What a Day!!!

Well yesterday we had a rather eventful day to say the least and I wouldn't have been surprised if I had woken up grey lol.

The day started with the community nurses coming round to take Luke's monthly bloods and to do a dressing change. He was fine about them accessing his line for the blood but when it came to doing the dressing he went bananas as usual. He gets absolutely terrified everytime and puts up such a fight bless him. It is highly distressing for everyone involved but sadly it just has to be done. Anyway when they removed the old dressing the site was oozing and very sore so it was decided it would be rechecked at Alder Hey in the afternoon as we were headed there anyway. Poor Luke thought he was done with dressings for another week bless his heart.

We got to AH and Luke kicked off BIG time, he just hates the place. The problem is that he never gets long enough away from the place to get over the last visit and he tends to meltdown the minute we enter the building. It was such a warm day and sweat was literally dripping off the pair of us as he fought to break out and I fought to get him in the place :( He needed weighing but wouldn't co operate so the dietician and I just discussed where we could go next with Luke and his problems. We are going to hold out until after the colonoscopy before we make any real changes so that we can see if we get a diagnosis from that first. The general consensus, however, is that after the scope he will go onto a fat free diet alongside his TPN to see if it improves his symptoms - think i could do with that diet!

He then had to have his site looked at once more and it would seem it has overgranulated - his body is trying to heal and push out the line. So they have decided to use a different dressing yet again and see if things improve.

We both left really exhausted and Luke somewhat traumatised bless him, he slept well poor thing.