Well, being in the hospital for a long time after the third stage is very hard as well of course. But if James will not have any complications (which are VERY rare) after the op I will be very grateful!! Then there will of course be a struggle when James is hooked up to drainage pump (since they can start collecting a lot of fluid around their heart and lungs) on and off for weeks or months, it will be tough and we will just want to go home and continue our lifes. Of course there will be a contstant worry for James and his siblings back home. But we are lucky, we live so close to the hospital. There are many famillies who needs to be seperated when they have a older brother/sister who goes to school somewhere else in the country. So for us it is "easy" considering.
We have been spoiled lately, James has just been over night ones since before the summer! So I have "forgot" a bit how it is being "locked" up in there :O). James has started coughing this week. It has clearly affected me. Deep down I remmeber how it was when James had his lunginfection the last time and he had apnés. It did not feel "comfortable" to have him stop breathing for long periods and I had to push him to have him start breathing again. I will never get away from those feelings and visions. But cross your fingers,James has had bad colour (yesterday) but no fever, that is a good sign of course! So as long as he stays like this and not go worse James can win this time again without hospitalisation.
It is amazing when I think back everything he has gone through, and we. James was on his back in a bed inside a see through hood for two weeks. Twice he was so bad he was an inch from PICU. Everyone is amazed how happy go lucky he is, always close to smile and gone through so much. That is children for you! They are absolutely amazing, they take it as it comes and things very naturally. Look at all James´s siblings. They are all heroes :O). We have been very causious about how much they should know. We always answer questions honestly without adding more or less, we inform them about the most necessary as children they take it as it comes. When a child starts worrying much, many times it is because we as adults put our worries and emotions on their plate. Which is way too much responsibillity for a child to bare, adult problems. Children needs to children :O). In the same time they should not be protected from life, where it is not always fair,very sad and tradgic sometimes. It is a balance, like most things.
We are hoping for a trip to England before James´s heartcat to see Nan, Mum, Dad and our lovely funny friends Lorraine and Andy with family :O) etc.
It is a "lovely" season now when the infections starts..
Hearthuggies to all of you.....
We have been spoiled lately, James has just been over night ones since before the summer! So I have "forgot" a bit how it is being "locked" up in there :O). James has started coughing this week. It has clearly affected me. Deep down I remmeber how it was when James had his lunginfection the last time and he had apnés. It did not feel "comfortable" to have him stop breathing for long periods and I had to push him to have him start breathing again. I will never get away from those feelings and visions. But cross your fingers,James has had bad colour (yesterday) but no fever, that is a good sign of course! So as long as he stays like this and not go worse James can win this time again without hospitalisation.
It is amazing when I think back everything he has gone through, and we. James was on his back in a bed inside a see through hood for two weeks. Twice he was so bad he was an inch from PICU. Everyone is amazed how happy go lucky he is, always close to smile and gone through so much. That is children for you! They are absolutely amazing, they take it as it comes and things very naturally. Look at all James´s siblings. They are all heroes :O). We have been very causious about how much they should know. We always answer questions honestly without adding more or less, we inform them about the most necessary as children they take it as it comes. When a child starts worrying much, many times it is because we as adults put our worries and emotions on their plate. Which is way too much responsibillity for a child to bare, adult problems. Children needs to children :O). In the same time they should not be protected from life, where it is not always fair,very sad and tradgic sometimes. It is a balance, like most things.
We are hoping for a trip to England before James´s heartcat to see Nan, Mum, Dad and our lovely funny friends Lorraine and Andy with family :O) etc.
It is a "lovely" season now when the infections starts..
Hearthuggies to all of you.....
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