2008 December - Aria MacDonald

We were hoping today that Aria would go down for a liver biopsy.  She was put on the acute list which means you can be bumped off for emergencies.  So at 3.30 pm I asked what the go was and the plans had changed.  Dr C had been downstairs to check the ultrasound from yesterday and it was all looking perfectly fine and by the afternoon it was looking unlikely that Aria would get down today.

At lunchtime though I noticed that her outputs were looking back to their normal colour.  They have been quite pale for weeks now, like the bile has been absense so obviously something is up with her liver.  Your liver produces the bile that drains into your intestine and helps digest your food (I think- someone correct me if I am wrong)  Anyway this was a great sign and we are hoping this continues and her liver tests done tonight come back better. 

I was a bit sad today because Aria missed a fun day at daycare and with the lead up to Christmas it would be nice to be home.  But maybe it is not to be, hopefully soon though!

Lots of people are having trouble loading the site, although our web guru Dan in Switzerland is having no trouble getting on!  How strange is that?  So I will update just in case he is not the only one.

Of both sorts!  The website is down and Aria is admitted and on ABX for 5 -7 days :(  Hopefully we will be out in time for Christmas.  Liver scan tomorrow which will tell us more, but she is a bit yellow skinned which isn’t good.

Test results are back and Aria’s liver numbers are worst.  For those in the know her Bili is 104 which isn’t good.  She is being admitted today for ABX and a liver scan. 

Hamish is off today which is great timing, perfect timing, God’s timing.  I am peaceful and happy, firstly because Aria is actually well within herself.  Happy as Larry.  So strange to go to hospital when she isn’t actually sick and we are sad she is so wasted.

I hope we are out for Christmas but if we aren’t we will deal.  Hamish and I were just talking and if God wants us to be in on Jesus’ birthday thats cool.

Hopefully you can all read this because the website was misbehaving this morning.

Not sure who Mr Mannering is but he shouldn’t be panciking and either should I but it is pretty hard not to.  Just got a call to say Aria’s liver numbers are wonky and we should repeat them this arvo.  And that also goes along with the fact I have noticed the whites of her eyes have been turning a funny yellow colour 🙁

Scary because as soon hear that I immediately thought her liver was finally packing in.  Hopefully it is more likely to be something to do with her TPN.  Currently the ‘fat’ she is getting thru her TPN is Omegaven, which is apparently supposed to be amazing to prevent liver problems, so I have read and know from other mums.  Mmmm concerning. 

We should have the results tomorrow and can go from there.  Praying hard that there is nothing wrong and we won’t be admitted at Christmas.

Yesterday was Aria’s dressing change at Starship.  The experience was MILES better than our previous one and we are so grateful.  I walked out almost uplifted by the experience (I know! Madness!) because it was so different to our last one and I could see God’s hand in the whole thing.

The biggest difference was the provision of Hamish being able to take an hour off to come in and Nana was there to entertain Asher.  I think it was helpful for Aria to have Daddy holding her arms and she was so excited to see him.  Also Asher and Nana being there meant there was someone new to spend time with after the experience.

We are always so grateful that Hamish’s work is supportive of our cause with Aria.  Obviously it is the busy Christmas season but they were willing to let him have the time with very short notice.  Fisher and Paykel is a great company and have been a blessing to us and for us.

The best thing was that Aria was so happy after her dressing change, zooming around on Scootie up and down the ward.  And during, not to much yelling and if there was we were able to distract her and pull her back from losing the plot totally.

Honestly, I was dreading this all day and I am completely surprised about how it went.  Although I shouldn’t be surprised, God does good stuff for us all the time.

It has been a busy week and weekend again.  Asher birthday being the highlight and Aria’s dressing change the lowlight.  I sit here on Sunday night knowing that we are about to repeat the event again tomorrow, fearing that it will probably be worse.

The day after Asher’s birthday was the final straw really and we knew things had to change.  Aria has been waking up at 4 to 5am nearly every day and yelling and vomiting.  This has been going on for weeks and it is really hard, mainly because I know in my heart she is not right and this isn’t normal behaviour and I feel bad her life is like this right now. 

