Red tape

Dan has continued to do really well since friday, throughout saturday he continued to only be in “air” and generally being really chilled out and having fun when he’s been on his play mat.  It has been really great to see him doing so well after being so poorly the week before, Tom spent some time with Dan on Saturday and while he got bored quickly, standard 3yr old, he did help him to play with his toys and at one point fetched a tv & video for him to watch Monsters Inc on.  Amazing really that Dan being 6 months old no has only watched Tv 3 times now!  The one shock of the day was when we first got down to Dan in the morning and found the nurses doing another trachy tube change, which had only been done 2 days before.  It turned out that when they took it out it was blocked off with secretions, this was probably caused by him being on his “dry” circuit when he’s out playing.  On Saturday evening he started to need some oxygen again after he’d fallen to sleep, staring at .3ltr and rising in the end to 1ltr.  We spoke with one of the doctors about it and she said that it was not concerning at this time as he had suddenly moved into “air” and really unless he started to need it during the day as well then.  As it turned out on Sunday he was back in air again and out playing on his mat in the day.  One thing that is becoming more apparent is that difficuly that we are having keepuing Tomas entertained when we are there with Danny for the day, while it’s not ideal Tom being there it is important to try and get some time with him and for him to get time with Danny.  Also with some of the patients on the ward being quite poorly we have been asked as well to try and keep the noise down which as anyone would no it’s no small task with a 3yr old in tow.  So I asked Dan’s lead nurse if we could arrange for Dan to go down the playroom again so that he and Tom can be down there, out of the way obviously still with a nurse, so that Tom can play without disturbing anyone.  I was told that because of the investigation, which could take weeks maybe months,  that is being conducted into Dan’s jejunostomy tube that going away from his bedspace has been put on hold. I explained why we wanted to get him down there and the problems that the current situation caused but this was to no avail as the orders come from above.  I told Julie of this when she came back with Tom and she was absolutely fuming as once again we were being told what we can and can’t do with our child and that after waiting almost 7 months to be able to do something normal with him we were being told once again sorry we can’t let you do that, only this time not for medical reasons. I mean we just want to do something normal with our baby, his pushchair from occupational therapy is due to arrive today so we were hoping to work towards taking him for a walk for the first time EVER but now we are told no.  Needless to say Jules is on the war path and plans to speak to the powers that be when they return later in the week.