2009 November - Aria MacDonald

Our grand plan last night didn’t work.

Aria was up at about 1.30am and we went into the TV room to watch some telly.  But we didn’t expect a temp of 38.8 and her coughing is back.  She is happier watching telly but because she is so uncomfortable she needs us to change her position every ten mins.

At about 3am I realised that it was highly likely we would have to go back to Starship in the morning and I wasn’t going to get any sleep.  Plus I knew I would struggle to look after Asher with only 2 hours sleep.  So Hamish and I swapped over at 3.30 and he got another half an hour sleep.

So they are back in ED.  Hamish text to say they have organised pain relief.  I really wanted morphine at home but Hamish and Dr E didn’t- can’t argue with the bosses! :)  But we have figure out something else.  Mums out there- be so thankful each time you are able to simply give 5 mls of liquid panadol to your child available at the supermarket.  I know I marvel at how simple oral ABX and panadol is for Asher and how difficult ABX and pain relief is for Aria given no gut function.

The good news of the day is that we have found a home for our cat Madden when we go.  A lovely older couple is going to take him.  Madden is an old cat and they really wanted an older cat.  He will get spoilt rotten which is wonderful because he hasn’t had the attention from us over the past 3 years.

UPDATE:

Aria and Hamish are back home again. They got the pain relief and a different antibiotic to try. Best news of the trip is that after Hamish explained to Aria that they would be able to help her sore tummy at home, she was quite happy to come back here and wasn’t asking for more sleepovers, YAY!

Aria still continues to be unable to sleep well at night.  This has been going on for weeks and is getting draining.  The downside to being at home is that she wakes both of us up and both of us have bad nights.

The new plan is to move her into the wiggle room and we are going to to night about.  She is waking in the night and begging to get up and watch TV.  OF course we spend the night arguing with her and saying no it isn’t morning time.  So tonight we are going to throw parenting convention out the window and just let her get up.  If she wants to watch TV then fine.  Who cares, we are so over it and willing to try anything.

Speaking of trying anything we are putting antibiotics into her G tube and seeing if that will help.  Aria can’t absorb even a glass of water thru her stomach but perhaps if we take her drainage bag off and clamp the tube the ABX might float around in there and work their magic.  Maybe not but it is worth a shot.

She had her MRI today, no results yet.  Not sure what to expect from that really.

We are hoping to have a somewhat normal weekend.  We have a trip to the zoo planned and I am really hoping to get to church having not been there for 3 weeks.  We are so over talking about funding.  Reminds me of being pregnant and those ‘so you are still here’ comments.  Yes the giant belly would suggest that.  I know, I sound super grumpy but if we had news we would be beaming it from the rooftops and trust me it is going to spread like wildfire.  Sigh, refer to the first paragraph to explain the grumpiness of the last one.

We continue to be stunned at God’s timing.  Last night Asher stayed the night at Jo Jos (thanks for having him Josie and Simon!) and I decided to stay at Rebeccas so I didn’t have to fight traffic to get to a 9am meeting with Dr E.

I fussed about and didn’t leave until 7pm.  Just as I was gathering my things the doorbell went and it was Mr Van den berg from Covenant church with a CD of sunday night’s sermon on God’s timing.  One of our elders, Tony, asked him to drop it over for our listening and encouragement.

The only CD player we have is in the car and as God would have it I was about to make a 30 mins car trip!  I listened to it and was greatly encouraged.  The passage was from HERE.  Jesus was a healer of many and the sisters of a sick brother sent word to Jesus to come and heal him.  However Jesus waited until Lazarus had died.   Jesus arrived too late according to Martha, Lazarus sister.  But Jesus was to do something far greater and raise Lazarus from the dead and send a far greater message of love and hope for His own death.

Jesus appeared to come too late.  Our funding seems to be coming too late.  But we continue to see and know God’s blessing and lived the impossible life in the midst of darkness.  We see God MORE, not LESS.

I went to see Hamish and we sat on the 26B couch and cried about the awesome news that God isn’t late!  Never late!

Anyway, in other news Mr George Hawkins continues to be an excellent advocate for our cause.  He rang yesterday with news he had spoken face to face with Tony Ryall and officially thru his office.  Awesome.  Mr Ryall was understanding and sympathic to our cause according to Mr Hawkins and will remind his staff making the decision to speed things up. 

