2010 September - Aria MacDonald

Barely half an hour after speaking to Hamish confirming he had arrived safely in Houston Texas I was staring at a thermometer that read 39 degrees (102.2).   Yes indeed, our Aria had spiked a temp.  Her heartrate read in the 170s and I could see her little chest labouring to take in air.  It was 10pm at night and Asher was sleeping soundly.

Of course I panicked a bit, should I call the hospital (yes silly of course), but they would tell me to bring her in and what was I going to do with Asher?  This is the part where I sucked it in and realised I needed to ask for help.  I text my friend Stephanie and her and her husband arrived within mins to take Ash, just like they did the morning of Aria’s 2nd transplant.

Aria and I went to hospital and it soon became clear that a night in the PICU would be the best idea given her state of breathing and they wanted to watch her closely.  Finally at 4am we got to sleep.  Aria did so well, enduring 2 sticks for blood and a line put in her foot and an xray and lots of listening and breathing treatments, urine cath etc etc.

So we spent the night and day in the PICU and thankfully she improved, although she had a little spike in the afternoon overall she was better.  The verdict was a flair up of her asthma and probably a virus although all cultures are still clear.

This weekend I thought long and hard about God and his timing.  The hardest thing was making the decision not to tell Hamish that Aria was admitted and managing it myself.  I wanted to talk to him and tell him but I knew it would spoil his weekend and he deserved to have a rest from this crazy life.

I know God’s timing is always perfect, He NEVER makes mistakes and He is NEVER surprised like I was.  But sometimes I just don’t understand.  But that’s ok, it is my job to have faith.

It is very humbling being in a country for just under a year, having no family yet being able to call friends at 10.30pm at night to come and look after your son for two nights and a morning!  Thank you Brad and Stephanie!  And Elaine too for taking Asher to the zoo this arvo so we could get Aria home and settled.  She is doing great of course, steroids on board again and breathing is much improved.

Hebrews 12

¹Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.

We feel very surrounded by amazing people who we have learnt a great deal from.  It is easy to get bogged down with this life and it’s hardships, not that I didn’t, I was pretty upset at times.  But having such great people in our lives helps with keep your eye on the prize!

Mr MacDonald will fill you in on his weekend soon!

We are gearing up for Hamish’s Make A Wish Trip this weekend 😀 What is his wish?  A trip to Texas to watch his favorite team the Houston Texans at their home gound!  They are playing some obscure team, something cowboys ;) !!! Our friends Lori and Todd have made it possible along their parents and other faithful texan friends who read this blog.  It is wonderful to have such amazing generous friends here!  It is very exciting, except for me who is a touch nervous about having the kids alone for the weekend.  Actually looking forward to the challenge and being Queen of the Castle.

Aria is doing awesome still.   She started walking by herself on Saturday but strangely we haven’t seen it since.  But least we know she can do it!  She is also drinking her milk and eating plenty.  Also off o2 at night although sometimes we put her on.

The other good news is that we see the food she is eating is actually going thru!  It is coming out the other end digested in little bits.  We have gotten a few questions lately about Aria’s new tummy set up.  To clarify.  She isn’t on TPN/IV feeding anymore and 100% of her nutrition is going thru her new small intestine.   She only received a small intestine during transplant and her own large intestine/colon doesn’t work because of her disease and was removed at transplant.  SO the end of her new small intestine is brought out to the surface of her skin, called a stoma and that is how she passes her waste.  She has a little bag that sticks on to catch it.   Perhaps one day *maybe* she might have it connected to the right hole, but science needs to advance first.

The final installment in the Aria trilogy airs this Sunday, 8.30 am Channel One.  Aria’s story is also going primetime!  The TVNZ current affairs show Sunday is picking up her story and that will air 3rd of October at 7.30 pm.

Anyway- dinner time here I better go.  Aria is currently putting Daddy in time out, better rescue him!

Aria – a true inspiration

Dear readers, I hope you don’t mind me taking over the Blog for a few moments.

I am the infamous Dr E. I have looked after Aria and her family since she was a few weeks old. We have shared some real highs and some terrible lows during that time but we have always worked together to achieve the best for Aria. Our common goal was always to get her transplanted so she could enjoy a better quality of life – one where she ate and enjoyed food as her only source of nutrition. The challenges for achieving this were not straightforward and at times almost overwhelming – no intestinal transplant programme anywhere close to home; getting the timing right; having to ask both the government and charities for funding; striving to keep her as well as possible while we tackled all of these hurdles.

