Waiting and seeing….

Waiting and seeing is a phase that was coined by one of Daniels nurses and to be honest this is what life seems to feature quite heavily for little Dan.  Firstly I’d like to apologise for the lack of updates over the last 3 weeks, this has been due to a number of things; firstly as we all know the run upto christmas is a little chaotic to say the least; secondly we have both been really exhausted as the last 6 months are now beginning to take it’s toll on both of us and when we get to bed we just want to sleep. However, that said I aim to bring y’all up to date and try to keep on top of things in the future.  In the last three weeks quite a bit as happened although very little of it is not things that Daniel hasn’t been through before, but some are a little different. Christmas was the main event that has really happened for all of us which as you  can imagine was a little complicated to say the least. 

My eldest two were with us on christmas eve which is first time in about 5 years so this was great but meant that we would have to stay at home which wasn’t too much of a problem as recently we have started to stay at home one night a week. So once Danny was settled on christmas eve we went home, then in the morning it was up so the kids could open all the presents that Santa had brought; next it was off to the hospital so that Dan could open his presents all of which he seemed quite please with although none have really been as much of a hit as the snowman featured in the picture above. Once we’d  done this it was back home to get a christmas lunch cooked and the kids all fed just in time to get Kyle & Bridie back to their mum’s (a 50 mile round trip) for 4pm. Once they were back it was back to the hospital to get a little more time with Dan.

On 29th Dec Daniel had his first ever outing, he was taken down to the playroom on the ward.  We had said to one of the nurses that was on that day that it would be half the battle if all of us could be together rather than split all the time as what would typically happen is that I would arrive with the kids.  They would see Dan for five minutes then want to go and play in the playroom which meant either Julie or I would have to be with them.  So after we said the the nurse said there was no reason why not and off she went to sort it out.  A number of hours later all the people needed were available and with 3 nurses and a doctor Daniel went on his jollies to the other end of the ward to play.  The look on his face was a classic as you could see the confusion as he looked around thinking “I don’t recognise all this”.  But he really seemed to enjoy it and I know the other kids did too as I think they saw it as something a little more normal.

Daniel himself had been really well until last Saturday at about 1pm when the surgeon came to see him because his jejunoscopy tube had started to tear at the end after being streched over the last couple of months, he went off to find a replacement tube.  He finally returned at 10:30pm after we’d spent an hour getting Danny to sleep, this was because he had been busy so he started to look around the area of his stomach where the tube was he removed the dressing.  Before we knew what was happening he began pulling the tube out which not only woke Dan up but it had him screaming (due to his trachy theres no sound just the expressions) in what was clearly a scream of pain.  He the proceeded to insert the new tube still without any pain relief whatsoever and with Daniel still screaming. He then made sure that it was working ok before he left, needless to say we were not only completely gobsmacked  by what had just happened but we were also fuming.

A couple of days later Dan didn’t seem to be himself as he had been sick a number of times and his aspirations were up quite dramatically from what they had been previously; during the day he had been given 840ml of fluid and had put out about 600ml which didn’t take into account what he had been sick nor sweating etc.  On seeing this Julie went and asked the doctors if they though he may be dehydrated and need to start and get the fluids replaced, they agreed and arranged for a drip to be set up to replace half of what was being lost.  There have been some other issues with Dan’s care that we have had to discuss with the team on PICU as we have felt that as he is the “most stable” that he is sometimes left to it.  Hopefully these issues are being dealt with and Danny will be able to get a little more attention which is ironic as he is classed as “high dependancy” but he actually needs more attention as he is consious and need stimulation which recently has tended to come from with the Play Specialist (who only works 3 days a week) or myself and Julie. The last couple of days though he has been a little better as he’s not looking so dehydrated any more and he is just so much happier in himself, he’s full of smiles for most of the time now albeit that he is really full of cold and got a real snotty nose he is still able to keep smiling…..the boys a real star!!