2010 May - Aria MacDonald

HR- Heart rate

BP- Blood pressure

PT- Physical therapy

OR- Operating room

ABX- Anti biotics

WBC- White blood cell count- a marker of infection

Aria fell asleep with a sponge stick in her mouth!

Yay- Aria had a great night.  She was stable throughout and no bleeding or trips to OR.  Peeing good and labs look great.  They changed her dressings and gave her a bath to get her all cleaned up.

Things are different this time 🙂

Anyway I am up early even though only got to bed at midnight.  So excited about seeing Aria today.  And Asher, he had been staying with Brad and Stephanie and having a great time.

9.30am

Aria vitals are all looking good.  Heart rate 120s, BP is a bit soft 83/43, temp 36.3 O2 100.  She is off the paralytics so she is stirring when we do cares which is good.

PT came in and was talking to the nurse about another patient getting up and walking.  Aria opened her eyes and shook her head obviously thinking they were talking about her!  Funny girl- don’t worry Aria- we aren’t going to make you do feet walking 12 hours after transplant!

Her bili is 8 which is good and her WBC count is 15 which is ok.   Hoping it doesn’t get to the 100s like it did last time!

There are going to be hard days still to come but we are going to celebrate today and rejoice.

12pm

They have gone down on her vent setting because her gases were perfect- good news.  She has extra lung capacity now from her diaphragm being tacked down.  No one knows for sure if this will help her get off the vent quicker but we are all hopeful.

Her sodium is high so she is pretty thirsty.  Aria woke up and kept pointing to her mouth and got a bit upset so we sedated her more.

Her urine has dropped so they are checking her labs- it is to be expected but hopefully it come back soon.

Just spoke with the surgeon.  Aria did pretty well throughout the surgery, there were a few hairy moments when her blood pressure dropped but her heart kept beating the whole time and her lungs did great.

It was a real mess in there like last time although not quite as bad.  The liver was pretty sick and the bowel wasn’t healthy either but we knew that.  Dr Grant tacked down her diaphragm too, hopefully this will help.

The surgeon is happy although stopped short of saying she was excited, but she thinks these organs are good for Aria.

The hard work is about to start, this is the easy part.  Please keep praying.  Aria will be on lots of anti-rejection meds which are harsh on her little body which has been thru so much already.

Praise God for His provision again- He is Good, we want you to know that.

She is back better go!

WOW Her bili has dropped from 33 to 7.  This liver is awesome.  Her kidneys are peeing well to, she is a lot less puffy.

MIDNIGHT UPDATE

Ok we are going to hit the hay now.  Has been a big day.

Aria was awake and opening her eyes and answering our questions with nods or shaking her head.  She seems all there but they didn’t like her that awake so she is sedated now.  Praying for a quiet night.

We couldn’t get a room in the Lied because it is full so we have had to come home but we feel good.  We aren’t feeling overwhelmed right now and yes Dad you are right the reason for that.  This morning I felt completely awful and sick about the whole thing but now I am feeling better and at peace.  God is in this, we have such a strong sense our prayers have been answered.  Aria looks better this time than she did last time.

According to the surgeon it will be a complete miracle if Aria avoids the OR in the coming days and weeks.  But we are going to sure ask God for that miracle but accept whatever comes our way.

Good night.  THANK YOU FOR YOUR COMMENTS AND PRAYERS!!!!!

8pm

They are finishing up and Aria has remained stable thru out.  Will update more after we have spoken to the surgeon.

4.30pm

The donor organs have been removed and they are starting to sew the new ones in.  Wow this is were the hard work starts.

2pm Update

They have open her up and have started removing her old donor organs, Aria is doing good, went to sleep very well.

Thank you Hamish for your lovely post, very kind.

We went in this morning and Aria gave me lots of smilies and gave me my mothers day present of a cook book and homemade goodies.  She was very excited to give it to me and help me open it.

Today is a big day.  Someone has given me the ultimate mothers day gift and that is the donation of their child’s organs. Aria will go down to surgery at 11am US central time.

My heart is heavy and I feel sick to be honest.  There are two donor mums out there, one whose pain is fresh and raw and other one whose pain is probably not so fresh but still raw I can only imagine.

I wish we didn’t have to do this but there is no other way.  It feels like we just got her back with her smilies and interaction and now we hand her back.  It is desperately hard.

Asher is spending the day with Brad and Stephanie- thanks guys for taking him, perfect timing.

Please pray for her surgeon and the outcome of today.  Please pray for Aria’s body as it is about to go thru something huge.  Please pray for Hamish and I as we wait.  Finally please pray for the donor families for peace during this time of pain.

It is Mothers Day morning here in Nebraska and we are celebrating a very special mother in our family.

