2010 November - Aria MacDonald

Snow is very romantic, at least for this kiwi girl from balmy Auckland.   I sit and watch it whirling and swirling around in the air and wonder if it is actually falling or not.  I have a perfect seat on the window sill, I can feel the cold pane of glass on my arm.

This would all be very grand of course, like a Christmas card.  Except of course that there is no roaring fire in a hospital room.

Aria continues to dump out of her stoma.  The window for blaming the wrong feed is closing.  That, together with a temperature overnight of 38.8 means she is back.  She is also getting bad headaches in the back of her neck.  They come on suddenly and she cries and says ‘really sore’ and then they go again.  I feel really sad for her 🙁

I had been so excited for the next snow fall.  It came last night as we were bundling Aria up to take her in at around 3am.  The worst timing.  It was windy and snowing, took my breath away!  Thankfully they made it in ok.  Asher woke up this morning super excited to see it. Snow! Snow!

Scope this afternoon at 2.30.  Dumping and fever go with rejection so the biopsy will test for that.  Hopefully it is still the wrong feed but that doesn’t explain the headaches.  Apparently there are lots of kids in with tummy viruses.  It is that time of year!  Stink

Tonight an old friend came to visit Aria.  We remember this friend very well.  Aria said ‘my pump from New Zealand’ and stared it at in wonder for ages.  Yes this little gadget has been a faithful night time companion with Missy since she was 12 weeks old.

Yes this is Aria’s wiggle juice pump AKA TPN pump.

No- don’t worry Aria isn’t back on TPN!  But she is requiring a IV bolus of fluids over the next couple of hours.  Unfortunately we were sent the wrong formula a couple of days ago.  Aria got the adult version of peptamen rather than the junior version.  Yesterday she had over 900mls out of her stoma in 12 hours!  Bad!!!  Hamish clicked to the mistake and we rang transplant at 10 pm last night.  Thankfully we had other peds formula on hand and switched to that overnight.  Sure enough the stooling slowed down.  Also thankfully she only got 3 cans of it.  Kicking myself hugely cause I unpacked the box and didn’t even notice the difference in label!  Doh!!

But Aria got pretty dried out and dehydrated hence the bolus of fluid.  Hopefully she will be better tomorrow although she acted just fine all day apart from some headaches 🙁  As you can see, this is her being silly.

Oh and good news is we have been able to take Aria off her o2 during that day!  She is hanging out at 95/94% consistently!  So great to see her face without tubes on it!  It has been many weeks now, we were giving her ‘free’ cheek lots of kisses today.

ALSO CLICK HERE to watch Aria on our local news channel

Today is Thanksgiving Day in the US.  A holiday and a day of eating and thanking God for the things He has done.  AND it is also our 10th wedding anniversary!

So today is a cool day for us and we are celebrating.  Unfortunately not as we planned.  Both kids having coughs and temperatures and are generally under the weather.  We are of course disappointed, we had been invited to celebrate with Thanksgiving with Carol and Cordell and their family.  But the pavlova will still be decorated and thanks to a quick trip to Wholefoods for giant turkey legs we will still feast 🙂

We have so much to be thankful for.  Including the fact we actually had people to cancel Thanksgiving with!  We actually got a couple of invites to spend Thanksgiving with our friends but Carol and Cordell got in first LOL!!!  Praise God.

While Aria isn’t in the best of health today she isn’t dying like she was last year.  This time last year we hadn’t even got funding.  This year we have received funding and again for another transplant.  Aria has lived.

Please pray for Aria’s two donor families today, they are on our hearts.  Please pray for Aria and Asher that they might get better and that Aria will avoid hospital.

We are thankful for YOU!  The people that have loved and supported us this year!

The kids improved as the day went on.  Aria is pretty much on her normal o2 requirements and is looking really good.  Really hoping they improve overnight and no more temps!  We had a quiet day in front of the TV and hanging around the house.  We put up the Christmas tree too! Yes those are jandals/flip flops- are they cute? And yes that is Asher with a grumpy face- didn’t want to eat lunch!

Aria is doing really well.

Her oxygen needs are decreased, and we even took her out for a little bit today without her oxygen tank, YAY!

