After a week of good progress we’ve had yet another set back, this boy knows how to keep us on our toes!
On Tuesday Oliver’s scalp cannula was removed, his feeds increased to 4ml 2 hourly and his urso (medicine for his jaundice restarted) and he was alert, happy and all looked good!
Oliver enjoying a nice cuddle with Daddy
On Wednesday we noticed a strange rash on Oliver’s left leg so vitamin K was started, thankfully this hasn’t spread or got any worse. He was due an eye check up this week but it was decided to postpone this until he’s better. We had signs Oliver wasn’t himself on Thursday and Friday as he’d been unsettled for the nurses and very sleepy when we visited. The decision was made yesterday to move Oliver back to Ward 12 for closer observation over the weekend and another antibiotic has been restarted. Whilst all of Oliver’s observations have been good his haemoglobin levels were a little low so he’s now had his tenth blood transfusion!
Oliver has been visited by the physios this week who have been great at suggesting exercises to strengthen his neck and encourage him to face the other way as he tends to favour facing to the left and is getting a wonky head!
We also met another member of the surgical team yesterday and they will be doing a barium study on Oliver, once he is well enough, to see the progress of his gut. We were given another reality check when he explained that even when the stoma reversal takes place there is no guarantee it will be a success and another stoma may be needed.
At the moment it feels we will never see the day we get to bring our boy home but we’re trying our best to stay upbeat!
On a more positive note we had a meeting with Action Medical Research this week who are funding a study into the causes of NEC at the moment and I will soon be sharing our story with them. Oliver took part in the Dove Study
before he developed NEC and hopefully his results might give some clues to why this terrible disease occurs.
One gorgeous sleepy boy having some tummy time.
Until next time, keep sharing and following on Twitter @franhjones!