So Thursday morning brought tears and tantrums, mainly mine, I know sad right?  The main problem is I feel Aria will eventually get a fever and her line will go.  I want ABX now, before this happens and so we can all get some sleep.  But that isn’t going to happen for reasons my head understands but my heart doesn’t. 

Instead I stop fighting and submit to God and the powers that be.  And after some straight talking from Hamish I put my grand plans aside for more realistic ones.  We have moved Aria’s bed and she is sleeping down the hall.  This means one of us can get up to her and the other can sleep.  And we wait and pray.  Pray for the early morning wakeups to go or a fever to come.   Please pray for us.

Happy Birthday Asher!! 😀

 

Asher is one today, we can’t believe it.  The year has gone by so quickly.

We are so grateful that God choose to bring this amazing little boy into our lives.  He is such a joy and we are so amazed at his personality and how chilled he is.  God picked the perfect child to be born into our family and the challenges that go along with it. 

Aria and Asher get on very well 95% of the time.  Aria loves to kiss and hug her little brother, it is very sweet.  They play together and Asher makes Aria laugh with his antics.

Hamish and I are forever thankful that we have one boy and one girl and our family is complete for now anyway 😉

God has done great things in our lives, Asher is proof of that.

Aria and I ventured back into Starship for another dressing change.  It was awful.  She pretty much screamed the place down which isn’t surprising as most two year olds would.  We have to hold her down so she doesn’t grab or move and she hates it.  Plus there was an injection as well just the cherry on the top!

It is really difficult to deal with and you just walk away drained and emotional.  It is my policy is never to cry in front of Aria or hospital staff no matter how tough things are.  I just feel I don’t want it to become about me and I need to be strong for Aria and have the staff fully focused on her not the weaping mother.  Today was hard though and I nearly cracked.  I don’t think that she is actually in pain except for the injection when she signed ‘ouchie’ to me.  She is just angry.  And that is fair enough. 

She did well though and was happy as larry as we left and told Daddy all about it when we popped in to see him at work. 

In those tough moments God seems very far away.  It is a test of faith really, He holds on tight to me and for that I am grateful.

This weekend was a busy one.  Three Christmas parties!  And our night out for our anniversary and Hamish preached on Sunday too.

We went to Fisher and Pakyel kids christmas party.  They still do those big old school 80s style parties with lots of rides, presents for the kids, eats and lots of cool things to do, even rides in a police car and fire truck!!!  In the arvo was Rainbows End and the KIDS Foundation party.  Also very cool.  Of course Aria spent most of the time refusing to go on any rides and then we she finally changed her mind it was time to go and she cried!

Sunday was daycare’s party and our family came and saw where Aria and Asher go each week.  We had a great time and the kids loved it!  Josie and Simon were great hosts and it was nice to chat to the other parents.  Yummy food and a visit from Santa there too!

Today is tidy up and recover day.  Phew!

Special prayers and Hugs to Lara and her family.  They are a tough time right now.  It is not easy dealing with 2 years olds in a hospital setting, I know that first hand and it is even harder to watch them suffer.   May things get back to normal very quickly and before Christmas

For weeks now Aria has been waking at 5am and yelling to get up.  Typical 2 year old behaviour or something amiss? 

This week Staph was cultured on the outside skin around her central line.  Aria and I went into Starship on Tuesday arvo for a wiggle dressing change.  Our nurse specialists, both of them, put this superduper dressing on to kill the bugs.  Of course Aria protested and it was a bit full on but we got thru it ok. 

Since this dressing went on, no 5am yelling!  Two days of no yelling.  Is it too soon to blame the bugs and declare victory?  I am currently typing this at 1am in the morning.  I can’t sleep to excited about whether or not the weeks of 5am wake up are over.  How sad am I? 🙂

We are back in at daystay on tuesday for an iron infusion and another dressing change.  As the dressings are 7 days each I get a nice two week break from having to change Arias dressing and the drama that comes with it.  And Aria only has to have a dressing change once a week! Yay.

Asher is on the mend I think.  He is loving the soy formula, thank goodness, although at $25 a tin I am not loving it that much!

Anyway stay tuned for more exciting updates on the demise of the 5am wake ups!!