Archive for February, 2012

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.

Musical mobile and a nice moment

February 28, 2012

Rafa is still a bit glassy eyed and jittery (the methadone and ativan is helping with that) and we’re back to having more episodes of his alarms going off as he wakes up / goes back to sleep / fidgets about.  Since he is awake at times now one of the nurses attached a musical mobile to his bed.

The mobile plays The Queen of Sheeba, which is the piece the string group at Mum and Papi's wedding played as Mum walked down the aisle.

 He’s still on the hi-flow respiratory set up but they are hoping to move him to a simple cannula soon (i.e. change the system of oxygen that goes up his nose to give him less support as he manages better on his own).  He still hasn’t managed to eat either, but we’re hoping that he can do that again soon too. 

Despite not too many changes today, since fewer machines and tubes are hooked up to him we’ve been afforded another momentous milestone…


A tour of Rafa’s new digs

February 28, 2012

I wagged a day from the office to visit Rafa in his new digs.

I played with the Get Well Town system whilst Mum and Papi caught up with Rafa's medical team at the morning rounds. I thought the doctors and nurses were all about to go to bed because they were all dressed in their pajamas.

Then we went exploring. Each floor has an animal theme. In the elevator you have to find the button with that animal on it to get to its floor. I liked pressing ALL the animal buttons. I also liked the bird floor with the terrace gardens and the big mosaic tree stump.

We went from floor to floor trying out the different lounges and playrooms. There is also a little gym (which Mum was the first person to use - taking her first real breath this week, she says), and a theatre, a classroom, a resource room full of medical journals, a teen centre, an activity room and a computer room. This family lounge on the fourth floor was so peaceful until...

...I turned it into a major truck route.


After a morning of adventuring we went down to the Kite Cafe for lunch. Now where is Papi with my sandwich?

By Ana


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.


Father and son

February 25, 2012

Strong enough for a handshake with Papi.

Time capsules

February 25, 2012

Rafa continues to rest well without much change from last night so morning coffee was taken strolling through the children’s hospital.  By chance we found some time capsules that were made about 8 weeks ago.  Each unit was asked to collect together a representation of the care given to patients today.  It’s filled with items that are currently part of our everyday: intubation tubes, IV catheters, heel warmers, a resusitation bag and mask, Midazolam (Versed), the hand sanitizer foam we use before we touch Rafa and a “foam in foam out” sign, even a BBG (booger be gone).  There’s paperwork such as staffing sheets, orders and manufacturers brochures for equipment as well as photos and cards, staff sentiments and coffee cards from the hospital cafe.  Tomorrow we will be part of the end of an era, and part of a new beginning.

Imagine being there to open these in 50 years time.

The best medicine

February 24, 2012

Rafa was given some special medicine today and it made him the most relaxed we’ve seen him all week.  Better yet, we all benefitted from it.

Whilst he’s still on life support and now also combating some of the knock-on effects of the treatments (such as a rash from a reaction to the antibiotics) we’re seeing lots of positive signals.  His O2 has been weaned back again and is now at 30% and he’s had a VEC free day.  Yipee!

Roomie #2 was well enough to leave ICU and go to the acute floor but with every patient well enough to leave there is another sick child that needs a bed.  In the reshuffle to make space for new patients instead of us getting a new roomie we moved into someone else’s room.    The move went well and it’s good practice for the weekend when the entire children’s hospital is going to close and we’re all going into a super duper ultra swish brand new hospital next door.

(The Harpist is Michael Sasnow who works for the Children’s Cancer Association and is part of the Music RX team.  Thank you Michael for being a wonderful part of Rafa’s care).

Abuela has arrived!

February 23, 2012

Abuela arrived from New Zealand today to help out whilst Rafa is sick.  It’s a sad reason that she’s come over to see us but we’re all very happy that she’s here.

She loved hearing about what I've been up to recently. It's just like chatting on Skype except she's really here!

She gave me some animal soaps which we played with after my bath. Abuela said that they were supposed to come IN the bath tub with me but I thought they were too pretty for that.

Then we read some books together before bed. Afterwards we took the books into Abuela's bedroom because she promised me that we can read them together again tomorrow morning. I hope she likes reading at 6am.

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.