James is worth more than his weight in gold :o) !!!!!!

KING SUNE- Nr 1 card. Surgeon

Day before the op - 25th of March

I was nervous. Not because of the operation, I was nervous the operation would be canceled yet again! I have accepted everything with James condition. I have had very brief thoughts like a child “I don’t want to”!! Thinking of stomping my foot. I have all my faith to Chief Surgeon Sune Johansson and Surgeon Torsten Malm whom were James surgeons, Anesthetic Doctor Ann-Christin Olsson, Anesthetic Nurse Chatarina (Kattis) and with the rest of the brilliant staffs of operation nurses etc, which I unfortunately don’t know the name of at this moment in time.
James would not survive without another operation more than a couple of months starting with too low oxygen which would give him brain damage at first and slowly die. Harsh but facts, this is why I could not feel sad about the operation more sad if it would be off again. Of course there is always a but, what if? Etc. It is an open sternum heart operation, which there always a risk behind it.
I have my sick jokes and I am happy the staff can be relaxed around me and joke as well. They should know by now I appreciate it. I met a bunch of staff in the corridor including sweet cool Elisabeth. She had joked earlier if James had start to have a high temperature put him on ice. Hahahaha!!!! Of course I put it further, ice, cold packs and when he is cold and blue when Sune will operate him I just tell him it is because he is so badly saturated he has turned cold and blue so he better operate him fastly! Hahahhaha!! We had a good laugh about it. When I mentioned it to the doctors later they looked like they did not dare to laugh. I bet they are not used to Mums being able to distance themselves and them and to joke about their worries. My way to handle things, to joke, have fun and not dig myself down which is to no advantage for anyone. Of course, if we had had sad new about James negative news I would be in a total state of mind!!!! I had a conversation with a dear friend of mine who has had a total different, very sad and worrying news about her son. If I had been in her shoes I would not be able to joke and have a smile on my face !! We are extremely lucky and there is a plan for James heart condition and everything except for infection has been planned and no heartbreaking news our way. We are very grateful! Don´t take me wrong, I have a bright side, a humor side and of course a very serious side. When I write maybe in sounds like I am only goofing around, of course not :O)!! I adapt to situations. I am pretty outgoing and loud sometimes, so to work in a funeral home as I have thought of before would not work at all, they don’t need someone happy and cherry with a smile from each ear in the reception greeting with HELLO!! No not suitable at all and I would be bored stiff as their clients ;O). Sorry could not help myself :O)!!
James is always very close to a smile and a giggle. We/I have done everything in my power to make James experiences as positive as possible. When I have put down a feeding tube we have had our mad moments and giggles together, I have tried to make it a bit fun not been looking sad on him and made his worries worse to begin with. If I look sad and saying poor you all the time he will be scared to death when he goes in for operation the third time or even mentioning all the checkups and blood tests!! The only way for it to work is that I am not anxious during all of this myself, if I was I think it would be better if someone else took over if it was so bad that James would notice my insecurity. Mummy is worried blimey this must be very dangerous!! Well simple psychology of course :O).
It was very reassuring when Sune came in to inform us about the operation. I call him King Sune!! He and Torsten who operated on James are the BEST of the BEST!! I have heard LUND cardiology unit is classed as number 4-5 in the world!! That is BIG! No wonder we feel as safe as we possibly can.
Sune is a short man with dark hair and is of course very passionate about his work and has both feet on the ground. I admire him very much, we do actually ;O). It was nice to be informed and blimey he makes it sound simple hahahahha! We just rip that off, cut this in half and attach it to this. OK hahaha. Sounded like an kinderegg instruction but is a high class surgery performance. We are lucky there is men/women as professional, skilled and intelligent as Sune. This was the lightest operation for James. Not even close to the danger with the first one. Less than 1% risk for him to die. As little as it can be, a surgeon never says 0%. Sune showed he has two feet on the ground and made us giggle. He had the plastic model heart in his lap and showed us what he would do. He was about to put back the Pulmonary artery back and he could not manage, he said “blimey I don’t know how it is so supposed to be fitted” HAHAAHAHAHHA! We talked a bit more we thanked for the information and we said our goodbyes and he went out the door. A few seconds later we heard a knock on the door and Sune was quickly back in with a smile and he said “ I forgot a piece of the heart here (on the scale), hahahahah I said jokingly "please have a good night sleep tonight Sune" and he went out the door". Nice to meet a worlds best professonal surgeon with self distance :o). Sune has a very calming effect on me, I know if anything would happen James is in the very best of hands and everything has possibly been done for him!! Only that is a HUGE comfort to me!! Even if it wont be a comfort if anything bad happened, thankfully I have no idea how it would feel. I take for granted it will go well for James and I push away the fare of James life being at stake. Frankly it would be more on the stake if he did not go under surgery and that scares the living life out of me. It was not many years ago when James deffinately would not had made it. There are babies today that dont make it whom are diagnosed with HLHS. Unfortuanely not all babies can be saved. There are worse heartconditions than James as well of course, sadly.

Some of the Stars- Jenny Åsa Annie Birgitta Elisabeth och Anneli

Going Home before operation?

The doctors discussed early on the possibility of going home before the operation. We were not keen on that idea, only the thought of the episodes of him loosing colour suddenly on and off in periods at home before, gave me nervous ticks ;o). We thought it was time to draw the line, put our heels down, be stubborn as mules, be a pain in the neck- the bum and everywhere else :o). I empathised to the doctors I would not take James home, without them dragging me out from the hospital. I said Kindly grinding my teeth. No way José! Only the thought of James having another infection in between the op again scared me. His shunt now had stenos is and James would not grow smaller. Time was against him. The doctors agreed with us and we were told by different variations of staff that we had been more than patient (there is several times we could have rushed to the hospital with or without ambulance if we had not kept our head cool) because when James looses colour even for a couple of minutes is not a pretty sight. When something has happened to James I have just called the ward or Elisabeth to check instead of rushing off.. They even said they saw us as one of the “easy families” positive supportive parents. It was really nice to hear of course :O)
After a couple of days a decision of James staying until after the operation was made. I think we have all working groups to thank for that as well. It was a major relief for me/us and I could relax, the nurses were happy as well :o) Very nice to have their support!!!!!!!!


Oxygen support

James had oxygen support right until the operation. He had to begin with, t 7-10 L oxygen and when the operation was on he needed 2,5-3L. We tried to lower it a couple of times with the aim to take him off it. One doctor was very optimistic and wanted to lower the oxygen completely while another doctor did not have it as an immediate goal before the operation. Everything the doctor decides is correct just they have thankfully personalities and personal input on things. You learn how to sort out what they say because you know another doctor might be on the other day and might have another view on things.


Bad days and good days

James had ups and downs depending on which day. He had to have sedatives several times (Cloral Hydrate). In the beginning there were many days when he was in horrible tummy pain because of the penicillin. Colics are bad enough but is not even close to the pain James suffers from when he cant do number two himself and when he is full of air. It is very tormenting for him and for others who sees him. When James becomes upset and starts to cry , his saturation level drops down to the high 50´s % after a while he feels the discomforting feeling of too low saturation and most probably feels sick and dizzy. Then he starts to panic and cries even more which makes the saturation drop further. It all turns out to an evil circle. So during these episodes where it has not been possible to break his panic, they have given James or we have asked for sedatives. First of all we have tried with colon-tube and if it would not help then James has been on sedatives. No need for him to suffer when he can have help.
James has also had days where he has been in panic without tummy pains. When he has pain and starts to cry his saturation level drops. There has been times where we have become worried and some staff. Those times he has been happy as Larry, turned pale, dropped in saturation, became worried because of the low saturation and panicked. It happened three times where he had sedatives to relax and go to sleep. Then his saturation has gone up by him relaxing.


