Friday 6th of November

James had a calm night in PICU and so did the little girl besides him :O)!! James went down a floor to ward 67 this day. It was lovely when the staff came to follow us down. Many big thanks to the wonderful staff at PICU :O)!!
James had a plush bird which u can use as a puppet on your hand as well from the ward, so it was a lovely welcome present :O)!! James was not impressed by the staff and mighty stressed everytime he had medicine in his venflone (PVK) in his hand, poor little man. The heavy antibiotics he had iritated his blodvessels and it hurt going in, it probably felt cold in his arm when they gave it to him as well.Bless him, he cried everytime he realised the staff would give him medicine in his needle. The staff had made sure he had a playmat in the room and lots of fun toys.
James did not sleep well during the night, he was crying everytime they gave him medicine in his hand. Thank fully he started eating a bit on his own, but he was connected up to the drip feed as well.
I thought I would feel happier going down to the ward, it meant victory, improvement and developement. I should have thought how lucky I was as I usually do, but I came into a dark little tunnel, thinking what is exactly "over" :O)?

Thursday-5th of November

They called me this morning, I was just up. James was awake and been entertaining the staff :O)!! Tjohhooo I half ran to PICU after calling Nigel. It was lovely to see James´s beautiful eyes :O)! James had a lot of pain on and off :O)! The staff needed to change his bedding and James came up in my lap for a bit. Poor little man had a lot of pain so they needed to flush some Ketogan, morphine. James fell asleep in my lap, it was lovely to feel him close and kiss him :O)!! Nigel came over in a hurry when he heard Jams was awake :O). I gave them two some space I knew poor Nigel could not stay for so long :O). The staff rolled in a flatscrenn tv with a dvd for James now when he was awake. Bob the builder went warm all day :O)! James was still heavily drugged for the pain and it was good that he could concentrate on something and relax :O)!

Nigel went home again, I talked a bit more with the other parents. Later this evening the little girl had a lot of flam and she was hungry and started screaming. I had my back to them but I heard the mother tried to breastfed her to comfort her. Little Miranda was more and more upset and suddenly the room was filled of quiet. She stopped breathing and the staff pushed the alarm. Of course all the staff rushed over to the girl’s bed to ventilate her. Her mother went calmly (they had experienced it before) outside, I felt stressed I so wanted to go out to her and give her a hug but I decided to stay with James so staff could concentrate completely on the girl and I sent my thought and love to the mother. I was not stressed about the girl; more about the mother, poor little sweetheart was in the right place at that time, the reason why the children are there after a major operation, but nevertheless a worrying time for the parents!!! The girl started breathing quickly again after some adrenaline and with lovely Ruben for ventilation :O), bless her!!The father stayed in the room. When the mother came in again she looked at me and we both put our hands on our hearts when she passed by, a mother to a mother meeting, when something happens to another heart child it is very close to heart!!!

I thought about the incident going back to the room in the evening. How much I have gone through and experienced since James was born. I have always been calm during emergencies with adults, I have been around before, but only the thought of a child stopped breathing or being ill in the past I panicked inside (naturally nothing I take lighten of course anyways. Sometimes I don’t know if people find it a gift I have received, a sickness or just madness during everything I have gone through with James ;O). Being at home with him and he stopped breathing and I calmly pushed him to start breathing again etc. Sometimes I don’t know if I should laugh or cry, but I´ll choose laughing and see it as a gift, a gift of being strong and secure in a emergency and not” lose my head” and freak out I have to see as an asset, I am certain it has helped me mentally or I would have gone under. I think everything in my life with many children and a husband that works a lot I have not really had the time to collapse completely during a longer time.



I called Nigel and talked off the incident and gave him update about James, he was fine and a sleep :O)!

Wednesday-4th of November

The staff called me this morning, I was just up. James was awake and been entertaining the staff :O)!! Tjohhooo I half ran to PICU after calling Nigel. It was lovely to see James´s beautiful eyes :O)! James had a lot of pain on and off :O(! The staff needed to change his bedding and James came up in my lap for a bit. Poor little man had a lot of pain so they needed to flush some Ketogan, morphine. James fell asleep in my lap, it was lovely to feel him close and kiss him :O)!! Nigel came over in a hurry when he heard Jams was awake :O). I gave them two some space I knew poor Nigel could not stay for so long :O). The staff rolled in a flatscreen tv with a dvd for James now when he was awake. Bob the builder went warm all day :O)! James was still heavily drugged for the pain and it was good that he could concentrate on something and relax :O)!



Nigel went home again, I talked a bit more with the other parents. Later this evening the little girl had a lot of flam and she was hungry and started screaming. I had my back to them but I heard the mother tried to breastfed her to comfort her. Little Mirella was more and more upset and suddenly the room was filled of quiet. She stopped breathing and the staff pushed the alarm. Of course all the staff rushed over to the girl’s bed to ventilate her. Her mother went calmly (they had experienced it before) outside, I felt stressed I so wanted to go out to her and give her a hug but I decided to stay with James so staff could concentrate completely on the girl and I sent my thought and love to the mother. I was not stressed about the girl; more about the mother, poor little sweetheart was in the right place at that time, the reason why the children are there after a major operation, but nevertheless a worrying time for the parents!!! The girl started breathing quickly again after some adrenaline and with lovely Ruben for ventilation :O), bless her!!The father stayed in the room. When the mother came in again she looked at me and we both put our hands on our hearts when she passed by, a mother to a mother meeting, when something happens to another heart child it is very close to heart!!!

