  But lots of places have waiting lists so better to get started now.

The idea of setting up house again is rather overwhelming.   Hamish and I were joking we should get re-married so we could have a wedding and get all those helpful house setting up presents.  We haven’t really lived in the same house for since maybe November last year so it is almost like getting married again!!! But then we would have to organise a wedding- no thanks 🙂   But if God can provide us millions of dollar and those precious organs then He can totally take care of furniture and knives and forks!

Thanks as always for checking in on us!  Those prayers carry us thru each day.

….perhaps it would be better if she was asleep.

Today was another day of progress.  Aria went back to the OR and they did another washout and took cultures.  Unfortunately there still might be another washout, will have to wait and see if the cultures grow anything.  The surgeon said her new organs are looking really great and her bruised kidney plumbing is better too.

Aria is awake and doing well.  I really feel for her.  She has this nasty hard plastic breathing tube in her mouth and down the back of her throat, must be awful.  She can’t speak of course but she has made it really clear she wants it gone.  Such is our Aria.  She can say no and is trying to play with her toys and watch some TV with her one puffy hand..  She is still groggy and tired.

Her wound is amazing.  It is open because they keep having to open her up to wash her out.  But today we learnt that they don’t plan to sew her back up.  What!?  Yup the wound stays open and fuses together by itself. It is sewn up at the base so you can’t see her guts (!) but the flesh isn’t.  It is hard to look at actually, it am find myself feeling a little bit ill in my tummy when I look at it.

Sometimes I look at her and think ‘What on earth have we done to her’.  Which is silly I know.  Aria did not have long with us, the team here told us that she wouldn’t of made it to the end of the year.  And the two days prior to transplant she was really sleepy and the team was concerned.  We had no choice and where no other options.  But still it is desperately hard to watch her suffer and struggle.

Don’t get me wrong, she is making fab progress and once that breathing tube comes out things will be better.  Her colour is better to and she is losing the fluid slowly, peeing it out.  She is totally amazing I can’t imagine how hard it must be.

That is right, this morning at about 7am we got a call from the nurse looking after Aria saying that was awake and she wanted to see her mummy and daddy.

I rushed over and was so happy to see her turn and look at me when I came in the door and said hello. Everything was moving, her  arms, legs and head, she was a busy little bee. She is pretty frustrated though, she has all these annoying tubes everywhere and she is trying to get used to them and/or trying to get rid of them.

Her breathing tube may be removed in the next day or so, she has another washout scheduled today to get rid of some more bugs. She has been pulling and pushing the tape holding it in trying to make it more comfortable for herself. We have also been trying to explain to her that her Nasal-gastric tube is her new friend and will be with her for some time. She wasn’t so keen on that but she has stopped playing with it so much.

Her personality is still there in full effect, directing the medical staff to go when she had enough and making it pretty clear when she does and doesn’t want something to happen. She is pretty hard to understand when she wants something though. The tube in her mouth stops her talking so it is all waiving of hands and pointing with hands and feet. For all our sakes I hope she gets extubated soon.

We are very happy to have our girl back with us and are keen for things to keep progressing as smoothly as they have so far. Thanks for all the prayers and comments they are appreciated.

God has been very gracious to us many times in keeping Aria with us and he is doing great things in her and through her and for that we praise Him.

Aria is doing really well, we are so encouraged.

She is off a couple of meds today, dopamine being the major one.  Her blood pressure, heart rate and breathing is great too.  She is still over breathing the vent too.

Aria hasn’t opened her eyes yet but the arms and legs are waving around a bit.  When the nurses put eye drops in her eyes and she tries to bat them away.  They had to change out the vent machine and manually bag her for a bit and she didn’t like that at all.  So there were arms and legs going in all directions.

She is really really puffy and they gave her to med to help pee it out and her kidneys managed fine with it.

Her bili is dropping at every blood draw which is 6 hourly (or Q6 like they say here)!

So today some really solid progress.

The only bummer was that there is confirmed bacteria in her abdominal wall and they will wash her out tomorrow.  Her wound is still open so they can go back and forth.  I did see it today, it is pretty full on.  Not sure when they are going to sew her back up.

Anyway the nurse today was really awesome and took the time to explain lots of things to me and talk with me about stuff so I felt apart of things today.  It has been a struggle really not even feeling comfortable to adjust the bed but we are getting there.