The Nano Shunt and some explinations.

The shunt was not too small as it was and it would not have been for a while thankfully! The Shano shunt was a tube made of Goretex and it was about 6mm in diameter (James). The Shunt was attached to the right Ventricle and went up in a bow shape up to the Pulmonary artery. It is through this Shunt James was able to have some of his blood turning red (oxygenated), where it was pumped up to his lungs then transported back to the ventricle and out to his body through the Aorta. When the blood was pumped up through the shunt to turn red/oxygenated by the lungs it flows back to the ventricle again and is mixed with blood which is blue then blood turns purple, a mix of red and blue blood. So blood which was pumped out the body was purple and not fully oxygenated. This means the blood being pumped up to the lungs was purple as well, some of it had already been to the lungs and some blood came back from Vena cava and needed to be oxygenated again. This is why James had become so ill from Stomach-flu (ex). To keep the pressure going in James ventricle and to make a steady flow James fluid volume had been very important. So stomach-flu was not to prefer. When James fluid level dropped James Ventricle collapsed a bit, this gave it less power, pressure and flow to work with. This made it hard for the heart to oxygenate the blood and to have the power to supply the body with oxygen. The shunt was a narrow road to take, a way of speak and when there is a low flow the blood most probably prefers the simple road; through the wide Aorta straight out to the body, this together makes the blood not purple anymore it makes it bluer and bluer. James shunt had stenos (a layer building up inside and made it narrower) just where the shunt was attached to the Pulmonary Artery, in this part of the shunt the diameter was about 2-3 mm. This happens mostly this moment of time because the Shunt is not going in a straight line, it goes in a bow up to the Pulmonary Artery, this is why “crap” more Easley collects like it did to the buffer by the pulmonary artery.
To give James oxygen when his blood volume was too low made no difference, since it was heart related, nothing wrong with the lungs. The only thing they could do was to put him a glucose-drip, give him blood compensator (Albumin) or blood-plasma to fill out the blood volume. This made James pick up and his saturation raised

. There is some colours to choose of for James when his saturation drops. He becomes either very dark red, almost black, blue or ash grey.The very dark red almost black happen when James is in panic and ill with a bad saturation to start with. The Ash grey, pale and blue happened when James saturation has dropped without being upset. It has happened sometimes. I have not really seen smaller variations in him changing to a bad colour since we are what we call “home-blind” we are use to see him more or less blue.

When James had the Rs-virus he became really sick. James started with throwing up very much in the start so they had to increase his blood-volume with all the three supplements above. James had also major problems with his lungs. They were full of flem which made it harder for his blood to be oxygenated. What I also think )if I understood correctly), James uses a bigger part of his lungs than children with no heart condition to compensate the low saturation a bit (just like him having a lot more red blood-cells than normal to be able to transport as much oxygen as possible) this lowest part of the lungs had also collapsed which made it even harder. This is what they call Atelectasis. The alveolus falls together and stuck together . This is why he had all the inhalation to clear flem, open up airways including the alveolus.



Mum and Dad

We have the very best ; Mum and Dad- Nana and Gran Dad!!! They have been flying back and forth from England as jojos to support us take care of 7 children with excellence and taken care of the houshold.They are really exceptional and there are no words of gratitude and thank you enough!!! Everytime James has supposed to be operated they have rushed over. Mum and Dad have a really good view how the Swedish care works by now. They have been waiting hours with us with a sick James and been extremely supportive!!! We are very LUCKY and the children are very lucky to have such a great Nana and Grand Dad!! They/We love them to death.


DISA

Disa is a very dear true friend of mine. She is always there for me and support me. Disa plays an important role in Timothys life and they are great friends.Timothy visits her every other weekend or when it suits us all. All my children loves Disa, first of all it has been Neville who had contact with Disa when I still lived in Höganäs. Neville was with Disa for the second operation for three days so he did not have to go to daycare and be worried. It was like he had never left and he feels safe and secure with Disa. He had a great time with her those days. Timothy spent two weekends on the trot with her. They are great mates.


My Mother and Father

My mother lives in Norway and has a full time job so it is not easy for her to be around. She has been to the hospital twice to see James though and is supportive over the phone. My father has been taken the boys on and off when he has been at home from sea and supported us that way. We are very grateful for all their support.



Support from Friends

We have a major support from friends via email, sms and website. It means very much to us!!!!! Many have spread the word about James and there have been prayers for James by hundreds of people around the world when James have been ill or operated. Thank you for your thoughts, supports and prayers, it is invaluable!!

The Staff- The stars

*Elisabeth*, our contact nurse is a bright shining star****.She is a huge inspiration to me and she has shown me what a tremendious difference an excellent nurse can be to a patient and parents. She has a big fluffy pink heart, a twinkle in her eyes and a big sense of humor. But she also of course has a deep sensitive and serious side. She is just perfect for her job, she has so much I can learn from her because of her huge amount of experience. It is actually her (and James) who has inspired me (without knowing :o) to study to a nurse. It shows "bad" things happening in your life and meeting new people can have huge positve effect in your life, as it has for me. I have not knowing what to do for years since I put my dreams on the shelf when I bacame ill so I whole new future has appeared for me. I am very grateful!

We are so lucky! We have so much gratitude to the staff. It is nice that we can talk, laugh, giggle, chit chat and joke with each other. For me it means very much! It helps me not feeling lonely in the hospital and to have some kind of social life at the same time. The staff I see as friends and I think it just as important for me to make them feel welcome in to us (our room)as it is for them to welcome us to the hospital. They are all a bright shiny group of stars!!!! Thankyou!!!!!!!!!!!!!!!!!!!!!!!!!!!

