Paige was discharged yesterday afternoon at 2.00pm and we had a pleasant uneventful afternoon and night yesterday.
Have I mentioned that she has absolutely found her voice? ordering me around all day long. She's also a full member of the Sam fan club and idolizes everything that he does, which is good and bad, but hey if she says "yes please" and "no thank you" who am I to complain.
We spent a lovely day at home and she's still inching up on the scales at 10.3kgs hooray!
Anyway for the first time tonight we left both kids in bed awake and went down to the kitchen to have dinner together, at about 8.15pm both Sam and Paige started crying. Sam apparently tried to move the feeding tube from Paige's face and pulled it right out!!! of course this required a call to CAU and they suggested that we come down to QA to have it replaced because the community nursing team were quite busy tonight. Mel who answered the phone said they weren't very busy so we could be in and out quite quickly. What I didn't understand fully is that they were going to use a temporary tube which needed to be replaced in a week because all their other tubes had been recalled and not yet replaced! Of course Paige was completely distraught after the process, so much so that when I asked her if she wanted a cuddle she said "no, don't touch me" and pointed to her tube and said "don't like this one". She also warned Sam not to touch her either! So I'm no longer going to ask what else can this poor child endure because something else always happens. Tomorrow is a new day and I will begin the hunt for a new feeding tube.
There is absolutely NO WAY that I am going to allow the hospital to put a new temporary tube every week that is simply inhumane. I don't know why but I am still amazed that the hospital can be so disorganized and un-caring for their patients. I appreciate the need to return faulty feeding tubes, but why can't they get immediate replacements or at least source some from another hospital or community nursing team??? After all feeding tubes must be given to kids who are really well and need additional pain and suffering, right?
Finding it really hard to be positive tonight............