Miss Carol came in today and sat with Aria while Hamish and I got out for a couple of hours.  Thank you Carol!  Ash was at preschool.  I guess Aria is asleep the whole time so it doesn’t really matter if there was no one with her.  But it just feels better knowing there is someone here.  It was lovely to get out, I haven’t been outside for almost two weeks!

Anyway hopefully more progress tomorrow!  Go Aria, you’re awesome 🙂

Miss Aria sleeps on.  Nothing to be concerned about I don’t think but she is sleepy.  The nurse have pinched her foot on occasion and she responses, I know it sounds mean but it needs to be done.  I just got interrupted mid sentence there because the nurse put her eye drops in and Aria stirred a bit and brought up her hand.  You know if Aria was awake there would be ZERO chance of getting eye drops in.

Aria is looking less yellow, her bibi number is 9, times by 18 and that is 162.  That is pretty good, hasn’t been that low for awhile.  I got a quick look at her eyes while putting in the eye drops and her eyes are less yellow.

Her heart rate is good, her BP is good, she is over breathing the vent.  She is still very very puffy with fluid, very feel for her.

Poor Hamish is really tired and I have cabin fever.  So Asher is off to preschool today and Miss Carol is going to take me out for a bit.  It is hard to leave but I feel like I really need to get out, haven’t been out since my birthday I don’t think.  And Ham will have a nap today.

I had an phone interview with Radio Rhema last night.  It was on the afternoon show yesterday and repeated on the breakfast show today.  It was evening here and after a long day in the PICU with Missy I probably sound like a real space cadet.

Loving this verse today

Hebrews 11 NLT

¹ Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. ²

Aria’s message has been and is being spread far and wide.  Hamish and I and everyone who loves Aria hoped for so many things with faith believing that they would come true.  We knew without doubt God could do this!  He has, thank you God, We praise you!

Aria is back from her third trip to the OR.  The surgeon said that everything looks good in there, all her organs looks great.  They washed her out and took some cultures.  Because her old organs were in such a messy awful state there was a big risk for infection.  So if the cultures grow anything then she will have to go back to the OR for a 4th time.

The transplant co-ordinator came by and dropped off Aria’s transplant gifts.  A soft toy liver, kidney, intestine and pancreas!  Complete with pens so everyone can sign them.  We will have to take a pic of them all, very funny.

Miss Aria is still really sleepy and we haven’t seen much life from her.  She is pretty puffy and it is expected to get worst!  The nurse cleaned out her mouth and she stirred and brought her hand up but that is it.  I really miss her, she such a fun girl.  We all do.

Asher came in and said hello to her last night.  He does this funny thing were he cups his hands around his face and says BAAAA!  to wake someone up.  He tried with Aria but of course didn’t understand why she wasn’t waking up.  And he waved goodbye and was confused with the lack of response.

Hamish and I were trying to figure out if Aria still had her belly button.  I asked the surgeon this morning on rounds and was relived when she showed me she did.  Isn’t that funny?  We thought maybe because they cut her right down the middle they might of gone straight thru it but they didn’t!  There is a really funny Vegie Tales song about having ‘no belly button’

Anyway Aria was on the front page of the Dom Post again today and on stuff.co.nz. Now is it Brad and Angelina, would much rather see Aria!

I have a interview with Radio Rhema today too at 9.30pm my time.  Minus 5 hours for NZ, to lazy to the do basic maths!

Aria is sleeping very heavily, so heavily in fact that they turned off all her sedation completely and she sleeps on without so much as a wriggled finger or a twitch of the nose.

They are a little concerned about this so at about 2.30am this morning we got a phone call advising that she was being taken down to radiology for a CT scan to make sure that there was nothing bad going on in the brain itself. Needless to say that we were concerned at their concern and we very relieved to hear a while later that everything was normal inside her brain. The current theory is that the drugs used to sedate her are backed up in her system due to things not working quite as they should yet and therefore once all the backlog clears she will come around.

Obviously we are very keen to see that as we want to know that she is alright and recovering but most of all we just want to interact with out little girl again. We miss her terribly, we are really looking forward to her telling us to “read book” or “go walk” or “wet hat”. Also really looking forward to telling her about everything that has happened and the amazing thing that God has brought about in the last few days.