Saturday 8th of March- Blue Lights

At 03.00 the food drip was finished and I turned it off. James woke up crying but settled quickly. I thought to myself that he would most probably need to go to the hospital in the morning because of dehydration/low saturation. An anxiously crying James woke me up, it was not a normal cry, clearly something was wrong! I picked James up in my arms and he vomited a bit. His colour did not look too good. I walked up to Nigel upstairs and tried to wake him and told him I needed to take James in to the P- ER anytime soon, so if he woke up without us in the house, he knew why. I walked downstairs again and I placed James at the changing table. I took off his wet clothes and he laid there naked whilst I checked his temperature. I noticed the temperature was 40C which is very high fever and I realised I had to take him in. I looked up at James. He laid still with his eyes opened and with his head turned to the side. Suddenly I clearly saw his chest movements stop. I stood there and watched his chest and abdomen for a long time, which would have been for about 15 seconds. Then I saw his chest started to move very fast with tiny movements up and down. I realized he had a real apnea. I pushed him gently and James started breathing and cried anxiously out instantly. He had very bad colour. I went upstairs to Nigel and woke him, placed James with him whilst I called the ward 67. They thought as long nothing more happened to James we could drive ourselves to the hospital. Nigel came downstairs with tears in his eyes. I took one look at James and saw he had turned grey. Nigel said James had vomited a couple of times and struggled a lot more than usual. His breaths had been too far apart as well. We both agreed to call 112. I called and explain what had happened and James´s diagnosis. The 112 operator said she would send help straight away, she asked me to light all the lights in the house so the ambulance could find it easier. She also asked me to call back if he went worse. Of course Mum woke up while I was turning on the lights in every room and I quickly gathered things for James, I dressed and had an eye on James in Nigels arms. We saw the blue lights out in the street. When they showed up his colour had changed in a good way and James was in my arms looking around. I went outside with James. I was not prepared for an “acute-car” to be there. Thankfully they were prepared for the worst. I was almost (sick I know!) embarrassed to have called since James had picked up a bit. But knowing James shunt was starting to be "old" we absolutely would not take any chances. The ambulance was there after a couple of minutes. I was in the ambulance with James in my arms. Tommy the paramedic was in the back with us and Arne from the acute car joined us. They rushed away pretty fast with blue lights, the acute car behind us with blue lights and Nigel trying to keep up behind them :o) Tommy was a very nice man and had a very good way with James. When Tommy put the saturation probe on James, it showed 60%. I actually thought it was lower than I expected and did not really want to know how low it had been before. I explained to Tommy it was not a very bad saturation for James though his average usually was 70%. We chit chatted for a bit and I thought to myself "the men must think I am crazy". I had witness my baby stopped breathing just 20 minutes earlier and I was chit chatting cheerfully (even if you can react that way in shock). But I am surprisingly calm (what I think) especially when I feel I have it under control, as long as I feel I know what to do to help James. Knowledge is a security many times. I also felt very relieved when I saw James answered to oxygen and his saturation went up. Then I knew it was his lungs it was wrong with not his heart.Then what I was scared was excluded in knowledge anyways and I could relax until we saw the doctor. Pneumonia I thought to myself. In a way I think when James has bad times I step into a working role. At the same time as parents we are forced to keep a cool head though James are not gained by us panicking. I studied to an assistant nurse with the dream to study to a nurse to become a paramedic. When I fell ill with my arthritis I placed my dreams on a shelf. In 1,5 or 2 years they are off the shelf again. Thanks to James/Elisabeth I know what I want to work as, as a nurse in cardiology, PICU or Neo. So I have to study for 3-4 years in total :o) my dream is to have Intensive care Nurse on my name tag. I am extremely interested in medicine so it will be a joy and most probably a pain in the neck ones and a while as well. You don´t have anything for free in life.
We found out he had a lung infection but more of a setback from the RS-virus which affected him again when fell ill and he suffered from Atelectasis . Just behind his heart on his lungs a part had collapsed. The alveolus had fallen together, which meant James could not inhale enough oxygen to saturate himself with satisfaction.

Friday 7th of March- Signing in for OP

Eh well, James had been whining and cried for two days when this day arrived. No fever before but of course he had medium high fever on the signing in day. The doctor Sverrir still wanted him to come up to the ward 67 to still do all the check ups and maybe be on pencillin. I felt like I had the whole world on my shoulders while I drove to the hospital. I knew the operation would be off for some days ayleast depending on what they found. I knew my beloved parents in laws was on the plane to come over and support us for the operation. Just Like the last time James became sick just when it was time for the operation. I had a lot of sympathies from the staff when we arrived. Blood tests were taken, x-rays on his lungs, ekg and heart-scan which was held by Sverrir. James was happy during the scan. He has been watching the TV lately, of course Cartoon networks is popular at home and now with James as well. Every time Sverrir added colour to the flow in heart James looked at the screen and did his baby talk. I thought “yeah Cartoon networks, cool!!!!! Sverrir gave James what he asked for. When he started boringly whining he turn on the colours and James was happy again. I asked Sverrir about James fontanel since I imagined that morning it was bulging out more. Sverrir said it can happen when they have the three days fever. Phew, ha ha ha ha so meningitis, enphaceolitis , and all other silly ideas I could throw in the bin. I was ridiculously worried and overreacting this morning. James infection test was 39 and it is supposed to be under 8 if you don’t have an bacterial infection. James x-ray looked good. I said to Sverrir it was a relief James did not have pneumonia since when you have this you usually is around 40 on the infection test. I knew this from before, and it was a big relief James did not have pneumonia when I knew the surgeon then would not touch him in weeks because of the risks. Obviously Sverrir agreed on the relief it was not pneumonia. He prescribed penicillin to be on the safe side. Something was up with James but he could not put a finger on it. James ears were fine and his throat. I felt a bit uncomfortable not knowing why his bacterial level was high.
I had talked to a very dear friend of mine the other day. I had planned to go over to hers for a coffee, but now James had fever and she did not feel well. She asked if it was ok if her husband came up to the ward because they had bought something for James with his operation coming up. M came over, I´ll tell you this to have their support is a true treasure and they are very precious to us. They are so extraordinary unselfish, generous with huge empathy. This couple lost their beautiful boy some months back. Their little a Darling Angel was a heart-child as well. There are no words for how much their support mean to me!!!!!!!! It is invaluable that they know what we go through in many ways which is not easy for others to understand, really. Of course I was stuffing my face with pastry when M showed up. We chatted for a bit and he gave me the gift they had bought for James. What they had bought was priceless. A small reproduction of a wood statue, now in polystone featuring an Guardian Angel holding a child by its hands. M and K´s Darling Angel has a similar statue on his grave, featuring an Angel with a child in its arms. There is a whole selection of statues I now would like to collect. :o)
Driving home from the hospital I had the radio on and the song “show me heaven” started playing. I had a good cry for the first time in a long time; for my friends being so generous and caring even though they have an indescribable lost they are grieving, for Darling Angel and for James now being sick again, yet an operation date postponed and all the disappointment and worries which comes with it.
Nigel, Mum and Dad came home rather late since Nigel had to do shopping and go to the pharmacy for James. The last places James should be in, a shop full of bacteria’s and a pharmacy is even worse. Well this meant my poor in laws had to start their Sweden stay with shopping around. I bet they were not surprised ;o). I fixed tea and tried to comfort a worried James at the same time. When James´s Nana and Grand Dad arrived and they started to entertain him. James still had fever but he had paracetamol regularly. James vomited a couple of times. Not big amounts though since he was on continuous feeding drip. I had James downstairs in a babysitter and I slept in the sofa to have close watch on him.

Tuesday 4th of March- Check-up to clear Rs-virus

James and I were at x-ray2 unit at 11.30. Same procedure as always but this time I remembered my small camera :o). Well it was a strip for James as always, sandbag over his legs and his arms up by the side of his head. Second x-ray his on his side with arms lifted away from his chest. It took a couple of minutes. We left for ward 67 and I had some lunch. I had a little chat with the staff, they were very nice as always :o).I met up with Jenny James head nurse, she is a star and happy and bubbly like me. Elisabeth our contact nurse was there as well, she is unbearable! The three of us had a chat and some giggles. Jenny had some dreams about James and I which were really funny. (Hey jenny if you are up for it I leave him one evening with you in Eslöv hahahaah! I am sure you will see he can turn out to be a lion and not only a sweet little kitten ;o)
Dr Peter Munkhammar (James signed doctor) did the scan on James. During the procedure when he was examining the flow in James Shano shunt the curve looked irregular. I asked him why it looked strange and he said after some more examining that the shunt has steno sis where it is attached to the lung artery a cause of time. I was not shocked James should have had his op a time ago and time is slowly running out it was expected. But of course a worry hit me. I told Peter that we had done our best to keep James away from his siblings as much as we have been able to. But then I fell ill and had a major cold and was knocked out for a couple of days. I said to him it is a miracle he is not sick so far, and the operation is just a week from now.
Peter is a very nice doctor, talkative, a soft approach and has a sense of humour :o.