Anita is an amazing mother to Aria and Asher and I feel so privileged to have her on my team in this crazy life we lead.

Her passion for and commitment to the kids is endless and her insight and foresight is a real blessing to our family.

I have seen Anita rise to every challenge on this rocky road and truly respect her for the way she has grown under the great weight of our circumstance into a strong Godly women who remains focused on God.

Both the kids love her as much as I do and we all feel lucky to have her. Aria was so excited yesterday to be wrapping up Mummy’s present, she wanted to do be part of Mum’s special day.

Thanks Anita, you are awesome.

Argh- the past week has been really good.  Lots of happy people skipping into Aria’s room singing positive songs about Aria’s health.

Yesterday however the song hadn’t changed but for some strange and bizarre reason everyone from the surgeon to the cleaner managed to make me mad.  You see I have waited a good 12 hours to decide whether to post this but decided I would because we intend to be honest about our life in hospital and that it isn’t sunshine and roses all the time.

I arrived and they were giving Aria a bath.  This just makes me mad.  Aria hates having baths and this is something we want to be there to help her with plus it is one of the few cares we can actually do for her.  As soon as Aria see me she motions me to come over but I can’t get to her because the nurse is on one side and the tech on the other.

Rounds were a disaster, honestly sometimes I just walk away from them going ‘what just happen? why the heck am I so upset?’  I don’t even get it, it is truly weird.  I asked about them tacking down Aria’s diaphragm during her next transplant just to double check it would happen.  Unfortunately my question seems to be ill timed, don’t know why, was just a question.  Apparently it isn’t that simple and this issue isn’t important and has taken on a life of it’s own etc etc.  What!?  I kept saying ok ok ok just so they would leave.  It was awful.

Trying to recover from that and speak to Hamish on the phone to get his sense of this and his take on what on earth happened at rounds proved tricky.  Aria decided to take a nap- perfect.  Gave me time to regroup, fix my panda eyes and sort my head.  Except keeping people out of her room proved a tough mission.

The tech came in wanting to do vitals on Aria- blood pressure and temp.  I knew this would wake her- would you sleep thru someone squeezing your arm?  I asked nicely if we could please wait and she replied curtly ‘sure’ and threw her gown in the linen bin causing the lid to bang down loudly and walked off.  I could be wrong but I just got a vibe of attitude particularly when she caused the loud bang and didn’t apologise.

Finally I went to heat up my lunch knowing Aria would be awake soon.  Half an hour to eat in peace.  Bumped into PT on the way back, ok definitely only half an hour because she wanted to do Aria’s exercises soon.  Got back to the room and the nurse AND cleaner were in there. Nooooooo.  The nurse, thankfully didn’t wake her.  And I managed to intercept the cleaner before she got into the room.  But again not without angst.  Again I asked nicely, with my hot Tikka Masala in hand, if she could please wait to clean Aria’s room because she was sleeping and wanted a quiet room.  She replied ‘I am just going to mop and wipe the counter’   I said fine and shrugged my shoulders feeling completely defeated in that moment.  It was a very hard to deal with for some reason.  I guess I struggle with the fact I can’t even eat my lunch in peace without having to ask someones permission and they may not even grant me that request even should I ask.

Anyway – Aria woke up later and she did awesome at her exercises and preschool.  She asked to go for a walk so we did and she seemed to look happier and bright eyed afterward.  So the day got better thankfully.

This is so hard, we have been at this 5 months and probably have another 5 months ahead of us.  Hospital life is tough.

This is the best photo we have of Aria’s smiles.  She is smiling more but we are just enjoying her we don’t run for the camera. These smiles were for Daddy when he arrived the other night.  While Daddy talked to Aria I grabbed the camera

This is Aria out for a walk, you can see it is quite a production.  The team is looking in to getting her a more portable vent machine (the one on the right) and a custom trach made for Aria so it will be easier.

Hamish and Aria had a good day together in hospital yesterday and Asher and I had a busy day at home.

Asher and I went to visit our friends for a little play date.  We met the Elsassers when they were across the hall from us and they are amazing people and their youngest daughter Evie has an amazing story of God’s hand in her life.  They live about 5-10 mins walk from our new place.

When I got back we checked the mail and headed up stairs for a rest and a bath later.  In the mail was a few letters and one from Wholefoods and I was trying to figure out how they got my address.  We love Wholefoods, it is a beautiful supermarket packed with real food where you can feel confident about your purchases.  I opened the envelope expecting some coupons and in it was a $155 gift voucher 😀 Happy Days!  Thank you to everyone who contributed, it is the most perfect gift!  We are very grateful.