Physically she is doing well too. She is walking around heaps, always wanting to jump out of her push chair and walk around whenever we are out. At home she walks around amusing herself quite often and will go and get what she needs. Today Asher took the Wii remote control off her and went and sat on the couch, Aria took off crawling after him to get it back, its nice to see her take action to resolve an issue herself, rather than sit and yell at us. Aria had four goals set for her by her physical therapist before the last set of admissions and she is accomplishing three of them really well, we just need to get her practicing climbing stairs some more.

The other HUGE news for us at least, is that Aria pretty much slept through the night last night. Anita gave her a good talk about only waking us up twice last night, and Aria did just that, only two calls out to us which is a HUGE improvement over our normal nights. Hopefully that continues or even improves over the next few days. Good night sleeps can only benefit us all.

Well lastly we thought we would leave you all with this a little clip of Aria and Asher dancing to the Wiggles…..

Aria and Asher dancing to Eagle Rock

Aria is home and is doing really well.  A lot better than last week.

We had a really nice day at home.  PJ morning followed by a chilly trip to Target for some bits and pieces.  Aria helped me cook dinner this evening.  We made roast chicken and potatoes with asparagus and baby carrots.  She was a great helper.  It is so fun to see her sitting on our stools at the kitchen island.  When she first got home in July she didn’t have the strength to hold herself and was too scared to sit, even when someone was holding her.  Now she sits and spins around and reaches over.  It’s really cool.  She loves to cook.  She told us today she wants to be a chef or a pharmacist 🙂

Aria is doing even better today.  She was even managing to stay at 97 on .5 of a litre.  Great progress!

The plan is to come home tomorrow which we are happy about since she is doing so well.

I was planning to say more tonight but am so completely tired it has taken lots of effort and the use of the backspace to get this far.  My plans to come home and clean the bathrooms has been replaced with sitting on my behind watching telly.  Slothful I know.  There is that backspace again.

Love to you all, thanks for the comments, they rock.

Aria is doing heaps better which is great news.  Got some more fluid off her and her legs are starting to look a bit normal which is great.  Also she is managing well on 1 L of o2 which is great news.  Her o2 requirements are decreasing as the fluid come off, YAY!

We have no answers as to what caused the temp spike, all cultures are clear.  Never mind I guess, she is doing better.

Hoping to get home tomorrow!

Miss Aria has boomeranged back to hospital.

She woke at 5am with a fever of 38.8.  When you are an immune suppressed kid with a central line this is a big deal.  She looked pretty average and was complaining of a sore head.

Thankfully she is doing much better now and informed us her head was better.  She is even on 1L of 02 and sitting at 96.

Of course all the normal cultures and tests and xrays were run so we sit and wait to see what the dealo is.

In the mean time, enjoy this beautiful poem penned by Rod Walford about our girl,  CLICK HERE

Yesterday our family spent the whole day in our PJs.  We had no were to go and no one to see so we made the most of it.

Transitioning home is always tough.  Which is a little strange because it is the thing we miss so much when Aria is admitted.

Perhaps the reality is that Aria isn’t doing super awesome at home and it is a little nerve wracking.  Combined with the fact she doesn’t sleep very well and Hamish and I are up a lot at night.  And her med schedule takes up to an hour+ twice a day, which actually might sound like a dream to others I admit!

Aria weight has gone up a bit.  Unfortunately she likes to drink a lot at night, around 500mls.  We think it is just a habit/comfort thing, something to do.  But when we are trying to dry her out and get rid of those puffy ankles and help that breathing it is counter productive.  Do we take the water away and risk an even worse night?  Perhaps we might have to bite the bullet tonight because readmission seems likely on the cards.

Overall we just feel really sad to be in this position.  Aria was doing GREAT, off O2 during the day and a little at night.  Now she is back on all day and night.  And we don’t really have any great treatments or answers and any idea as to when it will improve.  There were so many theories, fungus, bacteria, PTLD, graft V host (kinda rejection) and all have been mostly crossed off the list.  She is on one extra breathing treatment to fix the mystery problem and other than that TIME considered to be the best treatment.  We have to wait for her to improve.

Being on 2L of O2 means it is tough to get out of the house, we have to take a BIG tank with us and it gets used up pretty quick.  Blah.  I feel silly to complain given were we have been this year.  But we tasted freedom and the good life and it was GOOD.  We must fully trust in God for His timing and care and guidance.  I wish I was better at this,  I am trying hard though!!

Aria is HOME

There is SNOW on the ground in Omaha.