Sheena and Roy - 2 weeks in.

I have been spending pretty much all of my time in hospital with Roy for the past 9 days. The day goes really fast with all the other stuff that goes on, so anyone that has phoned or emailed, I apologise if I am really slack at getting back for now. Phones aren't allowed on the ward which makes it difficult.

Sheena Update:

Yesterday I had my first visit home for about 8 hours, and had a proper play with Sheena. Of course I've seen her here and there, but its usually only been a brief hour while hubby comes to visit, and it just awkward entertaining a 2 year old in hospital. We're never taken her up to the cardiac ward as we don't think its the place for her, but there is a play room and outdoor playground to keep her entertained.

So our afternoon and dinner was great fun with Sheena. Sheena was in great form, and her "conversations" are getting much better. She will now go, "blah, blahh, day, da, ba, ma nann nann" as though she's trying to tell me something very important but can't find the words to make any sense of it. Thank goodness for sign language to fill in the gaps. There is a lot more inflection in her voice making it quite different to normal babbling. Very sweet. She is also getting much stronger - particularly her legs. Everyone that sees her regularly has noticed the change in that.

She is handling being with her dad 80% of the time, and with her Nan and Pop the remaining time very well. She's used to spending most of the time with me, but the fact that she's coping so well makes it easier on everyone. She is off her food much more than usual, but I am told by my girlfriends that this is not unusual for a 2 year old anyone.

Roy Update:

Roy is nice and stable, and his work of breath is more under control now. He still is working more than he should, but its much improved. He still gets poked daily for bloods, but is down to just an nasal gastric tube, and is now fully dressed, and much easier to cuddle than when he was in the heated cot while they watched his chest, and had an ecg going all the time. We've been moved from the high dependency room to the regular room on the ward, so its a bit quieter, with less beeps going off all day and night.

His diet is closely monitored, and he alternates BF's and NG gravity feeds. Each BF involves a weigh in before hand, and then after, so that they can calculate exactly how much he is taking in, and if isn't exactly 100mls, they top him up with some EBM so they can ensure he's getting the planned amount set out by the dietitian. It is all rather medicalised, but its important, as they need to track if he's gaining calories or if is fluid retention which the diuretics should be controlling anyway.

The plan for Roy at this point is to have surgery next week. We don't know when but the surgeons meet on Monday to schedule the week based on each child's case. Roy is a priority case given his age, and that he's still in hospital. His obs are stable, however, so even if we're told its Wed for example, it could easily be put off if a more urgent case comes up in the meantime.

Thanks everyone for your interest and best wishes.