2010 October - Aria MacDonald

UPDATE:  Scope looked beautiful- their words!  Nice and shiny and you could see the vili!  Aria did awesome too, really liked seeing the insides of her intestine, strange girl!  Lots of bloods taken today, will get results at clinic tomorrow

We sail along in our little boat.  Sometimes a storm comes along, perhaps it is just a rainstorm but it feels like a hurricane.

Today our concerns where confirmed.  Aria has been bleeding out of her bowel.  The past couple of days her stool output looked really black and today it looked red.  They did a test to see if there was blood in it and there was.  Also her iron count/hemoglobin has dropped quickly from last week.

It is really hard not to let this kinda news rock you to the core.  Based on all our experience this year we continue to be fragile people.  This bowel is very very precious and any concerns about it are scary.  There is not another shot at this.

Tomorrow Aria has a scope planned.  They put a camera thru her stoma and take biopsies.  Rejection is NOT on the list of concerns.  Her intestine continues to absorb very well, in fact she has gone down on some of her meds.  She isn’t vomiting.  But her intestine isn’t behaving like it used too and it will be good to know why.  Perhaps there is a little irritation and this caused a bleed.  Maybe we won’t find out the source at all.

So scope tomorrow and clinic on Thursday to find out the details.  We rest patiently in the arms of God knowing that He will continue to do miracles for Aria.

Have got a few emails saying the Sunday story link isn’t working anymore.  Sorry we are not sure why it has been geo blocked to NZ viewers only.  We hope to find out and get it working again.  We are quite disappointed.  After all these hours of filming it was great to have something online to show our friends and family overseas.

Aria’s story aired last night on Sunday.  We have had nothing but great feedback- thanks to all those who posted on Facebook and via the contact form.

Americans and Australians and everyone else,  Please click here to watch the three parts

We were pretty happy with it, tackled the obvious questions well.  Over played the time spent in Starship, she wasn’t there a huge amount although it did feel that way at times.  Isn’t Dr Botha great?  They are all great and we are thankful to everyone who was involved.

This is a picture Aria did all by herself AND she wrote her name all by herself.  We still remember the days very clearly where her little hands used to shake so much she couldn’t hold a pen.  Now she can draw a rainbow, put stickers on the matching colours and WRITE HER NAME 😀  We are so proud of her.

We had clinic on Thursday.  Aria is still battling a little cold.  But they dropped down her immune suppression med so it should allow her immune system to respond a little more.  Thankfully we can keep her home and not take her in to hospital.

Tonight Aria’s story airs on Sunday We are nervous for sure.  This is primetime TV and more journalistic and current affairs than nice documentary style like Attitude.  Still we felt it was the right thing to do and the Sunday team have been kind and understanding towards us.

So- New Zealanders- be sure to be in front of your tellys at 7.30pm on Channel One today.  And feel free to comment here or contact me to let us know what you saw.  We don’t of course get to see it under the DVD goes in the post.

COMMENTS We are turning the comments off for a day or so.  Based on ours and other peoples experiences we feel it is the wise thing to do.

Got to have a bit of a giggle really don’t you?

We left hospital yesterday evening with a new nose noodle flushing nicely.  We flew out the door as I was in a hurry to get to church and pick up Asher, who had been at the Zoo with our friend Elaine.  Elaine was also putting on a dinner, as she does every three months before the elders and deacons meeting, and I was excited to help her wash dishes etc.  So I made it about 5 mins late!  Not bad!  Hamish took the kids home and I stayed to help and had a fun time with Elaine and Stephanie and learnt a lot!

Got home at 8pm and went to give Aria her meds at 9pm.  Her line was not flushing! We wiggled it and pulled it in and out and just couldn’t get it to move much.  Finally managed to get her meds thru it but realised at about 10pm we needed to take her back in.  She needed her feed and fluids and being asleep she couldn’t drink them.

Thankfully there was an excellent physicians assistant (PA) on last night who decided to pull the nose noodle completely out and start with a fresh one.  Sure enough when it came out you could see a permanent kink in it, obviously all the times we tried to put it in meant the plastic had weakened.  She placed a new one without problems, xray came, checked placement and out the door at 2am!  Phew.

Aria is still spiking temps and her outputs are still high (not high enough for the team to be concerned though) But she is walking around and happy and dead keen to go to PT today!

Aria did so awesome this past day.  She said that having a new nose noodle put in is the worst thing, worst than an iv poke or needle stick for blood.  It looks pretty tough, she hates it.  But she endured lots of pulling it in and out.  She waved bye bye to the nurse and PA last night and did this fist pump high in the air and said ‘wooohooo’ as we walked out the door.  Honestly- who is that perky at 2am after being messed with all day?  Aria- that’s who.

Well today was a little full on. Overnight Aria spiked a fever and also her nose noodle (feeding tube that runs to her stomach via her nose) stopped working.

This meant today was spent initially playing phone tag with the hospital and then trying to fix/replace the nose noodle with our home care nurse and then the hospital staff.

