Thank you Sue and thank you Helen. I did take a deep breath before I walked in the door the first time I saw Harald and it wasnt half as bad as I had anticipated. As you said Sue, it wasnt pretty but wasnt Frankenstein either. Im so grateful for your support. Helen - Wow - so you were a patient yourself? and in LRI? How are things now for you? I must admit the Kinmonth Unit at LRI is spotlessly clean and the staff are wonderful. Do tell me more if you are able, about your own experience. The following is my little Blog that I wrote immediately post op Day 2 and Day 5 -
DAY 1 POST OP
When I walked in Harald's room the first time after the operation, I had so many butterflies inside me, not knowing what to the expect, but although he has had such major surgery, he looks fantastically well. I think even the docs are surprised. Facially he is very swollen - he has had half his jaw removed, about 6 teeth, a bit of pallete and a small piece of tongue from the back, and all the lymph nodes from the neck. I tried to count the staples he has from ear to ear and under the neck and I guess there are between about 35-50 (couldnt see the ones underneath but did count up to 32 (16 from each side). He has his tracheostomy which already he has been encouraged to cough through and get up all the poison on the fags over the years and he seemed to do that quite well. I dont know what I expected to see - but it was a hell of a lot better than I thought it would be, and apart from all the staples which will fade into a neck crease scar, there are no visible signs on the outside of his face that he has a graft of skin and muscle in there STILL attached with the blood supply from the chest wall, so its all been tunnelled up from inside of his chest and floor of mouth to the inside of his face. Incredible to say the least. He has his PEG feeding tube in place that looks very easy to use and thats full of nutrition and he's on a morphine pump as well as having liquid painkillers and antibiotics in the back of his hand via injection. He has 4 draining bags from various places and a big pad over his right chest where the muscle was taken etc. Bless him - we had lots of funny conversations with him using the white board - he still has his sense of humour and can smile a little but his lips are numb, maybe he has a local pain block in his face too, I dont know. Going later today to see him and take all the emails his friends in Germany have sent. I can email them now using an online translating programme which is great. and then -
DAY 5 POST OP
Harald is up and about with just one chest drain in and the PEG feeding tube (plus all the neck staples). He is doing really well and the doctors have said that they are amazed at his progress and has had the best results so for, from an operation such as his. I know its early days so am not counting our chickens before the are hatched etc. I can only think about one day at a time. (Im still on sedatives but they are helping).
I think he gets very frustrated with not being able to speak at the moment but we are managing the best we can with a white board and pen. I think the Morphine (now being administered through the PEG is accumulatively kicking in plus lack of sleep as he was very grouchy today - nothing I could do today was right) He has been moved to a different hospital room and it overlooks a very large chimney in the city of Leicester (part of the old hospital actually) and Harald was convinced that it belongs to the crematorium, and he is convinced that he is getting closer to it, and the next conversation about the chimney is that it must be part of the gas chambers of the Belsen concentration camp........ so I think this is the Morphine speaking...........
I will check in with further progress but thank you to Liz, Sue and Helen.
Love to you all,
Judith xxx
