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!!!!!!!!!!!!!!!!!!!!!!!!!!!
No comments:
Post a Comment