In regards to the fever first, it is the current opinion that she has picked up another virus. This is an okay outcome for us as it does mean we can keep her at home. These little virus’ are going to plague Aria a bit because of her immuno suppression. We are trying to be careful with her but I guess sometimes your just going to get these things despite your best efforts.

As for the nose noodle story it goes a little like this. Firstly the noodle finally stopped working for good right on morning medicine time. This meant that Aria was faced with the prospect of getting none of her important medicines. Thankfully Aria was kind enough to drink her main anti-rejection medicine which is the most important one. We then played phone tag with the hospital and our home services company until we got a plan and the home care nurse to replace the tube. Strangely enough this normally straightforward although upsetting procedure ground to a halt when her existing nose noodle steadfastly refused to come out. Not wanting to do any damage the three of us (the nurse, Anita and I) decided not to yank on it and leave it to the hospital staff how had asked to see us because of her fever. Aria sat there saying “Not come out”, I think she thought it was a bit amusing.

So we packed off to hospital to get them to fix it instead. After a fairly long wait we finally got a room in the treatment centre and the nurse practitioner who has been there and done that, more forcibly removed the nose noodle, Yay for her. Now for trying to get one back in. The nurse practitioner got it back in pretty quickly and sent us off to X-ray to confirm its placement. Aria was a star down in X-ray, having 5 pictures taken and her taking all the required positions without complaint. Once we were done, we were back to the treatment centre to have the ok to go home…..

Not so fast, it was looped in the X-ray and we found it wouldn’t flush through. So out it came and it had to be replaced. Now this time she couldn’t get it down no matter what we tried. After several attempts and Aria being most put out by the affair we took a break while a new nurse was coming to try. Just before the new nurse arrived to try, we decided to pray with Aria that it would go in first time. We prayed, the nurse arrived, we positioned Aria a little differently this time, and it went in first time with hardly a drama!!

Its so exciting to see God answer prayers prayed with Aria.

Aria is still walking all around the house.  Now she is walking at the zoo, at the shops and everywhere we go.  It is very cool.  In fact she is down to one PT session a week!

Also last week she did an eating and swallowing test and the results came back great, there is no reason why she can’t eat and drink normally.  We kinda already knew but wanted to check nothing was aspirating into her lungs.

And, Aria is brushing her teeth!  She loves it too and is doing a great job.  Yes there are all kinds of reasons why teethbrushing has not been high on our list for Aria, unlike Asher, but it has been great to get success in this area.

Sunday crew (used with permission)

We had a visit from the team from Sunday (like 60 Minutes).  A reporter, producer and cameraman followed us for two days and we sat down to a fairly intense 3 hour interview.  Our house was transformed into a TV studio complete with lights and black out curtains, we even had to turn the fridge off!  It was funny.  It should air next Sunday 17th of October 7.30 pm Channel One

On the sad face side of life, Aria’s stoma outputs continue to be high which is ok.   Her outputs have always been 300mls per 24hours which the transplant team describe as ‘phenomenal’.  Low outputs mean her new intestine is absorbing all the food it is given.  Now they are 600mls, she has another couple of days of ABX and once they are finished we are hoping it goes back to normal.   But even with the high outputs her blood work is still good, she is absorbing all her nutrients, we have only had to increase the sodium bi carb.

This week has been a struggle for Hamish and I.  The diagnosis is most likely Homesickness.  Funny I have never really felt this until this week.  Knowing that there are no more kiwis likely to visit now before we leave was kinda tough.  Plus still feeling really sad about missing Alex’s wedding.  Plus struggling with making a decision about when to come home.  Sometimes we feel like we have made a decision and then something changes and we question it all over again.  We are praying hard for clear guidance from God.  We really want to come home, we feel there is nothing more this team can do for Aria and lets take her home ASAP so her family can enjoy her.  BUT it isn’t that simple.

We are weary.  Torn between grieving from what we and Aria have been thru this year, it still hurts so much and we feel like no one understands.  How could they?  It is an impossible situation to even imagine up.  But then we want to thank God for this opportunity and rejoice over His greatness to Aria.  We should be ‘ok’ now, getting over it.  It is harder than I thought it would be.

We have some BIG news!

The culture from Aria’s lungs came back with NO pseudomonas!!  She is officially sterile in all the places she should be.  It is an amazing miracle upon miracle.  This bug has been her nemesis since the first transplant and had morphed several times to become almost completely resistant to all antibiotics (ABX).  We only had one morph to go and Aria was in a very bad place.  And then it spread to her lungs. BUT the previous admission they started her on a strong ABX that she inhaled three times a day with the hope it would knock it on the head and it has seemed to.  GOD IS GOOD!

AND Miss Aria is walking pretty much everywhere!  It is kinda strange but very cool.

We have had our first experience of ‘dumping’ this week.   This is bowel transplant talk for an increase in her stoma output.  In everyday laugauge this is called diarrhea.  Aria’s output are always 300mls a day- this is awesome!  But one day they jumped to 600mls.  We quickly called and they decided that it was ok.  We on the other hand did not.  Later she spiked a temp to 38.3 AND she was sleepy.  We called again- we are coming in and we want you to see her.  Turns out the cultures had come back and reason for Aria’s admission on the weekend was likely an ear infection and this bug can also cause diarrhea, so they checked her out and sent us home with ORAL ABX.  Wow, just like regular people.  Her output is still up so we are praying it will come down soon, but at least it isn’t increasing.