Monday 25th of February

James is doing fine. Thankfully he does not have any signs of a cold coming on. I have a "man-cold" for sure! Blimey, I have never been so handicapped. Now i know how Nigel feels when he is sick ;o). It is a typical Monday when everyone is extra tired both in the morning and in the evening.

Sunday 24th of Feb- The new travel system

I felt really rough and the children were exhausted. Timothy and Mårten went to football practise. My boys came back from their Dad. Nigel working on and off and doing laundry as well. I did the ground work. James had a session with very bad colour- ash-grey and blue but recovered after a couple of minutes.

Saturday 23rd of February

We had a half family day out :o) We went to buy James a new travel system, a flashy metallic blue. My old one looked a bit riff raffy and I wanted a good ride for James. You know he has reputation to keep up at the cardiology ward!! More than his screaming his head off entrances :O&. Well it was not enough, I will order another register car sign with his name and date as the one he has on his pram. Daddy Nigel is thrilled, not hehehehe. Still trying to persuade him to give me a credit card with no limits, but he has a good head on is shoulders thankfully :o) Well James deserves to go in style :o). Daddy has his new car ;o). Oh have to take a picture of it for you maties reading this.

I might need a Burberry bag though :O) :O)

Later on we went to McDonalds and headed to this massive inside playroom for the children. We never told them we were going there, we said we were going to do a grocery shop. When we arrived we said we were just going to check out opening hours. So when Nigel payed for them to go in, there was four kids jumping up and down. They had a blast!! We kept children off James and it worked well since it is a big place and it was not many there. James baby laughed when he saw Mårten bungy-jump, he thought it was really funny. So he had fun too :o). I started to feel rough and by the time we camed home I threw myself on the sofa. The children was totally exhausted as well.They had their tea, sweets and movie and went to bed. Nigel and I talked for a bit and then he was on his own :o)when I went into lala land.

A non medical advise :o) -if you are an adult and constipated; have a sense of humour, if not, dont be so tightened up and you might loosen up ;o)

Ah my father is out on sea again. Mothers day is coming up in UK, I have the worlds greatest Mum so will not forget!! And Nan of course! All my love to you all!! xxxxxxxx

Blue Baby-Our Sweet Blueberry :o)

It is the first time I have ever done this! Nothing you really do normally :o) but we had talked about it for quite a while. To take pictures of our crying baby. We did it for James so he can see when he is older and how he looked for others who wonder. The pictures don't do him any justice though, he is bluer in real life the flash brightens his colour:o) It takes time for James to calm down as his saturation drops to around 50% when he is really angry/in pain/upset. The last picture is after another one of his sessions - he is as usual totally exhausted since it takes alot out of him. We are used to see him blue of course and for us it is "normal" to see him more or less blue/dark when he strains himself. Otherwise James has a very good colour when he is happy compared to some other babies with HLHS. Our sweet gorgeous Blueberry ;o)

Friday 22nd of February

Blimey poor James was wriggly this morning. I had to sleep holding his dummy to his mouth. As long as he is happy :o) Otherwise it was a calm day. My boys was home today, the have half term leave from school. Since they are supposed not to be around James at all it is not easy to have him home. But they must have a break as well. We took a walk later in the afternoon I had planned to take the boys down to the water to feed the ducks but there was a storm outside and it is turning worse, so we just walked to the local playgrounds. N, C and Et Dad came and picked them up for the weekend. Almost around the same time S, E and M arrived from their Mums. Finally! We have missed them very much. They have spent extra time with their Mum since Sofia turned ill. Nigel was really stressed as usual because of work. I am amazed he is handling as well as he does with everything else around him. The workload is crazy for everyone at his work for the moment. Nigel has two and half employees short as well which they all have to cover for. I am really proud of him he has a very good head on his shoulders, but don’t tell him I said so ;o). Nigel had to start work again as soon as he came in, he, sat on the floor in the living room so he was close to the children anyways, shifting between talking to them, to his mate from work and answering emails. I served James, I cooked homemade burgers from the children, went for a quick grocery shop, started Nigel and my tea. Naturally James had a total Wendy on when I went to the shop hahhahha. Nigel is still working and soon I will order him to the sofa for our Friday snuggle and TV, have a feeling I don’t have to persuade him. He is dead beat tired. Lovely S and E are asleep and M and T are upstairs playing street basketball on x-box 360 soon going on their last game ;o) Night night don´t let the bed bugs bite...... xxxxxxxxxxx

Thursday 21st of Febuary

Slept well :o) yeeiy!! James was a bit worried early in the morning. I talked to my cousin Becca yesterday. Who is pregnant. Well done Nicklas ;o). Also congrats to my youngest sister Emma who is pregnant with her first child! I read it on the guestbook but suspected it already around New Years because of a suspicious MSN message hahhahaa. Blimey, I have been pregnant many times ;o). We will have one more baby, hopefully :o). Oh I know what some think, dont they have enough :o)? That is how it is in life unfortuanely, people have opinions about others lifes and judge from their own wishes. We have eight children with us so we have past most peoples limits already. Had enough? Is a weird question and statement :o) We are pretty old enough to deside how we want our lifes to look ourselves (specially Nigel hahahaha ;o) If we had enough we would not want another baby in the future, if everything goes our way. I have faith. If it is ment to be it is. My eggs have raped Nigels swimmers before ;o) ;o) Another child and our family is complete, we are lucky as it is of course :o) We could have been one less :o(. We have eight beautiful children.

James and I are going to the hospital today for his checkup. James started to have a nappy rash some days back. I have done everything to make it go away but it lingers. He needs something on prescription because it look like a mushroom growth. My poor little boy :o( James will be so happy to read this when he is a grown up hahahaha!

I did not forget the changing bag this time, and not James either (phew :o) I took some pictures before leaving. Poor little man he just has to suffer some times. We take so many pictrures of him I have desided we will have the other childrens own page at James´s website as well. Honestly, we cant make eight websites, one for each ;o) hhahahaahahaaha. Wish we could though because they all deserve it. James website was made for friends and family who wish to follow James through everything and not walk around and worrying about him and us. A sick baby is a sensitive matter and touches everyone with a heart. Knowledge is power to me and it makes atleast me feel safe.

Everything was good with James. Dr Higgins past by and asked how everything was with him and came back later to check James private areas. Yes he had what I thought, a fungus farm growing in a bad place. Poor little man! Anyways he had creamed prescripted for him and it will be gone in a week, hopefully. James weight is now 5.9kg and his saturation is what it was before so no worrries.

I talked to my friend Mia yesterday, it was very nice :o) I was invited out next Friday with some girlfriends. Yeeiiyy! I also have contact with other mums with HLHS children from Little Hearts Matters UK. It is great to have others to communicate with who are in the same situation or already gone through our stage.

