Wednesday 9 April 2008
Tuesday 8 April 2008
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
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!
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.
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.
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.
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