Whispers…. Making Progress

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Our gorgeous boy

Hi everyone

We’ve had a good week at Birmingham Children’s and this week Oliver moved to Ward 2 as his liver transplant assessment has been cancelled because his liver is not as bad as was suspected. It will continue to be monitored but hopefully his jaundice levels will start to fall.

Oliver is gaining weight well and tolerating his feeds of 26ml 3 hourly.  He was 12lb 11oz when he was last weighed!

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Oliver will soon be catching his sister up!

After several days of no news on Thursday we met with the gastro team who advised that they propose reversing Oliver’s stoma before Christmas.   The decision to do this is largely based on his liver damage which is a result of him needing a large amount if time on TPN and to wait for his small bowel to grow would take a very long time. This is the moment we’ve been waiting for since August so we’re over the moon…but also apprehensive.   One thing’s certain, we won’t miss leaking stoma bags!  His poor skin is getting really sore as the bags are leaking more… having a washing machine on the ward is proving a god send!

We also met the team who will be training us up for home TPN and we will start our training tomorrow (9th Dec).  We will also need a home assessment to make sure we can manage TPN from home and identify any adaptions we need to make to our house.  After 6 months of uncertainty and not knowing if and when our boy would be home we can finally start to think about preparing his nursery.  Getting him home will still be a little while off but it feels like the end is nearly in sight.

Up until now we’ve only had one photo of the four of us and today we had a photographer friend, Rachel Wilks, join us at the hospital and she’s taken some lovely pictures for us. 

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My amazing family

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