Later in the evening we went to Brad and Stephanie’s for tea (suppper/dinner) we had a yummy dinner.  If you go to an American house for tea you will always try a new combination of something.  We had chicken and steak and potatoes and fruit salad.  Yup you ate the fruit salad with your dinner.  Mango, strawberry and pineapple, fresh and yummy.  Oh and not forgetting the homemade hummus and pita bread.  Anyway we laugh a lot with Brad and Stephanie so it was nice.

Anyway, back to Aria.  She is still doing great, no fevers for 3 days- super awesome.  She is doing really well, yay.  God is good.

Wow what a great day- first check out this cool pic.  A church group (I think) made Aria two hospital gowns and made matching ones for Green Dolly!  Aria was well pleased.  The kindness of strangers hey?  Super cool

Today started with a merry band of hospital staff skipping into Aria’s room with big grins on their faces.  On paper Aria’s looks just great.  Her kidney numbers are the lowest they have been in ‘like forever’ was the quote.  Everything looks great apart from her bili which is obvious.  Everyone is really excited.

Those on FB will know what happened next but big efforts were made by everyone to improve Aria’s quality of life and it was super awesome to see the team’s dedication to more than just her body.

Later Aria sat in her chair for 6 HOURS!!!!!  WOW, happy as, just sitting and watching telly dozing a bit.

Next we turned the TV off and listened to wiggles songs and did some medical play with her baby doll who has a wiggle in her hand.  She really liked it and did well and gave herself a clap each time she finished her flush.  We did the actions to Hot Potato and Aria joined in.  There is some music when you do a little dance and she did a little body and head dance and smiled at me, unprompted!

Next we had music therapy with Bridget (watch the news story HERE) and Aria did really well.  Bridget has banana and apple shakers and we sang the song ‘I like to eat apples and bananas’ and Aria pretended to eat her apple.  Funny girl.

Aria was pretty tired so I popped on a DVD and left her happily watching Winnie the Pooh and went down the hall to chat to friends.  When I got back Aria had lots of smilies for me and gave me a cuddle!!!  Gosh was I a happy mummy bird!!! She reached up her arm and pulled my head close to hers, it was super sweet.

Anyway all and all it was a great day.  Apart from a bit of asking for water which was a bit of a trial I think the day was a success.  I am really proud of her and what she is achieving.

Aria’s life at the moment is in a strange holding pattern. Everything that happens is kind of marking time in anticipation of the ‘call’. Progress and set backs are all measured in will this help or hurt Aria when it comes time to get the new replacement parts. Today we saw from Aria progress that will help Aria in her transplant.

We have been trying to build up Aria’s strength so she will be better able to get through and make progress after the next grueling operation that she faces. One of the ways we do this is to put her into her wheelchair to develop her core strength and balance. Today the physical therapist (not Aria’s favourite person even though they are lovely) decided to give Aria a good workout while she was sitting in her chair and what she achieved blew me away. Aria did some kicking of her legs out in front of her, some assisted but she did about 4 on each leg totally unassisted. She then did some reaching up above her head to touch the therapists hands and even managed to do some of those unassisted. What was especially good to see was her starting to get some good movement in her left arm which is normally restricted in its movement by the ventilator. Following these efforts she did some flapping of her elbows like a butterfly or chicken. She did these all by herself and reminded of the good old days when Aria would watch the Wiggles and do her favourite dance ‘The Flap’.

It is great Aria getting stronger and better prepared for what is next. As I say it is all about the next transplant but at least she is in a good place for it.

In other good news, the Infectious Disease specialist was amazed with how sensitive the Pseudomonas that is in her blood is. She was so amazed in fact that she told me she was going to frame the page of results and put it on the wall of her office. It is amazing, but then again, we have an amazing God.

UPDATE******** WOW- guess what!?  The Pseudomonas in her blood has come back with TEN sensitivities!! YAY, including a drug called Cipro which Aria has been on before.  So we will be able to take her off the nasty kidney UNfriendly ABX and put her on something nicer 😀

As much as it pains me to update cause I really wanted to leave this post up for longer, there is lots going on today.

We have finally moved to the new PICU and it is pretty nice.  As you can see below it is more child-like than the old adult ICU which we used to be in.  We have a couch and proper shelves for storage.  Pretty decals on the walls and doors.  And a nice new flat screen telly that Aria is really enjoying.

Aria was the first resident in the new PICU and is loving her new environment.  She went down in her wheelchair and it took about 5 people but we made it.

Check out the photos below, sorry I am not a very good photographer!

Also we got an organ offer last night from way out of state on the other side of the country.  That is a good sign that Aria is getting calls.  The team declined the offer though because the organs weren’t healthy for Aria.  Anyway, for us it is a positive sign.  But a reminder of the fact there is family out there grieving terribly today.  Please keep them in your prayers.