Well, all of those things have come together and she has now been transplanted (albeit twice). It has been a huge honour for me to spend some time with the MacDonald family this week. The last year has been awful for all concerned and I really can’t imagine how terrible it must have been for Anita, Hamish, Asher and their extended families. However Aria has now come out the other side and the fantastic news is that she is looking great! I had imagined I might arrive here to find a withdrawn little girl who was not very mobile or interactive, with oxygen, tube feeding and heaps of medications but the truth is far from it. Although she does have some tube feeding, a minimal amount of oxygen at night and a small heap of medications, she is chatty, funny, hilarious, comical, endearing, entertaining and she eats – LOTS. I have worked with children like Aria for many years and have never been so impressed by the amount she is eating only a few weeks after her discharge from hospital. Anita and Hamish very generously cooked for me one evening and Aria positively devoured the meal. She started with home-baked nachos with guacamole and boy, she was not giving them up until she’s nibbled each and every one. Then she tackled a chicken drumstick, as we all joked, cavewoman-style – here was Aria “Wilma Flintstone” MacDonald holding her drumstick aloft and chomping on it (a photo will follow as soon as I get back to NZ)! OK, so she still has a way to go to a complete recovery but even in the few short days I was with her I witnessed new achievements and an increasing sparkle within her every day. The hard work will continue for the next few months and then she will be ready to come home to New Zealand. There were times when this seemed unimaginable but now it is really something to look forward to.

Aria and the whole MacDonald family never fail to impress me. Their love and strength as a family, a couple, parents and a brother is palpable. But it is Aria’s strengths which are particularly special. To see this gorgeous little girl eating and enjoying her food has been truly special for me. It has been a pleasure and privilege to be her doctor all these years. As I leave the US for New Zealand, I feel a deep sense of admiration for Anita, Hamish and Asher and a huge degree of inspiration from Aria. Thank you MacDonald family for looking after me these last few days and for allowing me such a personal insight into your every day family life.

Has been a whirlwind week in the MacD house!  Hospital every day, fun, not really.

Very quickly- Aria continues to do AWESOME.  Walking heaps and crawling and a very happy chap.

AND more news.  At clinic on Thursday they decreased her feed and added in a tin of Pediasure, a vanilla flavoured milk drink with fibre.   It is about 200 mls/8 oz and we are getting her to drink it rather than put it into her feed bag.  So she has been very willing and drank 100 mls in the past couple of hours!!!  We are very much hoping she will at least drink a tin a day and be on the way to taking all feeds via mouth.  Her eating continues to come along too.

Also she has been able to go a night or two with O2!

That’s all for today, sorry for the short post.  BUT here’s a teaser for you- there is going to be a Very Special guest post soon!  Stay tuned!

First up and most importantly Aria is doing SUPER AWESOME! We are totally amazed at the 180 turnaround in her since she was discharged. She is:

Talking heaps

Sleeping thru the night (yay!)

Off oxygen during the day

Happy and contented

And…….Drum roll please……WALKING!          That’s right, she is on her feet and walking.  She holds our hands and can walk at least a solid couple of metres/yards maybe more.  Very very exciting.

And…….another drum roll please……..eating!   Yes in the past couple of days there had been a big change in Aria’s eating habits.  She will sit at a meal and ‘eat’ the whole time.  This involves putting food in her mouth and chewing with her front teeth.  If the food has a sauce then she will lick the sauce and a goodish amount goes down.  Sometimes there is a bit of coughing and confusion but she is doing really well.

The biggest factor in this change has been the dose of steroids that she is on.  It was to help her asthma but has had bigger flow on effects.

GOD IS SO GOOD!!!

Deuteronomy 10:21

²¹ He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.

We see it with our eyes everyday, a living breathing MIRACLE.   How blessed are we!?

In other news, the MacDonald family has been pretty busy.  Yesterday we got to go to outdoor church with Carol and Cordell and that was pretty cool.  Beautiful weather to sing praises.

In bigger news- Dr E is here!!!  In Omaha!  We were pretty happy to see her and got to spend some time with her on Sunday arvo.  She came to see Aria in action at PT today between hospital appointments and it was Aria’s best ever session.  Aria was on fire, crawling and walking and laughing.  We are so pleased she can see Aria doing so well.

Aria is in the Womans Day this week to if you want to check it out.  NZ only and no I can’t post it because I haven’t seen it either!  We are always the last people to see Aria’s NZ media stuff but that’s ok.

Anyway this week is also shaping up to be a busy one, we are in at the hospital every day!  Phew, but no worries, there are two beautiful kiddos to enjoy!

Guess what!?

We had our first full night sleep since Aria has been home in July!!! She didn’t wake once and slept like a log. We bounced out of bed this morning full of energy!

She had been sleeping well in hospital this week but we thought that was because she was woken every 2 hours and knew we were in the room so didn’t need to call out.

Today she was chatty and happy and standing up heaps. She even did it for a little youtube video we put together for our church. So exciting!

Unfortunately she has breathing treatments every 8 hours, one at 11pm and another at 7am so can’t really enjoy a sleep in or early night. But we are hoping this is the start of at least 8 hours of uninterrupted sleep. Awesome.