Waiting for OP

Hardly slept anything last night. James is a bit worried during nights and I have a lot of pain at the moment. Probably the weather changes and it is cold outside. Nigel and I talked to about this summer. Maybe we can go away for a week to Italy with James and maybe the two oldest boys. Fun to have M and T with us aswell but then we need time alone, but then we dont have that alone with little James. If James is well enough to go, if we have managed the Dedication for James in England before, many ifs but so nice to talk about :o). Otherwise I am pretty low because i dont really LIVE I just WAIT. I wait for James operation. Maybe things will be a bit more normal than it has been uptil now. There will be many things still different but hopefully James will manage to eat by himself again so he does not have to have a peg fitted on his tummy, instead of a feeding tube.I am hoping for James to manage eat by himself but at the same time I am preparing myself for another operation for a peg. My way to cope is to prepare myself for the worst. Not very positive but my defence-mechanism :o). We have been a bit spoiled lately. James does not throw up six seven times a day anymore because of the feeding pump. There is a high risk of that starting again when he is supposed to try and eat by himself again. But we will take it as it comes. If he can manage fully by himself then it is wonderful, if not he needs help.
Talked to Nigel during working hours several times today. Him calling short times to have a break from work and stress off. Very nice :o) My gorgeous darling....

James and I took a walk to pick up Neville at daycare and meet up with the rest of the boys coming from school. James was happy as Larry smiling to left right and center enjoying the walk. He had a nap outside for the first time in the pram, right by the kitchen window. Neville were outside playing for a while. Do I need to say that James sleeps through everything? Some parents are whispering around their child when they are a sleep and they tell guests etc to keep their voices down. Makes it uncomfortable for everyone and is it not the relaxing that is the purpose, not tiptoeing? Blimey! I have never done such a thing. Take my advise it is a BIG mistake! You do yourself and the child a disfavour. James usually sleeps down stairs with all of us moving around, so have all my boys done as babies the first months, James sleeps when the children are playing etc so he does not wake easely .o). Then of course we dont allow screaming and running around on any circumstances :o)

Tonight we are having Cumberlands (thankyou Mum and Dad!), with mash, gravy, vegetables and cranberry saus. Yummy Yummy in my Tummy!!!! :oP

Monday 11th of February- Signed out

I was stressed going to the hospital. Mainly because I knew i was about to drive Nigels old car! Well it is right hand drive which i dont care about. BUT!! Parking in the parking house is not the easiest. I stressed off and first made sure i had the monthly parking card with me, mixed james milk since i knew it would take more than four hours, packed medicine and everything. James filled his drawers. Happily blue in his face, he could manage himself. "Congratulations you could do it without pain and thankyou for doing it now hahahaha". I quickly change on him, out the nappy changing bah by the door, grabbed the keys, placed James securly in the car, locked the house door and cleared off to the hospital. All I could think about was the parking house. i knew i had to stop, place the gear in neutral, pull the handbreak, climb over to the passenger seat, pull in the card in the machine, throw myself back to the drivers seat, gear one and loose the handbreak. I did and the blessid gate did not open. I had been so concentrated on the proceedure I did not see if the gate opened meanwhile. I did it again and it said monthly card places were full! Outside it had said four places left and I was first in line! I had to take a normal ticken and drove in. Unpacked james, took out the push chair to place James´s car seat in it and.......... My FLAMING (oh I just thought it to myself :o& ) changing bag!!!!!!! Where still nicely by door at home. NOT my day!!! No purse, no money for the parking ticket, I knew everything else James could have at the hospital. I sighed to myself I believed Nigel would have a strop on and I would have to wait at the hospital for him to come after work.

I rolled my eyes explaining how airheaded I was to the staff and asked if they had Nigel´s mobile number and if i could borrow the phone. Of course :o) They were sweet as ever. Well Nigel did not have a strop on and offered to come earlier. I responded with "home sweet home I can stay here until you arrive after work, no worries". I was so releived since Nigel did not a have a strop on HAHAHHAHAHAHA!!

Everything was fine with james, his saturation was 77% when he was happy. Of course he was crying for ten minutes so they had to wait for to him to calm down so his saturation would not show 55% instead. The nurses was wonderful as usual and served James with food and me too!! Annika the research nurse borrowed me 50kr so we could drive home without waitng for Nigel. I am so GRATEFUL!!! Thankyou Annika!!

I cant stand when people have strop ons because of mistakes, noone are perfect and we ALL do mistakes. I have in my "former" life taken way too much two faced cruelty I do NOT do so ANYMORE and noone else should either!!!!! Yet again aproaching is very important to me, empathy and have a laugh about it, it happens to everyone. The person who have done a mistake feel bad enough to have someone else pointing fingers at it. Shrug and have a laugh for Petes sake!!!!

Sunday 10th of February

Another sleep in. We drove to Lomma and had another lovely walk in the sun by the sea. I shopped some fresh fish for my dad in the harbour. Dad came and served me the boys back. He spoils me rutten! :o) We are very grateful for a weekend "alone"!!!

Saturday 9th of February

We had a VERY quiet morning, James had his medicine and food drip started as usual at seven as usual of course. We had a sleep in. Nigel fixed us a lovely breakfast and we headed out for a long refreshing walk. The weather was absolutely lovely!! We followed the small creek in Kävlinge. There was a little cold breeze but the sun stood really high and we could smell spring in the air. We had time for some smooching :oP . Seriously we had time to act like we were fourteen hahahaha. You all who knows me know I am not the shy type and my mouth are full of VERY filthy jokes (when i am not behaving) but even Nigel embarrassed me for a while and we probably scared some poor elderly couples off ;o). James was not embarrassed (main thing) and enjoyed his ride in his pram. First time in two weeks he had been out properly. Stood for a while watching the ducks swim around and we tried to show James. He baby-giggled we wanted it to be because he saw the ducks but it was most probably at us. Our tiniest darling, thankfully we can see despite everything he goes through, he is a really happy little boy. He is so brave, more brave than Nigel and I together. James is now 4,5 months old and he has gone through so much in his young little life.

We had a lovely evening together!!! I called my father during the walk to hear how the boys were behaving and doing. They had been to Denmark and he had spoiled them rutten, of course :o) Not surprisingly C´s fox behind his ear had showed up so I had a talk to him and and promised (not threatened ;o) I would come and pick him up if he did not shape up. C suddenly decided to calm down. Guilt hit me again, but not because they were with my father and had a blast :o)

Friday 8th of February

James could return back home on leave over the weekend. My boys went to my father to have some quality time with their grandfather; Nigel, James and I had some quality time together. We had a lovely meal and all three of us snuggled in front of the TV. I missed my boys very much but since James should have been in the hospital I had already arranged with my father for him to have them and they expected to see him. Then Nigel and I really needed some quality time as well. With eight lovely children it does not happen too often :o)