Last night as I was lying in bed thinking about Aria and her lack of response I was comforted by this verse in Philippians 1;

“being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.”

While I’m pretty sure this wasn’t written specifically to apply to bowel transplants I do believe that God is doing a marvelous work of healing and restoration in Aria’s life and he will bring her through this.

So prayers would be appreciated that she would wake up, that the organs would all get going, and that there is no infection or rejection (our two biggest dangers).

The other thing to pray for is the surgery that will take place later today (about lunchtime) to clean up all the yucky stuff that is still sitting in her abdominal cavity, may God guide the surgeons as they work to ensure that infection would not come from within.

Today is superbowl Sunday in the US and it is late arvo.

Aria is doing ok.  She is pretty puffy with fluid at the moment which apparently is normal.  Her blood pressure, heart rate and temp were low today.  But with some new meds and a warming air blanket things have improved.

Dr Botha said that the next couple of days are going to be rough for Aria as her little body adjusts to the massive thing that has happened to her.  For example her weight has dropped from 15 to 11kgs from all the huge sick organs being taken out.  So we braced ourselves I guess for some rocky days ahead.

Her tummy looks completely amazing.  For so long now it has been huge and swollen and distended.  Now it is flat!  Actually it is concave because her new organs are smaller and don’t fit the huge space- yet.  But today the belly looks a bit more normal.  One of Aria’s fave PICU nurses last night commented that the flat belly makes her look taller!  I said Yeah! It totally does.

Hamish and I are doing ok.  I am feeling a bit surplus to requirements right now and am struggling with that.  There really isn’t anything I can do.  Aria is sound asleep and because her bedside is so busy it is hard to even hold her hand for very long.  So I sit in the corner of the room on the computer and jump up if there is anything of interest.

Asher has spent the weekend with the Arms family and Hamish has gone to pick him up.  They are going to stay and watch the superbowel.  Asher can’t really be in Aria’s room right now so he and Hamish might as well stay and have some fun.  We are so grateful to the Arms family to taking him into their home and loving him so well when Hamish and I are busy with Missy.

Missing our NZ team a lot today.  Feels like they should be here and be speaking Kiwi to us.  Don’t get me wrong I am totally amazed as how awesome UNMC is, they are very very good at their jobs.   But yeah, it is hard to explain.

Anyway better go and see if we can get Missy to show some personality!

UPDATE

That’s so funny, trust the clever radio people to pick it up, well done Anna.  I will leave it there cause it is kinda funny, I didn’t even notice.

Answer to the questions about the bowel- they give the bowel a rest for seven days so she restarts her TPN tonight.  Hopefully on Friday they will start her very slowly on INTESTINAL FEEDS 😀 and hopefully in a month she will be TPN free.

97

As we have been with Aria over the years we have gotten to understand the myriad of numbers that relate to Aria’s health. These have always helped us to understand how Aria is coping and what is going on with her health. Today I came into the PICU and was amazed by that number.

97 was her heart rate, never before has a 2 digit number made me smile so much, I couldn’t believe it. I didn’t even know that Aria was capable of having a two digit rate.

I really hope this means that now she is free of that huge tummy that she had and everything has a bit more room and they have her nicely comfortable that she doesn’t have to work so hard. Aria is a fighter and has been fighting her condition every day for three and a half years, I really hope that now the fight is a lot easier for her.

There is still plenty of fights to come I am sure, their battle for transplant is over, but the war is not over. Now she battles rejection and infection. She has some wonderful staff on her team and a whole heap of prayer from all of you. We are really hopeful that she is now on the path to a good life where she doesn’t need to fight every moment to get by, but she can just enjoy being a little girl.

UPDATE from Docs Rounds this morning

Aria is currently getting a 9/10 for her recovery!  Everything is going pretty well.  They would take her off the vent today but she is going back to the OR tomorrow morning for a washout so there is much point in taking it out.  Her urine output is a bit low in the past couple of hours.  They think perhaps urine is leaking into the abdomen thru a leak where they connected her kidney to her original plumbing.  But they are checking her drains to see and will fix it when she goes to the OR tomorrow.

They are dropping her pain meds and she is waking a bit more.  Not sure if she look less yellow today, perhaps it might be a slow process.  She does look great though.  Also they changed her wound dressings and they look good.  She is still ‘open’ because when they finished the transplant they knew they would have to wash her out so left her open.