So, this morning I had Sam strapped in the car by 7.30 and off to Starship for our first appointment at 8.30. The surgical reg took out Sam's bladder catheter and was happy with the way it looked and we are back to 4 hourly catheterising it.
9.30 saw us in gastroenterology clinic, where he weighed in at 15.5 kg and 95 cm tall. He was happy and chatting away, and his tummy definitely softer and much better than previous clinics. I was happy to tell them that over the past week Sams night waking and vomits had reduced significantly! It isn't clear if this is due to his kidneys/bladder getting relief due to better drainage, therefore less toxins in his body, or if the pressure of the bladder was causing it. Either way, we're just really pleased for Sam (ok... and us! - sleep is a beautiful thing!). It was decided then to continue with increasing the concentration of the milk formula that I make up for him, so he is getting more calories/vitamins/minerals and hopefully can reduce TPN yet again. All in all everyone happy!
10.30 saw us in the cardiac ward, where he was fitted with a holster monitor. So he has 5 big sticky probes on his torso, which he really wasn't so happy about! The probes are attached to long leads and then the monitor that is attached to him somehow. He needs it on for 48 hours to monitor his heart, then the heart team will know more. Sam was pushing away the ladies hand and screaming (very natural!) and I was trying to distract him various ploys - one was pretending the leads were spaghetti.... he piped up, 'But I don't like spaghetti on me!'.
He settled down once it was on and he has coped fine with it and is happily running around.
Thursday he has ENT follow clinic post tonsils, so it will be interesting to hear back from them as an oximeter overnight recording was done last week whilst he was in hospital and we haven't heard what that showed up. The one prior to his tonsils and adenoids coming out showed he had long periods of less than 65% oxygen - eek!
So it's been a busy day, but he is really happy - more happy than normal, as I think he must just feel a whole lot better with his drainage sorted. I'm thinking Kindergarten could be a bit too much for him tomorrow with little fingers wanting to check out his leads, so he can have a quiet day at home, watching Mum wash the very dirty windows!
I shall endeavour to leave you with a photo of Robo Sam!