A sick sibling- in a positve light

In normal cases you feel guilty about your healthy children, when they are sick or have a cronichly sick sibling there are no words to explain it. Our children takes it really well. My four boys lives with us full time. So if they ever get a break from the new life we all live, it is every other weekend when they go to their father and sometimes Timothy visits our friend Disa in Höganäs (bless her heart). M, S and E are with their Mum every other week. So they have a break from surprise hospital visits, the mental stress we try to hide as much as possible for the children and the circulation around James over all. There is a lot we are used to with James and others dont realises what a difference their is to him when he is feeling well to other children and how much more time it takes. It takes time and has too. M, S and E also have every other week where they thankfully have a Mum who can give them all her attention and it circles around them three her week. Then they come to us and there are five other children, one is seriously ill and naturally they dont have all the attention just them three. There is always a positive side to things and a bad, we all deside which one we want to focus on in life. My boys have already gone through things they NEVER should have. They have been seriously let down by an adult and I am their stabillity (and now Nigel as well of course). I am so surprised they (and S,E and M) adapt so well and takes things naturally. Last time I was in the hospital for fourteen days!!! Nigel was home with them and Mum and Dad when they were here. But still, I am their Mum. I always seem to worry alot more than I need to. They take it naturally, they are used to me rushing off to the hospital. Sad but true. Many times I have said I´ll soon be back, and I lied I was home a week later. I have learned my lesson. I am not saying having a sick sibling is POSITIVE but it can be positive in learning about life like it is for all of us.; Never take life for granted, there are times when we have to stand back because someone needs it more than us, empathy, sympathy, compassion, we can feel jealousy for a good reason; if we have not opened up and said how we felt in surtain situation, we are taught to converse more about feelings, we are taught how to listen to others and be grateful for life. In that light it is "positve",even if we all wished James were healthy. But in the same time, if James did not have his special heart and scar, he would not be our James! Of course we would not want anyone else than him. I have expected T,Et ,C and N to feel worse. First of all the have gone through hell before moving, then it was the big moving part, changing school and daycare, a new sibling, a sibling close to death, traumatised and depressed Mummy, a Mummy living on and off in the hospital etc etc. I am gobsmacked!! I alerted the therapist at the hospital for the boys and the three support if needed, no need so far :o). Maybe all the explaining is paying off? Maybe them having it very tough before knowing I stood rock solid supporting them and took action together with their school makes them feel safe? Even if I am not here they know they can trust me and I love them madly. I wish sometimes life looked different for all of us and mainly for the children and James. But I am grateful to life. I am grateful we still have our James and so is his siblings. I am sure they know deep down they are the lucky ones. So am Nigel and I. We are lucky to have eight beautiful uniqe children in our family!!!!!!!!!!! I am very proud of Nigel and all our children. I Love You ALL very dearly!! xxxxxxxxxxxxxxxxx

Thursday 7th of February

Everything went well. James kept his Saturation and it was around 75% sometimes lower and sometimes higher. It is how it is :o)

Saturation meter

Wednesday 6th of February

Finally I had my baby back!!!!! They closed all extra oxygen support from the hood and James stayed between 70-80% in saturation. Mostly above 75% which is the limit for the doctors, when James is happy :o). It was so wonderful to finally have him out from his UFO, tent or whatever you would like to call it. James had been "camping" for almost two weeks now in his oxygen tent. James had his pinguin mask on during the day. So when I took him out from the room in the pram I had a portable oxygentube with me, plus his food drip and the saturation metre. It was ridicolous how happy i was to finally have him with me just out from the room. I showed him off in the pram and james was fascinated about all the lamps above him. Of course he was greeted by the staff and he fired away some smiles. When we finally came outside the room I called Nigel silly happy telling him the good news. Well after a while in the corridor I did not know what to do anyways so we went back to the room again. Hahahaha.

Elisabeth came over for a chat and I brought up my feeling of insult and humilliation after the clumpsy comments from the doctor. Elisabeth said she would deal with it and I was releaved I did not go out to the staff in rage unrationally earlier. It was nice to have Elisabeths support and she totally agreed and understood why I felt as I did Saturday night. I pointed out it was the approach, someone assuming behind our backs and if it would happen to first time parents. It was the main reason why i brought it up with Elisabeth I did not want it to happen to anyone else. The relationship to the staff is VERY important to me and I am VERY fond of them. So it felt good to bring it up so I could let it go and not worry.

The conselour Anita came over to inform me about leave with very sick child, health benefits for James etc. We had a nice chat and giggles as well. The physio therapist came over and gave us praise as parents because of how we had been working with James so he shifted flem and became better rapidly. It was really nice to hear but I felt like a big question mark hahahaha. Well I tried to put it on my plus account to feel better about myself :o).

Nurse Elna came in and we talked about James oxygen. The doctor said they would try and take away the oxygen by the next day but we agreed to try this day instead since he only had 2,5L at that time. It worked splendidly!! :o) The telemetric (the monitoring of James heart from the nurses room) was also taken away, I felt totally safe about it. They kept the saturation metre on though. James saturation dropped a bit a couple of times, but who have time to breathe when you have bunnies you can hit and kick?? :O)

James like baby superman in his UFO

Tuesday 5th of February- Still in the UFO- Day 11

I woke up at 08.00 when Viveca was with James and doing her controls on him. James was fine in saturation and sweet nurse Carina entered the room. She said the doctor wanted her to lower the oxygen in the mask. I asked her why they would not lower the oxygen in the UFO instead? She said she did not know. Doctor Petru came in doing his rounds. He is a medium short , dark haired doctor by rumour he is from Rumania, I must remember to ask him. Most importantly he is very kind and takes his time to inform and to explain things. First I asked him why they lowered the oxygen in the mask first and not in the UFO? He said because James seems to tolerate lower oxygen in the mask but not in the tent, most probably because in the tent it is humid which helps freeing his airways. I asked Petru if his saturation suddenly dropping if it was because of his heart. He said it was the case because of the shunt being smaller and the circulation varies. Either it goes out in the body or to the lungs. He said James used to use a bigger part of his lungs inclusive the fistles healthy children don’t use. But since his body needs oxygen this space has been used as well. Now when he is ill and has a lot of flem this part is not used and his saturation drops. Adding with his circulation is not as it has been.
James oxygen was lowered from 10L to 5L the day before. Today the lowered it to 3L. So far so good :o)! I just want to be able to take out James from the UFO so I can hold him and snuggle. I have not held him properly since 11 days back. I miss him :o( and so does his devoted Daddy of course. I called Nigel after Petru had left to give him an update. I want to do it as quick as possible when I know things so Nigel is included as quickly as possible.
It is amazing how James accepts everything. He is not just a little toddler who just sleeps eats and fill his nappies. He needs more attention of course and has his own little language. He love mummy and daddy but for some reason he appreciate attention from sweet nurses just as much. He is a real ladies boy our little charmer. Fifth teen years from now I will be the one guarding our sons room with a shotgun :o) of course loaded with salt but I am a fairly good shot ;o).

Monday 4th of February- Sleepy Day- Day 10

James was a bit worried during the night. He had his Ventoline inhalations at 24.00 and 04.00 as ordinate. I heard the alarm go off several times because of James saturation going down under 65%. At one point the nurse came in and she said James pulse was a bit too low, it went under 80bpm most probably because of the kloridhydrat. So she inhaled him with adrenaline to make his pulse raise. So because of saturation and too low pulse he had adrenaline at 02.00 and 06.00 as well. He woke up several times where I was able to calm him and go back to sleep. Wonderful Birgit came in at 08.00 and weighed James and washed him off. We agreed he would finally have a refreshing bath because he was minging to say the least. He is living in a very humid and warm environment, I am just waiting for him to grow mushrooms under his arms and chins ;o) Eeewww poor boy. You should see him in his soft chair we put him in. He looked like a little Buddha n his thrown. :o) Ingrid and I gave James a good scrub. Anita came in to have a talk to me. The nurse came in with medicine, James had more milk connected to the pump. I cracked a joke with James and Michael Jackson and their oxygen tents.
Nigel and I talked a couple of times and he came over for a while before going home to the boys.
I asked to talk to Dr Thomas during the rounds. He said we could expect James to have extra oxygen support for weeks, it is going to take a while for him to get back to where he was.
Viveca James´s assistant nurse for the evening was kind enough to stay with James for a while so I could take a quick walk outside and get some fresh air. I met up with Karin by the patient hotel and she showed me the way to little angel darling´s grave. It was of course really, really nicely decorated his parents. We had a quick walk back and a cup of tea and a chat. James was a bit anxious and had tummy pain. But his tummy was way better today.
James was very tired this day and slept most of the time. I went to bed early and it was one of the most calm nights since James fell ill.

