0

Taking It Steady

Hi everyone

It’s been a fairly uneventful week on Ward 2 this week.  I’m feeling pretty good and have been enjoying lots of playing with Mummy and Daddy.  I’m getting pretty tickly and giggled lots the other day!

image

I’ve been back on my milk for most of the week and I’m just having it through my NG tube.  Mummy has now been signed off to do my feeds and Daddy isn’t far behind!  I’m up to 7ml per hour so I’m nearly back to to what I was having before my surgery.  Hopefully this means I can have my PN reduced soon and then I might even be able to escape from the ward for a little bit.

image

Practising sitting up with Mummy's help

The surgeons are happy that the operation went well and that I am pooing so they won’t be checking on me anymore.

Dr Hartley came to see me the other day and gave Mummy a pretty graph showing my billarubin levels and they’re looking OK at the moment…but they need to come down further.  I also had a blood top up this week as my haemoglobin had dropped.

Mummy and Daddy have rearranged my room this week as I always look to my left and they’re worried my head will stay a wonky shape so they’ve tricked me and moved my cot so I have to turn the other way to see what’s going on!  I only have a boring wall to look at otherwise so I suppose they’ve won!

image

Me turning my head the other way for a change!

That’s it for this week!

Speak to you soon

Oliver
X

2

New Year, New Hope

Hi everyone

The good news is Oliver recovered from his bronchiolitis and line infection in time for Christmas. Oliver clung on to a trickle of oxygen but I gave him a talking to on Christmas Eve and he did as he was told and was in air and full of smiles on Christmas Day.  Santa brought him a jumperoo which he loves although his little legs don’t yet touch the floor. He was spoilt rotten and has lots of lovely new toys and clothes at home waiting for him as well as presents donated by Birmingham City FC, Starlight, Radio Lollipop and the lovely nutritional team.
image

Oliver is coming on massively with his development and is now full of smiles and giggles.  He was assessed by the physios on Monday and is on track with his development for his corrected age of almost 4 months but needs to be persuaded to have some more tummy time. 
image

Both Paul and me have started our PN training and yesterday we had our home assessment by the community nurses to discuss PN at home which was all very positive.

So while Oliver has turned a corner and seems to be doing well we were optimistic that his stoma reversal would take place shortly…however we were dealt a new blow yesterday when the liver consultant Dr Hartley said his liver is a cause for concern and he cannot be reconnected until they are sure his liver can cope.  It’s a catch 22 situation as for Oliver’s liver to recover he needs to tolerate more feeds and less PN…but that can’t happen without reconnection which poses a threat to the liver at the moment!  Frustrated doesn’t come close!  The next steps are to do an ultrasound on his liver and spleen and to do a liver transplant assessment which will take a couple of weeks.

We remain hopeful his liver is stable enough for the reconnection as we don’t even want to consider the need for a transplant right now….we just want our boy home.

Here’s hoping 2014 will be a more positive year.

Fran
X

image

My awesome family on Christmas Day