Monday-2rd of November-OP day :O)!

James & I walked down in the culverts to ward 67, we arrived at 6.00. I had the gear so I gave James his sterile bath myself. Clean clothes, “lovebly” hospital clothes ;O). Then the nurse helped me with the Emla cream (painkiller) on James’s hands and feet for all the needles they would need. James sat happily and (probably a bit confused) in the pushchair watched some dvds. At 7.50am the staff arrived with the sedatives, I was disappointed and felt stressed that Nigel had not been able to arrive before then. But I knew how hard it was for parking and all the kids need to be dropped off at school etc,and most of all I knew how disappointed Nigel would be if he missed going with us. We were supposed to be at OP a level up at 8.15, when the time was 8.10 the staffs was ready to take us up with the oxygen atc. I grunted to the staff jokingly that if Nigel did not show up in time for OP I would order moving cards ;O), hahaha. I looked out in the corridor and there Nigel came in a rush, phew! Some stones lifted off my shoulders. James was high on mighty by this moment in time, singing and entertaining and laughing in a drunk way ;O). When we took the elevator James was in the pram and two of the lovely staff followed us up in elevator, James still entertained us with his singing, I said we should have taught him, “what shall we do with the drunken sailor “;O). Finally we arrived; it felt really good I was not nervous anymore. Ann-Christin the anaesthetic nurse who assisted op nr 2 with James was there and other known faces outside the OP room waiting, I jumped into the “Mars suit”. Nigel snapped off some photos, he gave James a kiss, then James, a nurse from ward 67 and I followed the team to the pre room next to the theatre. James giggled, I put him down on the stretcher ,it was very warm and cosy, he had a toy, and they started to put in some needles in his hands. A nurse stood by James´s head. James kept on stretching back like an arrow to see the nurse’s face and said “HEEEEEEELOOOOOOO”. Hahahaha, we had lots of fun actually, it was like a comedy!!!! Yes, he had the hiccups as well giggling away. It took longer than expected I was probably in there for 15 minutes until Dr Valeria showed up, then James was quickly sedated and the nurse by James´s head took over his breathing. Before James fell asleep I told him, “Mummy Daddy loves you and we will be at your side when you wake up again, sleep well Darling” “you snuggle Buggle”(one of my mad expressions ),O). I walked back with the nurse to the ward were Nigel sat just by the door looking like he sat on needles, poor Nigel, at that time I was calm and had it “fun” with James before he was sedated, I told Nigel how James was before he was sedated and he cheered up :O).


We walked out to the hotel room and I gave Timothy a call, he was ill and was home alone, which worried me, since we did not know if he would stat having a fever.. Usually he is alright being home by himself. But this time he was not, he had caught a high fever, he was worried sick he had heard noises and been scared. Poor Timothy :O(!! Nigel and I discussed how we handled it best; I called back and said I was on my way to pick him up immediately. Timothy and Elliott were the only ones at home. Colin and Neville were at their fathers (because of the OP) since they were ill as well. We decided to call Elliott home from school, he had to take the day off. I called school and probably scared the living life of the teacher who answered, I felt stressed about Timothy and James. I drove home, it felt weird to leave the hospital knowing James was in theatre I looked at the time, 9.30, Sune had started his “plumbing” on our boy. When I came home I packed DVDs and things for the boys to play with in the hotel, they we because of the Pig flu not allowed in the hospital, only parents. Elliott came home, we were off. We went to the hotel room were Nigel tried to work to distract himself. Timothy´s fever had shot to sky high. Poor Timothy, he was so worried about James, it is not easy for the siblings either :O(! The boys looked on a DVD and put some of Elliott’s LEGO together. The boys and I went to the hotel restaurant for lunch, I knew it would be a looong day for all of us. Nigel did not have lunch with us, we all cope with stress and grief in different ways (Nigel already had a lot of pressure/stress on him from work before the OP) and this time Nigel could not cope so the boys and I had some time on our own. We all met up in the hotel room later and waited for the call. Sune had said he thought he would be finished at 13.00 pm at 2.00 pm he had a meeting. 13.00 past, then I started to count the minutes, thinking ok either a lot of scar tissue for them to go through which I had heard was common or something else, the something else concerned me :O(!!!!! At 13.40 Sune finally called, bless him :O)!!!All was fine, difficult scar tissue, phew, but when he reached the heart it was like on rails! James had very good pressure in his chamber. Thank God for that :O)!!!! Sune said his college now would close James´s chest and sew him up , Sune now had a meeting to go to. We all had hugs and kiss party. We had to wait 1,5 hour until we could go and see James; Before the surgeon was finished, James was at PICU (BIVA) settled in with respirator, all the medicine pumps connected with the “spaghetti” tubes going to right left and centre and they had him as balanced as possible, it takes some time.


