Archive for the ‘Big Moments’ Category

As seen on TV

December 16, 2015

We had a TV crew from TVNZ at our house today. They filmed us eating honey on toast, reading, playing and riding our bikes around the lake.


And then they gave us New Zealand chocolate for our efforts! Anytime TVNZ, anytime.

bed miles

February 29, 2012

Happiness rippled through the building last night as the kids that were able to leave their rooms went up to the top floor movie theatre where popcorn, soda and candy awaited them.  Rafa meanwhile was having a party of his own in his room.  He’s been on a cupcake / potato chip and banana blend (dextrose, saline and potassium IV fluid) but through the night as he managed to take more milk from Mum his party drink was decreased and completely stopped.  (That took a bit of work, mainly because it looked like his throat was still sore from the tube, but eventually he remembered what to do).

We tried taking the cannula off, but that didn’t go so well, so it’s still on now but we have reduced his CPAP schedule to “as required” and he hasn’t needed one since late last night.

This morning was even more exciting.  We’ve just been given our ticket to ride out of the ICU and into the general care children’s ward.  Rafa’s bed is sure building up the bed miles but that’s good when we’re heading in the right direction.


February 27, 2012

Over the last few days the doctors have been weaning the pressure and amount of oxygen going through Rafa’s ventilator and using methadone and ativan to help him come off some of the drugs he had become dependent on.  All to prepare for today.  Extubation day.  With the tubes out and the ventilator pushed aside for the first time in over a week, Rafa took a breath by himself.

Bye-bye ventilator.

Look at me – no tubes down my throat!! Just a nasal cannula delivering extra oxygen.  That’s much more comfortable.

The big move

February 26, 2012

The entire PICU staff and an army of volunteers came in today to move the unit into its new home next door.

One by one the kids were prepared for the move and taken over to the new hospital. We had to wait a long time for Rafa to be ready since he needed special mobile equipment for the move.


Finally it was his time to go. Rafa had an entourage of seven medical people.

We weaved through lots of corridors, went up and down ramps and had two elevator rides. It's a good thing someone knew the way or we could have gotten very lost.


There were even more people waiting for Rafa in his new room to help him get settled in.


The new rooms are large and modern with their own toilet and rest beds. They have big windows which let in lots of natural light. Twice as many rooms over here also means no more room mates.


In each room there are patchwork quilts (made by Project Linus) and soft toys which are gifts to the first kids here. Although I think the soft toy may "go missing" before Rafa knows anything about it.


Routines, the rollercoaster and another roomie

February 23, 2012

We have a daily routine established around staff shift changes, the daily x-ray, respiratory team and pharmacy visit, doctors rounds and, importantly, what to get (and to stay away from) at the hospital cafe.

We are getting some small signs of improvement with Rafa.  His oxygen has been turned down to 35%, his heart rate and respiratory rates are settling down and his oxygen saturation sits around 98-99 (the aim is for it to be at 100). He’s getting less VEC (paralyser) and also (sometimes) coping with coughing and being moved without having a bronchial spasm which sets off another bout of his O2 saturation dropping into the 60s (the alarms go off when it drops under 90) and starts his little chest racing up and down as he’s trying to catch a breath.  The problem with this virus though is it’s a bit of a rollercoaster.  We think he’s getting better but then he’ll have another spasm.  He gets another dose of VEC.  They up his fentaNYL (a painkiller) and we wonder if he is getting better all.  Then his CO2, which seemed under control, goes back up again or his daily x-ray shows more gunk in the lungs than the day prior.  “They’re very fluffy lungs” the doctor tells us.

Our last room mate was well enough to leave and as quick as he left we got another one.  He’s in his Mum’s arms feeding and is looking like he’ll be leaving soon too.  His Mum sits in front of reality tv for most of the day – as if there isn’t enough drama already in the room.

What words can do

February 22, 2012

We have been overcome by the beautiful words left for us here and on facebook.   We cry when we read them and then go back and read them all again.  Each and every message gives us strength.  From close friends and family back home, from old friends we haven’t seen in a long time and from new friends in the US who we have only just met, in fact, we’ve even had well wishes sent from people who read the blog that we don’t know at all.  We are so grateful to all of you for reaching out to support us through another long day.  Rafa hasn’t improved much yet (although the good news is he hasn’t gotten worse either) and we thank you all for rallying for him.

An update from the ICU

February 21, 2012

We’re exhausted.   With every alarm beep we jump up as if we are about to spring into action but can only stand helpless at the end of Rafa’s bed watching the doctors and nurses as they work to bring his vitals back into range.

The doctors are telling us he is probably going to get worse over the next day or two.  We can’t imagine what worse is.

We have had some relief late this afternoon.  They’ve switched his ventilator to one that delivers oxygen in a different way.  Research is currently being carried out between the two types of ventilators so they are trying to keep all the respiratory problem kids on the machine they started with when they came into the ER, but the doctors felt that they just needed to try something else for Rafa.

They’ve also changed how his muscle relaxant is administered.  They’d like to give it just as required to minimise its use but the drug begins wearing off after about an hour and that’s when Rafa starts biting down on the tubes, obstructing the air flow, or hyperventilating and not giving the machine a chance to get a good dose of oxygen into his lungs.  Instead, they’ve decided to give him paralyzing drugs constantly through the drip.

Whilst these changes have brought Rafa’s heart and respiratory rates back to a good range (brilliant news) it’s hardly a comfort that he’s had to be so dosed up on sedatives and paralyzers and antibiotics and diuretics and a whole heap of other things from the nurses arsenal to be stable.  He’s full of tubes delivering milk and oxygen, and covered with wires measuring heart and respiratory rates, oxygen saturation and temperature.  There’s an IV in his hand, another in his head and a PICC line in his arm where they draw blood several times a day to check his blood PH and CO2 levels.  He is getting extremely good care, we are fortunate for that, but nothing feels comforting.  All we want to hear is he’s getting better.  That he’s going to be alright.  That he’s coming home soon.  That’s all we want to hear.

Rafa in ICU

February 21, 2012

Rafa is sick.  Very sick.  He can’t breathe on his own due to a respiratory virus and a bacterial infection in his lungs.  He’s doing ok but the next couple of days are likely to be challenging.  Any prayers / good vibes / positive thoughts / finger and toe crossing for Rafa would be greatly appreciated.