Our little family all sleeps under the same roof tonight!

Aria is home AND once again it appears this hospital admission has IMPROVED her health. She is chatty and happier AND standing heaps without us promoting her. She put on quite a show for our home care nurse this evening, standing up and turning around even. It was a hoot.

So there is a new unofficial diagnosis of asthma for Miss Aria. She is on a higher dose of steroids and nebuliser breathing treatments and this seems to be really helping her. As there is no family history of asthma we are hoping she will grow out of it and it is secondary to her lung disease from being intubated for so long.

Also we know that Pseudomonas in her lungs still. We were hoping that it was gone but it has likely colonised in her lungs. BUT she is on an strong antibiotic that she inhales as another breathing treatment. So we are praying that this will finally knock the Pseudomonas on the head.

Asher is very pleased to have his sister home. He struggled a bit with her and one of us being in hospital. We feel pretty sad about that. But Aria actually coped really well and was pretty happy there. But she was keen to get home when we were released.

All and all a two night admission is a pretty good deal and we have made progress with Aria’s treatment. Thankfully it had nothing to do with the function of her transplant organs or anything long term to be concerned about.

Well so far we know for sure that Aria has rhinovirus or the common cold. The question is if there is something else as well or is Aria just super vulnerable to colds because of her chronic lung disease and immuno-suppression?

We’ve made some gains today with her breathing, treatments are less often and the oxygen support is lower but she is still on quite a bit of help.

Tomorrow we will learn if there are any bacterial components to her illness.

The plan for us as always in hospital admissions is find out what needs to happen for Aria to get home and then chase that like a pack of wild dogs. At the moment that consists of 8 hourly treatments (currently 4 hourly) and ideally no oxygen during day and only 1/2 a litre at night (which would be as good as she ever was at home). We are in negotiation on the last part but we can live with the first part. Please pray that Aria would progress towards those outcomes, we would love to have her home again by or during the weekend.

Now I know you all want to hear the cute Aria story, but first I’ll give a quick status update as to her current health. For those just tuning in she is in hospital tonight (and for more nights to come, how many will depend on what exactly is bothering her) with what may be a pneumonia or maybe just a virus. Her breathing has become quite laboured and she needs some extra support and treatment that only the hospital can provide.

They are being pretty aggressive with the treatment, breathing treatments every 2 hours, doses of steroids and strong antibiotics just in case it is the dreaded Pseudomonas rearing its ugly head again. Please pray this combination gets Aria well again and that there won’t be too much lost ground in terms of getting Aria oxygen free again. Anita is staying with her tonight and hopefully there will be sleep involved for everyone although 2 hourly treatments may make that challenging, please pray for sleep!

Now for the cute story: Asher came into hospital with Anita this afternoon to do the night shift. Asher being his normal boisterous 2 year old self was being LOUD. After taking him on little errands with me to try and keep him occupied it was time to give the ward a break and time for Asher to go. My cunning plan was to take Asher down to the zoo to tire him out so he’ll go to sleep well tonight, but I didn’t want Aria to know just in case she got jealous. Now when it came time to leave Asher was reluctant to go, he loves being with Aria in hospital and always misses her when she’s there, so Anita told him that I was going to take him somewhere else fun to get him to want to leave. Aria almost immediately says “Asher go zoo”, excited that Asher might have the opportunity to go to one of Aria’s favourite places. Again Aria amazes us with her generosity of spirit and love for our family. After having a fairly tough day, she still wants Asher to have good times. Love that girl to bits!

After a pretty good night Aria spiked a temp this morning to 38.4 and her o2 is up to 4 litres. Our machine only goes up to 5 litres so we were getting into some nervous territory. Aria is being admitted directly to the ward, no waiting around.

Hopefully we won’t be there too long. Thankfully this admission is non transplant related. No dumping or concerns with her transplanted organs, it is just a cold. But with the state of Aria’s lung and her immune suppressed state even a cold can mean a hospital admission.

Please pray Aria improves quickly and doesn’t continue to get worse. Please pray for Hamish and I. One of us will ‘sleep’ at hospital with Aria and the other will be home with Ash. Thankfully Ash is at daycare tomorrow so whoever does the night shift will be able to come home to nap tomorrow.

Aria reckons she is off to starship. I think she thinks all hospitals are called starship 🙂

UPDATE:
Wow- things happen impressively fast here. Aria has been admitted to a nice big room and is sitting watching TV at a table with Ashie. She has done so very well with all the poking and prodding! Very proud of her! She has had a chest xray, bloods done, luer placed for IV ABX, hi flow o2 turned on to open up her lungs and breathing treatment done. And paints and crayons delivered- most important! All in the space of 2-3 hours. Everyone wants to stay ahead of the game so this doesn’t develop into anything sinister and we are really grateful. Still hoping it is just a virus but starting ABX just in case of a secondary infection in her lungs which she has had before.