Got back home friday evening, at long last!
Brett is doing really well following his ASD repair and PDA Ligation, a little bit unsettled at the moment but he's been through an awful lot and it's still early days. He's beginning to smile a little bit again but is still wary of the world and what it's going to do to him next. Everytime a stranger has approached him in the last 2 weeks all they've wanted is blood and he says he's not giving any more!! lol
Well, he gave us a few frights. He took a little bit longer in ITU than most babies, because of his narrow floppy airways, but with a bit of extra help and time (a couple of days of steroids) he was able to come off the breathing machine and breathe for himself.
Then after a few days he did his usual trick of getting the nurses and doctors all worried by spiking a temp that was unexplained by any of their tests (blood, urine, xray, scans, etc etc) It got so bad that he had a couple of febrile fits and then when they gave him diazapam he gave them a fright by refusing to breath properly so they then had to give him some adrenaline and steroids to help him. Our Brett does like to keep everyone on their toes!!
To cut a long story short, they referred Brett to the Paeds about the temps, and following some tests (EEG and MRI) it seems that the movements he sometimes does that were first thought to be possible Infantile spasms are not, but they may or may not be some sort of seizures and will be monitored in the future. The facial Palsy he has, and the left sided weakness is from a stroke he has had in the past, possibly around the time of birth. The temperature instability is probably a result of the impact on the brain from the stroke and may improve in time they think.
All in all it was the most stressful time we have ever had, and I can't even describe how it felt to have to leave him in theatre and walk away.
Heres some pictures of our very brave little boy, we're so very very proud of him............