Sunday the 3rd of February- Obstructive Bronchitis- Day 9

I woke up 07.45. Blimey did I sleep? I felt like a zombie. Assistant nurse Ingrid was with James and she had put him on the scale. She is really a sweet person and she fixed things for James, did her controls and James had inhalations. First Ventoline, Pulmicort and later adrenalin.
Dr Eva came in and I asked her what James had now and she said it is Obstructive Bronchitis. I know what that can mean. Elliott had it as a baby and it usually starts with a RS-virus as it did for Elliott and James. Meaning if we are unlucky James can have airway problems every time he becomes sick or have a cold. If we are lucky he won´t have it more or just a couple of times. Me? I see many more days on and off in the hospital, but then I paint the devil on the wall :o).
Ingrid asked if I wanted a nap and she offered to babysit James fro 13.00-15.00 I gratefully went in to another room for some rest. When I woke up Nigel and the gang had arrived. Mum and Dad had bought Mårten a birthday cake we all enjoyed. His birthday is on Monday the 4th of February.
In the evening James needed help with his tummy, inhalations and he was really anxious so the nurse gave him a sedative called kloralhydrat.

Saturday 1th of February- RS-virus -Day 8

I did not sleep much. James was worried during the night, with a stuffy chest that needed inhalations and tummy pain. I was more awake than asleep. The morning started with him needing an inhalation. They took a flem test to check yet again test for RS-virus infection. It turned out negative. The doctor arrived at elevenish. Most of you know we have planned for James being christening at Easter in England. Well it would have been Easter if he had his operation done. We planned to drive naturally, even if we had heard from the doctor it was ok for him to go by plan we would not risk it anyways. I had not brought up the christening with Elisabeth, we would do that when the operation was done and when James was stable. We now have GPS which includes maps from throughout Europe. The best thing about it is that we can just press the SOS button and it will show us the closest way to a Hospital from where we were. Anyways I had been complaining a bit disappointed about it, of course. That it now would be off until the operation is done. Apparently some staff member had not really listened to what I had said but made assumptions about it and brought it up with the Doctor, instead of with me. Dr Eva did the rounds today and she came in. I greeted her because I had met her up in ICU before. She was the one who did the ultrasounds on James at that point. She started with saying, “James needs an operation” My heart almost stopped and I had the time to think, oh blimey they really think he is more sick than I imagined, he is in danger or they would not do an operation now. My eyes almost popped out and I asked “NOW”? She replied with now when he is healthy again. I thought “DUH, I have known that for months, what is she on about?” She said “I have heard you are planning to go England” I said “yes, so?” She said James can´t manage to fly how he is now” I said I know and we have never considered flying we will go by car, she and staff had assumed even if I had said we would have DRIVEN to England. She continued with “James needs his operation first” and I replied with “yes of course, we would naturally not go until after the second operation as planned!!!”. She said “oh, good”. I thought to myself, what in Gordon Ramsey is this????!!!! After, she asked if we had asthma in the families etc. She said when James has been well for a week they will call him in for an operation. That was really good news. Dr Eva ordinated Pulmicort inhalations and Betapred tablets, both cortisone medicines, to finally actually treat his flemmy airways. Good news to me/us. But have staff going behind my/our back assuming things and go over my head and talk to a doctor made me fume for the rest of the day. I would have asked what the F is up straight away to Eva if she had not startled me. I was gobsmacked!
T, M, E, S, Nigel and Mum and Dad came over and stayed to the afternoon. It was really nice considering, both Nigel and I are mental tired wrecks. The worrying about James takes a lot of energy from us. Adding on that, there was someone in the staff who thought we would put our precious boy at risk! It was so humiliating it was what made me fume. I have had him in my arms dying and they assume I would put him at risk??. I would walk through fire for any of our children.
James was still stuffy during the day and he stayed put with the extra oxygen. His tummy was a bit better and he managed himself better now. My friend Karin was sweet enough to come around for some chitchat. We had a nice girl gossip and mummy serious talk before she went back home to her husband who had cooked a lovely meal for them. Meanwhile she was with me, food arrived which I had ordered together with the staff. Noodles with chicken, lovely!! Ingrid, James assistant nurse for the evening, brought it in on a tray and she had added milk and a chocolate pudding. How sweet!!!! I am really fond of the staff here and I trust them. I am a very open person and believe in straight conversations. That´s why I was so upset, it would have been so easy for this person/ persons to have checked with me, that I had no daft ideas that would have jeopardised our son!!
Evening came. I called Nigel and I said I would call back after “Pride and Prejudice” at 23.00. Well I fell asleep. I woke up at 00.30 by James´s horrible breathing, he needed inhalations. I started thinking of what had happened earlier the last day. I started fuming again. I started thinking of their ethics, morals, respect, common sense and their approach towards me. Fuming. I had to call poor Nigel, so I did. ´Nigel tried to calm me and said I could bring it up with Elisabeth. We hung up after kissi kissi and lovy lovy :o) But still fuming. I have emphasised before how it upsets me when staff don´t know how to approach the caretaker or caretaker´s parents with respect and common sense. It is my profession. The staffs have to consider, we are parents with very sick children, we are parents with a lot of worries and I am lucky. Before James I have had four babies, I have great confidence in being a mother. As I said before, hospital environment is my work area so it does not make me feel insecure. But what if I was a newly mum? What if this was my first baby? What if I was insecure in everything in the hospital and scared of what they were doing with my baby? What if I was very insecure in my role to the staff?? What if someone else will be treated in that shitty way? I was so fuming I could not sleep. I finally put on the TV and watched women who wanted breast implants on Ricky Lake show. James woke up several times of course and I could assist him and ask for inhalations. What a waste, so incredibly unnecessary!! Because someone coward was too afraid to ask a direct question to me and instead sent a doctor to point finger. Still fuming... I fell asleep again at 05.00.