Oh and Aria is home now.  Two nights without morphine is great.  But back in at 8.30am for an MRI.  Hopefully that doesn’t mean staying the night.  She is in good spirits and her bili seems to have settled at the high 200 low 300s, we can deal with that 🙂

Aria didn’t need morphine last night, that was awesome progress.  But she didn’t sleep very well and wanted to sit in her pram.  Unfortunately her feet are puffy from sitting up 24/7 so I wanted her to try and lie down but at 5am I got her pram from the hallway and got another hours sleep.

We had a meeting today with the transit nurse who might be travelling with us on the 1st of December.  It was a helpful meeting and good to know a lot of things are being taken care of for us i.e paper work and TPN stuff.

I sit here having just had a missed call from Starship on my cell.  Apparently I couldn’t throw myself down the stair quicks enough.  Needless to say my heart raced but it was just the ward calling Aria back for ABX and they didn’t realise I was at home.

Checking email has become an hourly activity, I just keep hoping the break thru might come from the right person saying the right thing.

But at the moment there is no news and no break thru.  There was a flurry of activity last week but we have used all our resources short of the media.  And now we wait.

Will we be moving to the US in two weeks or not?  Will my daughter get a chance at life or will she not?  These are just the two big questions.  There are a hundred little ones including- who will rent our house?  Just minor stuff you know 😉

Got the most beautiful card in the mail from Katherine with this amazing verse that stopped me in my tracks dead on the driveway

“I will make the Valley of Trouble a door of hope”  Hosea 2:15

Very much feels like we are in the Valley of Trouble and needing lots of doors throw open to give us hope.  God has amazing promises.

But firstly – Good News!  Aria Bili number is 292!!!!  YAYAYAYAYAYAY

It is continuing to drop and is down almost 100 points from it’s all time high of 380.  This is great news.

In less than an hour we are off to see George Hawkins who is our local MP for Manurewa.  I contacted his office a week ago and we are grateful that he has agreed to meet us as such short notice.  I will update later to let you all know how the meeting went.

UPDATE

Hamish and I had a really positive meeting with Mr Hawkins this morning.  Very interesting to meet him and get his advice.  He was very supportive and asked us good questions about our situation and was concerned with the details of our travelling with Aria.  He really seemed to ‘get’ our situation and expressed his sympathy and understanding of the tough spot we find ourselves in with Aria.  He said he would do his best to get a meeting with Tony Ryall if he is in the country.  He also offered to contact the US ambassasor for us should we have trouble getting visas as this late stage.  Finally he gave us his confidental mobile number should we need anything more.  So we are really pleased, thanks for your prayers.

Hamish is home and has left Aria with Poppa at hospital.  Aria has been very attached to Daddy lately so we were both nervous about the drama of him leaving.  But she was completely fine and waved nicely to Daddy.  Phew!  And hopefully Hamish and I will be able to spend some time together after the meeting.  Asher is at Kerriannes today in Beachland with his little mates.

Thanks for your prayers and support.  Honestly every single comment, text, email, facebook messages boosts our spirits.  Sorry if we can’t always reply but it doesn’t go overlooked that’s for sure.

Thank you!

Aria only had one dose of morphine last night.  Still a bit unsettled but at least no coughing and vomiting.

Haven’t got the bili results from this morning.  In no hurry for those because we are enjoying celebrating their downward trend.  Not that I have any reason to believe they have gone up but I don’t want the bubble to burst either.

Tomorrow morning we have a meeting with our local MP.  He is Labour and we have a National govt but we feel it the right thing to do to talk with him about our current issues.

Our position is so overwhelming.  There is so much to do and on Tuesday it will be 2 weeks until departure.  There are visas to get, tickets to buy, suitcases to pack, a house to pack, TPN to organise.  And no clue as to the timing of those things.   Not to mentioned it would be great for Aria to be a bit healthier.

Shirley was staying with Sam last night and we caught up in the evening.  She told me this amazing story about missionary friends who went to the US embassy in Laos and received a 5 year visitor visa for them and their 5 kids to stay in the US.

I believe God can make all the plans fall into place what I don’t know is if he is willing too.  He may open or close doors.   If we are meant to be in Omaha we will be and nothing will stand in God’s way, the MoH included.

Aria is happily in bed putting stickers on her face and cutting and pasting with Anita. She is in a far better today than she was yesterday.

