Why don’t I learn to keep my big mouth shut!!

No sooner as I posted yesterday’s blog, than I had a text
from mum at the ward saying that Cian’s temperature had spiked; his breathing
had become erratic; and they were calling in the doctors.

It looks as though Cian had picked up a virus! That storm I predicted hit a little sooner
and in areas we didn’t anticipate.

All through his time on Rainbow Ward since his first episode
subsided, Cian’s observations in terms of blood pressure, heart rate, pulse
etc. have been a little unpredictable; but his one constant was always his
temperature, which has always been normal.
So this was a concern.

It is not uncommon for patients to pick up illnesses on the
ward, as chemotherapy attacks the immune system and leaves them almost indefensible
to nasty bugs that they would ordinarily be able to fight off. And the time of year, together with mild but
damp weather does not improve the situation.

The number of rooms on the ward where the word ‘Isolation’
has been posted on the door has seemed to increase over the last few days.

Cian was immediately put on antibiotics, which had an almost
immediate effect of Cian’s symptoms. By
the time Dylan, Bethany and I arrived down from the upstairs accommodation in
the morning, Cian was in relatively good spirits.

But that overnight episode did come with consequences… his
planned chemotherapy was put on hold; Cian is now attached to more tubes
supplying him water and antibiotics; he needed a urine test to identify the
infection; and he needed an x-ray of his chest to ensure there was nothing else
to be concerned about.

Whilst all this was going on, Cian had another physio
session and play in the playroom; while I took Dylan and Bethany swimming; and
also out for a spot of lunch.

One of the issues we face is food. Cian is supplied grub from the trolley that
comes around 3 times a day (4 if you include the snack run). Most of the time he will refuse this, and
settle for a ham sandwich. The rest of
us have to fend for ourselves! We are
given all the facilities needed to cook a healthy and nutritious meal; but what
they can’t supply is the time.

There is a great board in the parent’s room where anyone who
stays at the ward can post their favourite and most convenient places nearby
for food, together with telephone numbers and directions. Who needs Google??

I decided to take Dylan and Bethany to the Heron Marsh in
St. Mellons as a treat. It meant that
they would have a full meal, plus the distraction of a soft play area.

When we got back, it was time for Cian’s x-ray. Now there are not many places in the hospital
that I can honestly say I look forward to going; but the Noah’s Ark Radiology Department
is something to behold!

Cian and I have been a few times, but this would be a first
for Dylan and Bethany.

The reception area is filled with ambient lighting;
interactive walls and floors; a toy mock-up of an MRI Scanner with character patients
to try out; and a number of other cool games and toys to keep patients and
carers amused.

Most of it was supplied by Latch, and is known as
‘LATCH-mosphere’.

The radiology rooms also have giant screens on the walls and
ceilings that are used as distractions whilst the scans are taking place. It really is an Aladdin’s Cave of cool tech;
and I challenge any techy nerd out there not to be impressed and come away with
new ideas to add to ‘pimp up their crib’!

So when Cian went for his x-ray with mum and the nurse, I
impressed Dylan and Bethany with my skills in the reception area. It was even a little disappointing when Cian
arrived back and ready to go back to the ward… spoil sport!!

But when we got back to Rainbow, Dylan and Bethany was kept
amused by one of the support workers from Latch who was helping them with Cian’s
Slam Attax Wrestling Card Collection.

I have mentioned Latch quite a bit, who have been an amazing
resource to everyone who finds themselves in this position.

I have asked them to post a guest blog on this site, so they
can tell you about the work they do; but more relevantly what they have done
for Cian and us; and what else they can offer us. I will probably do this with the rest of the
organisations and charities, as it will at least change the tone of this blog
every now and again.

Cian’s condition remains stable into the evening and he is
sleeping peacefully (I am on Cian duty tonight). We will need to wait for the morning for all
of Cian’s test results to come back, and a decision made whether to go ahead
with the chemo!

Can I thank everyone for their comments on here. It is really encouraging
to know that people find these blogs informative and interesting. If anyone has any questions, please don’t be
afraid to ask. I am always asking the
professionals here questions, and they haven’t told me ‘to do one’ yet!