I thought about the incident going back to the room in the evening. How much I have gone through and experienced since James was born. I have always been calm during emergencies with adults, I have been around before, but only the thought of a child stopped breathing or being ill in the past I panicked inside (naturally nothing I take lighten of course anyways. Sometimes I don’t know if people find it a gift I have received, a sickness or just madness during everything I have gone through with James ;O). Being at home with him and he stopped breathing and I calmly pushed him to start breathing again etc. Sometimes I don’t know if I should laugh or cry, but I´ll choose laughing and see it as a gift, a gift of being strong and secure in a emergency and not” lose my head” and freak out I have to see as an asset, I am certain it has helped me mentally or I would have gone under. I think everything in my life with many children and a husband that works a lot I have not really had the time to collapse completely during a longer time.


I called Nigel and talked off the incident and gave him update about James, he was fine and a sleep :O)!

Tuesday-3rd of November-PICU

I had my alarm set on 5.30 I wanted to be at PICU early if James woke up. Just before the alarm went off the phone rang, it was the staff. James had been worried during the night but not awake enough to call out after me so they did not call me. He had a lot if flam and pain and it made it difficult for him to breathe since they had give him more sedatives which knocked out his breathing. Even if I knew it was a “small, common” setback it made me stressed since I would have preferred to be with him when he was under stress and intubated. But I had not made that point to the staff and I think most parents do not want to be in the room under those procedures and he would not have known if I was there. I was quickly ready and made my way to PICU in the culverts. I thought about why they put him back in the respirator and it sounded it was for humane reasons not that he could not breathe at all by himself.

James was at rest in the respirator. I went out to Nigel a call so he knew about the slight step back. They would bring him out from the respirator in the evening again. Later that morning Chief Surgeon Sune came in to check on his patient. I could tell he was not impressed. He came in and asked the nurse why James was in a respirator she just answered it was decided during the night and previous shift. Sun shook his head and walked out.


I thought to myself (with my sense of humour ;O)” I wish I was a fly on the wall during that medicine round, hahahhaa ;O). If anything has helped me in my life, situations and stress, it is my blunt, silly, somewhat sick ( might be to others ;O) sense of humour, I have found that humour can be used in most difficult situations (of course there are grave no nos) but the situations we have found ourselves in, a quick line here and there can make the atmosphere easier and relaxes everyone, the staff that knows me (I hope) knows I appreciate a good laugh and a giggle and they do not have to carful what they say etc. That is how it is, what we survive we become stronger! And it can always be worse, there are always other that have it worse than I have it, that what I have been trying to think of often to not let my self-pity take over, even if we all ones and a while needs to and have the right to feel sorry for ourselves and have a good cry :O)!


Dr Thomas Higgins and Nurse Annika Maxedious (whom I now call “Laserwoman” ;O) came to make their research tests with ultrasound (scan), blood tests and Annika did her laser-test on James´s arm which measures the capillary flow ( yes do not ask me .O!).






I went down to have breakfast in the hotel. It was a calm day, James was asleep and had help with his breathing, so not much I could do really. I talked to the staff and read. Typically me, I read a true story novel. It was a horrible true story where a English couple had four children, three boys and a girl. The oldest, the girl survived, the baby boys died of sudden death, the girl also stopped breathing but she was saved. Not only that it only happened when the husband was away from home so the mother was accused of killing her babies of, but it was not true, she was isolated from her family, and thrown in jail:O(!!!!! A very good way to keep focus of my self-pity and to start thinking of those who has gone through worse! It was a “happy ending” though :O). Anyways, the embarrassing thing was the cover of the book, (thinking of sitting in PICU), it was a picture of her children’s tombstone on the cover. Everyone asked of course, “which book are you reading”?, and I had to show the cover. Hhehehehehe I could might as well put donkey on my forehead ;O).


Nigel came over for a little while, I told him to stay at home and work since it was not much he could do either. It was very nice when he came though, we went out to the kitchen because he brought some lunch for us, bless him :O)!


James blood-pressure went up and down during the way, they tried to get a balance with the medicines and fluid so it would stabilise. It was nothing uncommon though, we had known about this before.


James was extubated again during the afternoon and it all went well :O)! He needed to sleep though to stay as calm as possible.


James had a new little “girlfriend” in the room called Mirella. Her parents were lovely, we had small talks :O). I had a fairly early evening, since James was asleep anyways.

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.

Sunday- 1st of November

Finally it was time :O)!Nigel followed us to the hotel, with James, camera bag and all the other packing I needed help. James was already finished for bed. James was all exited he had his own bed to jump around in. James was up way later than I expected even if he did not have a nap after “lunch”. Too exiting to sleep in a hotel, like a slumber-party forJames ;O). James was allowed to have Infantrini (milk/formula with extra calories) until 2.00 am ant then water until 6.00am.