A better nights sleep may have helped. She spent the night swapping between sleeping in her pram and sleeping sitting up in her bed, which the thoughtful nurse got a special mattress for to make it more comfortable. She wouldn’t lie down, although I’m not sure if it was because of actual pain or fear that there might be pain, I’m leaning towards the fist option.

We also had no temperatures overnight after she was in the high 37’s yesterday evening. Hopefully this is genuine lasting improvement. We’re not counting chickens however and still plan to sit tight in hospital till we get some good answers/consistent wellness.

Thanks for your prayers as always.

UPDATE: Her Bili is now down to 307! Hopefully it keeps falling.

Broke my heart when she said this to me this morning.  She isn’t alone, we are worried about her too.

Warning:  This post may make little sense, matching my little sleep.

We finally got up to the ward at 1.30am and Aria woke, screaming every hour or so.  The Docs had charted morphine and I accepted it for Aria and it seemed to help.  She had three doses but it would only cover for about 2 hours.

She is pretty unwell today, finally whatever has been hanging around is declaring itself.  Her temp is 38.3, her heart rate is up, as is her blood pressure.  She is managing some words but is pretty low.

We went down to ultrasound and they found nothing.  Very disappointed because we don’t know what is causing the pain.

Thankfully the consultant has been in twice and came down to ultrasound to say we will catch up after lunch.  But I needed to come home to sleep so Hamish is with her.

I am so tired and so concerned for Aria.  I really hope they can get on top of whatever is troubling her.

UPDATE Finally some good news  Aria’s liver numbers are down!  They hit an all time high of 380 but have come down to 320!  Still crazy high but an improvement.  Samantha has been kicking around in Starship too long because that was also the theory of the Docs that Aria may have a tummy bug.  But of course she doesn’t eat so it is hard to know cause. 

Meanwhile we have a meeting with our local MP on Monday morning.  And have gotten a very valuable contact to help with media IF we have to go there.  Which we don’t but we are getting desperate.

Had a long chat with Jodee yesterday, we must of talked for over 3 hours!  Totally turned my day around which I was thankful for because I couldn’t of managed the trip to ED without the boost of Jodee’s advice and positive outlook.

Anyway please please keep Aria in your prayers and the rest of our family.  Ashie is with Aunty Megan and the cousins today which he was excited about.

Aria and Anita are back in ED tonight.

Aria started to complain of pain in her abdomen late this afternoon which is unusual for her. We decided that we should take her in and stay until we have some real progress or explored every possible avenue for her care and/or have a clear answer as to what is going on with her.

Please pray for her health and especially her liver.

We are struggling at the moment and covet  and appreciate your prayers.

…long

Feels like a week has gone past but it has only been a day.

Aria’s seemed ok today pretty happy and perky at times.  Her temp was back up though so that was very disappointing.  We took her back in to Star for another dose of Gent, tough on the kidneys but it might help her liver.  I just can’t reconcile this little girl laughing and pretending to be a snake in the middle of the supermarket with this little girl who is slipping downhill.

Lots of emails flying back and forth today.  We have been in contact with our local MP Mr George Hawkins.  His Executive Assistant contacted me within hours to say they were seeking an urgent response for the associate health ministers.  Plus we have several other leads with the family that will help.

We are 100% sure that the MoH know the urgency and desperation of the situation and they said ‘please reassure them we are all working to make this happen as quickly as possible’  of course that came with a ‘but no promises’ tacked on the end but hey.

The elders and pastors of our churches came over this evening to pray over Aria, the 4th time in her little life.  First when she was born, second when she was really ill for a week and no answers, third when she was admitted to PICU for the sodium OD and finally tonight.  It was a massive blessing to have them pray over her and encourage her.

More encouragement came from my friend Christy who rang from OZ and prayed with me over the phone.  Completely awesome and she spoke all the words my emotions can’t quite say correctly.  She encouraged me greatly as we talk about our God and his purposes for our lives.  There were several other phones calls today which lifted my spirits greatly.

Last but not least one of the pastors brought around an envelope.  We opened it and were completely stunned.  Pukekohe Christian School lead by Jes Sonneveld has been busy fundraising with mufti days and bake stalls.  We had heard briefly the some fundraising was going on but didn’t expect the $560 that came in the envelope!   Thank you Jes and all those involved, your timing is perfect, God’s timing.

God was very active today in our lives sending his people and still providing for our needs in Omaha.  Even though Omaha looks far away right now and Aria’s life looks bleak still He still keep providing.