Friday 30th of January RS-virus Day7

James was anxious during the night. On top of that, the sensor to the apné alarm lost contact with his tummy so the alarm went off, I stood attention by the bed in a hurry. I checked so James breathed as he should and I attached the sensor back on his tummy.
James woke up in a bad state. He cried hysterically because of his tummy. They helped him immediately with a catheter. You could hear his every breath since he was way more flemmy. His saturation was below 60% which was a bad sign. He was worse than the other day. I swore to myself, he had done so well and now taken two steps back. James had lot more flam and the saturation was down to 50-60%, inhalations, suctions, panic attacks. The doctor wanted James to be on a Be-pap support which they would fetch up from Child ICU. The physiotherapist asked if he could speak to an anaesthetic doctor before he ordered a Be-pap support, Anaesthetic doctor Valeria visits and says he does not need Be-pap but definitely needed more oxygen support. James had more strained breathing with more tummy inhaling, but not as bad so Valeria thought he needed a Be-pap. She ordered Penguin oxygen mask to James. This is a mask with open sides, made of soft silicon and on top of the mask there is an image of a penguin. Really cute! James was not very impressed, but when I squeezed in his dummy inside the mask he was happy again. Well he fiddled around annoyed from time to time, but I don’t blame him. He is a good boy. James is a very, very strong boy and everyone he meet he impresses. When James is cross, he is really cross and usually for a reason. He is not a whiny child in between. His saturation can go down to 38% and he still puts his heals down the mattress, throws himself backwards, black-blue in his face and waving his arms in fury. James is truly a fighter and we are really grateful!! He is also very active I believe he will make us run after him in a short future and he will have a great big cheeky smile on his face :o)

Thursday 30th of January RS-virus Day 6

The doctors had discussions about soon try and reduce oxygen. They would let him be this day, but he was already doing better. Saturation looked better and I tried to count out when we possible could be able to get ourselves back home again. I missed normal life. James cried much of pain in the morning the assistant nurse said she would try and put a colon catheter and see if it helped him. James screamed himself blue. Until the catheter was put in, it really helped him. He instantly stopped crying and started baby talking happily. Poor baby it was heartbreaking to hear him cry in such pain. It was devastating to realise James had not the strength to pooh by himself. He was helped with it several times. He woke up screaming and a lot of air and pooh came out instantly when they helped him. It hurt me to see why I had been hysterically crying at home. He needed to empty is colon several times a day instead of one to make him feel better.
Nigel came over with E, C and N. It was wonderful to see them!! We went over to the playroom, Elliott made his homework and they watched a movie for a bit. I had missed them and missed them so much, but emotionally I was so much up in James. N went bored stiff after a while and longed home to Nana and Granddad. It made me happy, since he did not suffer missing me madly and he actually had a nice time at home just as the other big boys with Nana and Granddad.
I took the boys over to check out from the patient hotel. Since he was feeling better they would not have staff with him during the night. The boys thought it was both fun and scary to walk underground to the hotel, a bit dangerous thought with the trucks coming in high speed. It exited N. Nigel watched over James of course.
When sleep time arrived. The alarm was placed out in the hall so the staff would here the alarm if James saturation went too low. They put an apné alarm on James so I could sleep without worries. It was not a calm night.

Wednesday 29th of January-RS Virus Day 5

The doctors felt optimistic today. They wanted the staff to take James out from the plastic oxygenated hood and try and support him with a cone instead. Elna was the main caring nurse for James that morning. She is sweet, humble and have a sense of humour I like, The other day she painted red flowers on James´s “curtains”. Because I joked and said he could do with curtains with flowers on them instead of plain white ones.
We took him out from the hood where he had 10l of oxygen support. We had to put the cone on full speed on 15l and I could see how he went lower and lower in saturation. He was just above 60% for the most of the time. Elna wanted him to stay outside the hood for 2hours to see how it developed. I was negative and thought if I had not gone higher in saturation in 30 minutes no miracles would happen later either. I started to feel worried about James, he started to get anxious but I have all trust in the staff up here. So I bit my tongue for a while. Anyways he was back in his hood again, he was back camping again ;o). The doctor Petru who was a new doctor for us said they had been a bit too positive and they would now wait a couple of days to try again. I felt relieved. All I wanted was not to make James suffer more than he already had done. Of course it was not their intention either, nor in 67 or in 61. The staff down in 61 is naturally a wonderful staff and excellent in their line of care. Keep in mind, James belongs on the cardiology ward 67 and on 61 don´t all of them have experience in heart children. They are specialised in infections. So I absolutely don’t blame some of the staffs for being insecure, they had done an admirable job when he was there. But as I mum it makes me feel anxious when there is not heart expertise around at all times.
When the evening came I was exhausted. Blimey, I ate way too much chocolate; I will gain 30 pounds before we are out from here. Nigel offered me to go home and he could stay. I missed the children at home very much. But I could not leave James. Naturally I now Nigel is just as capable as me in James´s care. First of all I am the one mainly caring for James of course since Nigel works, James had been very ill and I would not be able to relax going home anyways, I would still be in the hospital in my thoughts. I did not want to disappoint the boys. I pleaded to Nigel to bring them over the following day instead. He promised :o).

Tuesday 29th of January- RS-virus Day 4

James is feeling a bit better. He has a lot of tummy pain as he usually has :o( .
He has been crying extremely much at home, or screaming of pain for ten minutes and then fallen asleep of exhaustion. Elisabeth and Lotta recommended lactulous a slight laxative to make it even easier for him to pooh. Even if it had normal consistency it was too difficult for James to pooh by himself. It helped for about 1.5 weeks then it was back to how it was again.
One of the nurses said they were going to take another RS-virus test on James and he would be moved somewhere depending what the test said. Either up in 67 the cardiology ward or at Child ICU. Of course ward 67 did not want a RS-virus wander around in their ward so I found it unlikely they would take him and he was way too well, thankfully, to be taken up to ICU. The infection ward chief definitely had a strop on and wanted James moved since he took a lot of his staff. I was happy about that since it made me feel insecure and I felt unsafe to have him on ward 62 since some of them were insecure when it came to James low saturation and special heart. Nigel came over as he did every day. I was exhausted. So was he. All the mental stress you go through inside. The worries about James had been worse of course these last couple of days. But he was going in the right direction, he started to feel better. I was not, O was really angry inside. Poor Nigel thought I did not want him in the hospital with me. I was full o f adrenaline. James´s panic attacks had taken it course. It affected me and I kept it inside of me. The nutritionist Lotta came over and had a chit chat with me. I forgot to ask her the most important thing, if she had any formula without cow milk protein to offer James. Just to try and see if his tummy pains went better. I waited hours to find out where James would be moved. Thankfully Elisabeth came down and talked to us. She wandered off to find out where we were going. She goes straight to the top. Ten minutes later we learned that James was going up to 67. It pleased me, home sweet second home :o). We can always trust Elisabeth´s. She is our link outside the hospital and our ass-kicker ;o) inside the hospital. She is gold.
Viveca James´s first caring nurse came down to pick us up with young nurse Elna. We had a fun walk up to 67 with, oxygen tank, drip and everything else. Nigel took some pictures of us walking up. When we passed the reception in 67 we were greeted. I was silly happy. It made me feel safer, the staff here knew James and had handled 100 of 100 heart children. I knew most of them. Most importantly I knew they were not insecure about the care of James. If the staff acts insecure I become very nervous and feel angry because of this.
Soon in room 8 James realised his advantage to be moved. He had a play mobile with rabbits in different colours over his bed. He was happy as Larry!! Of course the sick humour I have made me call them his playboy bunnies, probably only me laughing about it ;o). James had a fairly good day. In the evening two very good friends of hours showed up with food, magazine, book, drinks and sweets. So sweet!! They have practically lived on ward 67 for 6 months so they have a lot of tips. Devastatingly their baby boy was now an angel. They knew how to take the underground corridors to get to the hotel. When it is late and rainy it is not fun to go outside to walk to the hotel. I booked in to the patient hotel since James still would have a nurse by his side during night. My friends kept me company and showed me the way. Nigel had left a bit earlier.