A little sticker note ;O);BIVA in Lund is very international I must say ;O). James had a nurse who lived on Ireland for 20 year (Mary), another nurse who I heard had a slight Am accent(Susan) turns out she was an American living in Sweden for 29 years and a assistant nurse whose Mother was English.

We served the boys with movies they were a 4 min quick walk away and we could easily call them every hour and we did. James was beautiful despite all he had been going though :O)! Pink lips, PINK FEET (Now I can’t call him “Bluefoot” anymore, from “Stinkyfeet”, to “Bluefoot” and now “Pinkfoot” ;O), haahhaahhaaha ;O). We were ecstatic to see him!!! The staffs was working franticly, excusing themselves for doing their job. In the beginning there are a lot of adjustments, medically. Blood pressures going up and down, James waking too much and needed flushes of Propofol to sleep heavier not to fight the respirator too much etc. X-ray showed up to check James´s three drain tubes coming out from his lungsacks and heartsack.


Nigel had to go back home later in the afternoon, the boys and he needed tea and Timothy was not well at all. We called back to the hotel room often from PICU (BIVA). Nigel and I kissed goodbye.


After some time after Nigel had left they decided James could be taken out of the ventilator. James had been on an empty tummy since the OP because of the possibility of extubation. I have lost his name for the moment, but the anaesthetic Doctor came in when it was time. A very nice guy James had him in the past. One of the nurses asked if I would not be uncomfortable to see James being extubated (since I stayed by his bed as usual), before I was able to answer the doctor smiled looking at me “not her she is a veteran by now, there has been a bumpy road with James”, hahahahahaaha ;O). Anyways, he pulled out the tube and as always it was difficult for James to begin breathing with flam in the way of breathing correctly, some inhalations, oxygen in place. I was happy I could be there to calm James with my voice and pep him a bit to fight though, but ouch can it be something more uncomfortable to be intubated or extubated :O(??!! Poor James, but a necessary evil. They put a nose thingy with oxygen up his nose, I said it will not work never has been. James had less Propofol now and was more awake so he could breathe on his own. He was very worried since he did not want to have this thing up his nose. They started using a normal oxygen cone but his saturation dropped too much, they wanted it over 93%. The brought the Penguin-mask of course, James´s old “friend”. It work, he did not lik it but much better than the other one :O)!.


I asked the nurse about James throat, it looked like he had a swollen collar around his throat. The staff said it looked odd (which made me slightly nervous since these people had seen most things ;O). They put it on record to keep an eye on it.


New thing to this operation was a painkiller balloon with a catheter going up to James wound in the chest. This balloon had a special pressure giving James local painkiller in the wound; they had seen it had lowered the heavy drugs. In James´s case it did not seem to make any difference, they had to flush Ketogan (morfin) often to calm him. He many time took his hand on his chest saying (ooooooh), bless our wee boy :O(. Anyway they flushed when he neded extra. James was calm at 22.30, I was dead beat tired, it had been a loooooooong day! I said to the staff to please call me if there was anything with James. I kissed him “night ,night” and to have it “snuggly buggly” ;O),”Mummy & Daddy loves you” as usual.