We have had the privilege of a stream of visitors this year.  My sister in May, Hamish’s parents in July, Emma from Attitude in August, Dr E just last week.  And this week we hosted the Boyd family.  Mum and Dad Peter and Janet and their kids Gabriel, Madeline and Callum.   Peter was our youth pastor when we were young and he married Hamish and I.  His ministry God used to form the big building blocks of our knowledge of God and our faith.  Anyway, we had a super fun time with their lovely family this week.

So Friday afternoon was a quiet sad time after the Boyds left.  We have missed Emma and Dr E when they have gone and now there was 5 people to miss this time.  It is hard not to be homesick too.  When Alex was here Aria was super sick and when Hamish’s parents were here Aria was transitioning home.  So there wasn’t really time to enjoy their company but it has been different with recent visitors.

We muddled thru Friday also realising my sister was getting married and I wasn’t there.  My strategy for coping- denial.  So I have signed out of Facebook and screening emails for the next couple of days.   Yes- it is the same thing as putting my hands over my ears and going lalalalala-super mature.  But if you had walked a mile in my shoes this year then you would get it, which most people, including my sister, do thankfully.

Still our super cool trip to Disneyworld is drawing closer.  And we would probably not have had the privilege of three days with the Boyds either should we not have been on this crazy journey. Or Hamish’s fab Texas trip!  So God gives and He takes away.  He is still Good!

UPDATE- We are not on Sunday (tv show) this weekend.  They are actually now coming to Omaha to interview us and get their own footage.  So will we keep you posted.

First of all let me say a HUGE thank you to all that made this trip possible. To Todd and Lori, their parents, Carol and Cordell, Kendall and Wayne, Brad and Stephanie, Eric and Elaine and Kids you guys are awesome, I am inspired and humbled by your generosity and servant hearts.

For those who don’t know me well, the Houston Texans are an NFL team (American Football) and I am a genuine fanatic. Going to a game at their home stadium in Houston has been on my ‘bucket list’ since they team was established in 2002. Aria’s coming to America took that dream from “yeah right” to “hmmmm, we could make this happen”. Thanks to Todd and Lori and others too, it did happen and it was an amazing experience.

Flying down to Houston Saturday afternoon was a strange experience. I don’t think that I have done much of anything wife and kidless since before Aria was born. It was a strange feeling of freedom and loneliness. Hobby Airfield in Houston was a weird place, the main entrance was under the carpark and had abot 8 lanes of pickup/drop off zone, creating an environment consisting almost entirely of exhaust fumes. I got a taxi to the inn and immediately found behind the counter a fellow Texans fan who was almost as excited about the game as I was. He invited me to his tailgate, which to those in NZ can be best described as a BBQ/party in the parking lot of the stadium complete with food, drink, games, tvs, loud music and endless team flags etc all done under tents.

Sunday morning Todd came, all the way from Dallas, and got me bright and early (12pm kickoff for the game) and we headed to Reliant Stadium. Now Reliant is an extraordinary place. It has a retractable roof, is fully airconditioned, seats about 75,000 people, has extraordinary facilities and large carparks all around it. As we walked up to the stadium, we were surrounded by tailgaters, which is something NZ should embrace it really added to the atmosphere. The stadium itself is huge and has stores, tons of concession stands and lots of things to see and do around it.

Inside the stadium is also impressive, it seems no matter where you sat or went you felt close to the field. TV screens were scattered all through the concourse so you never missed a moment of the build up or action. We were seated in a section that seemed to be about 50% Cowboys fans (the opponents and the instate rival to the Texans) which was great for Todd who was also a Cowboy fan. It was neat to see all the pregame drills and rituals and the intros were very cool.

The game itself was a sorry affair for the Texans which didn’t matter so much because the experience of being there overwhelmed the loss. It was interesting to note that American fans seem to be just as proud to leave early when the going tough as New Zealand crowds are. By the end of the game there were probably more Cowboys fans left than Texans fans, which is a wee bit shameful on the fans of Texans football.

After the game Todd took me to a BBQ joint which was awesome. It had big rolls of paper which served as ‘plates’ and the food was great. Todd and I indulged in a pint of Peach Cobbler….. each, eyes > belly, for sure.

We then drove ‘home’ to Dallas, which was a great trip, not so much for the Texas scenery but the really great conversation that was enjoyed between two new friends. We also stopped in Fairfield, home to one of our New Zealand Americans and stopped in at their Dairy Queen which seemed to be unchanged since it was built back in the 60’s, it was very small town America.

Early Monday I was back on a plane to Omaha, feeling happy and tired. Stopping over in St Louis, Anita revealed to me the news that Aria was a guest at the hospital. Thanks Anita for keeping things quiet and to those who helped her manage Asher during that time. Thankfully Aria got out just after I arrived in Omaha, and she was none the worse for wear.

So all in all, it was an amazing weekend, shared with an awesome guy, and enabled by awesome people. What a blessing.