Clara has been having a 2 hour break from her TPN for just a week now. Despite this, yesterday her gastric consultant decided to up her time off her TPN to 4 hours. 4 hours!! 4 hours a day.. Of freedom!!
As Clara’s blood sugar levels had always remained stable, the team said I didn’t need to bring her back after two hours for a blood sugar test. We were just going to test the full four hours.
So off we set with our matching bobble hats on an adventure to meet a friend for lunch and walk the streets of Headington:
It’s amazing how much you can do in four hours. We had a lovely lunch before making it back in time to go to the sensory room – not much use however to a little girl who falls asleep five minutes into the fun. Despite doubling the time her body has to work without its constant nutritional supply, her blood sugars were fine – this girl is awesome!
I then spent the afternoon reading many books, singing many songs, and talking constantly to Clara to keep her awake so she’d sleep that night. Thankfully, it worked.
This morning we had a follow up hearing test with the audiology department. Clara passed her newborn test with flying colours just after she was born. However, babies who spent more than 48 hours on SCBU (special care babies unit) are at increased risk of hearing loss. Clara spent around 5 weeks there in total so her hearing needed testing again.
Two weeks ago she had her follow up appointment with audiology, but her pump machine (and others around) were causing too much interference so there was no clear reading. They decided to book another follow up appointment with more technical equipment that might be able to bypass the machines.
A week ago that appointment had to be rescheduled again as Clara had her last minute operation to put her Hickman Line in.
Today, she had her latest audiology appointment. I spent the morning keeping Clara entertained constantly so she’d sleep during her two hour hearing test. Whilst she did sleep, we got about 90 minutes through before again the results were inconclusive. This test was carried out in the treatment room on the ward with just Clara’s pump next to us.
I think there might be something up with her hearing after all. Today they replicated her newborn test with a special prove which only tests the hairs on cells in a certain part of the inner ear – and those results returned okay. But the neurological connection was what couldn’t be confirmed, again, today.
We’ll try another appointment with audiology before a diagnosis is made. Next time we’ll go to Audiology during a TPN break so we have no pump stand and we can try the test again in their special sound booth.
As usual, we’ll take each step as it comes. Next step is getting Clara dressed for our valentines lunch with her daddy… We’re off out!