William's bug is responding really well to the antibiotics and I would have been hoping to go home some time next week. Things are never that straight forward with William these days. His fluid balance has gone a bit off and he is currently on his TPN 24 hours a day and extra fluid overnight. We are really hoping things settle down over the next few days as we will not be allowed home until he is stable on something like his current home regime. We are VERY lucky as we have learned that William is growing a bug called enterobacter sakazakii. This is a very nasty little bug. We found it early and he responded to the treatment. We do think it has been living in his gut for some time though where it would have done a lot of damage. If so, this could explain why his condition has deteriorated so quickly over the last few months. I am a bit of a detective and keep questioning the docs about it all. Of course, no-one knows and no-one would like to commit to a strong opinion but they all agree that it is a viscious circle. Bugs like this attack the gut, the symptoms get worse, more bugs colonise the gut and attack it...to the point that the cells that are there to protect the rest of the body from this bug ecosystem are not destroyed, providing a route out for any little blighters who fancy taking a stroll around the rest of William's body. When they find his line they think all their Christmasses have come at once - there is a nice wall to cling to, plenty of food and no immune system to attack them once the TPN has been stopped and the line is clamped. There they breed, ready to be pushed back in greater numbers when the line is used again. Our team are researching 'line locks' - an antibacterial solution that can be put into the line while it is not being used to make it a lot more hostile to potential inhabitants. Of course, we need to get back to something less that 24 hour TPN again before this becomes relevant.
As William has this nasty little bug, we are in strict isolation. There were no cubicles on our usual ward so we are next door. At first, I was very unhappy about this. Here, I am going to get a bit controversial and I would be really interested to hear if anyone else has had similar experiences in hospital and, indeed, if and how things are different among other groups of patients in other hospitals. When we first arrived as a 'gastro family' in our hospital we entered a very strange world of parents and children who lived for months, even years, in hospital or in and out of hospital. At that time, this was a very supportive set of people. We were like a family. Readers that have been with me from the start will know all about the beautiful Riley and his wonderful parents, Helen and Adam. We shared a double bay and we were like flat mates. Riley died and we were all devestated. He was one of six gastro children who passed away that year and everyone was looking out for each other. We were worried for each other when the children were sick and happy for each other when things went well. Things are very different now. There are a lot of families who have been around for a very long time living in an institution. There is a kind of hierarchy now - almost a 'top dog'. This is a bit fluid and can alter a bit depending on who is in. We are not so supportive of each other and there is almost an element of 'competitive parent syndrome' going on among some of the parents. If we were in school, certain children would be the best. Here, they are the sickest. Perhaps because the sickest child is the best patient and that is the most important measure in this strange and un-natural community we are in. It is only too easy to get sucked in and join in. I have never liked this but now I feel even less a part of it all. I was feeling a bit alienated but my precious week of 'normality' when all my children were at school and I could come home and work, clean the house and get a hair cut has woken me up again to what life should be about. I am so glad I went to the first session of my journalism course rather than staying here on Wednesday as that was a turning point - I chose keeping my grip on the real world over getting pulled back into the things that matter in this world. At first, when we were moved to a new ward where William know no-one at a time when he was feeling unwell and I was worried about him did upset me. I felt that it reflected our standing in this wierd hierarchy. However, we settled here quickly and I am now enjoying the break from 'parent politics'. It is a lot easier to keep my head down and get some work done in the evenings and I have found myself much less frustrated by things. That is not to say that I don't like it on our usual ward, far from it. That is our second home and I miss the staff. They are only next door though and I have still been able to chat things over with those who know Wills the best. It is nice to meet new people too. When we first got here, I was begging them to find a way to get us back to our usual ward. Now, I am easy either way. There are good and bad things about both. I have reflected and learned a lot from the break from the norm and am armed with new strategies to enable me to keep being the me I am at home and not to become institutionalised. I think a lot of this has to do with the optimism I am feeling that we will get the transplant eventually and be out of this world as it exists at the present time for good.
I wonder it anyone has made any sense of any of that. I have been vague as it is all about an overview and perceptions than anything specific. I know my blog is read by other parents of children who spend time in hospital and by adults and young people who have spent a lot of time in hospital themselves. Does any of this ring any bells? What kind of communities have you experienced? How does our behaviour change when we become institutionalised? On a wider level, I wonder what has made things so different now than they were when we were here with folk like Riley. Have the situations changed, is it just as simple as personalities, have we as humans changed over the last three years or is it just me and my perceptions??
As William has this nasty little bug, we are in strict isolation. There were no cubicles on our usual ward so we are next door. At first, I was very unhappy about this. Here, I am going to get a bit controversial and I would be really interested to hear if anyone else has had similar experiences in hospital and, indeed, if and how things are different among other groups of patients in other hospitals. When we first arrived as a 'gastro family' in our hospital we entered a very strange world of parents and children who lived for months, even years, in hospital or in and out of hospital. At that time, this was a very supportive set of people. We were like a family. Readers that have been with me from the start will know all about the beautiful Riley and his wonderful parents, Helen and Adam. We shared a double bay and we were like flat mates. Riley died and we were all devestated. He was one of six gastro children who passed away that year and everyone was looking out for each other. We were worried for each other when the children were sick and happy for each other when things went well. Things are very different now. There are a lot of families who have been around for a very long time living in an institution. There is a kind of hierarchy now - almost a 'top dog'. This is a bit fluid and can alter a bit depending on who is in. We are not so supportive of each other and there is almost an element of 'competitive parent syndrome' going on among some of the parents. If we were in school, certain children would be the best. Here, they are the sickest. Perhaps because the sickest child is the best patient and that is the most important measure in this strange and un-natural community we are in. It is only too easy to get sucked in and join in. I have never liked this but now I feel even less a part of it all. I was feeling a bit alienated but my precious week of 'normality' when all my children were at school and I could come home and work, clean the house and get a hair cut has woken me up again to what life should be about. I am so glad I went to the first session of my journalism course rather than staying here on Wednesday as that was a turning point - I chose keeping my grip on the real world over getting pulled back into the things that matter in this world. At first, when we were moved to a new ward where William know no-one at a time when he was feeling unwell and I was worried about him did upset me. I felt that it reflected our standing in this wierd hierarchy. However, we settled here quickly and I am now enjoying the break from 'parent politics'. It is a lot easier to keep my head down and get some work done in the evenings and I have found myself much less frustrated by things. That is not to say that I don't like it on our usual ward, far from it. That is our second home and I miss the staff. They are only next door though and I have still been able to chat things over with those who know Wills the best. It is nice to meet new people too. When we first got here, I was begging them to find a way to get us back to our usual ward. Now, I am easy either way. There are good and bad things about both. I have reflected and learned a lot from the break from the norm and am armed with new strategies to enable me to keep being the me I am at home and not to become institutionalised. I think a lot of this has to do with the optimism I am feeling that we will get the transplant eventually and be out of this world as it exists at the present time for good.
I wonder it anyone has made any sense of any of that. I have been vague as it is all about an overview and perceptions than anything specific. I know my blog is read by other parents of children who spend time in hospital and by adults and young people who have spent a lot of time in hospital themselves. Does any of this ring any bells? What kind of communities have you experienced? How does our behaviour change when we become institutionalised? On a wider level, I wonder what has made things so different now than they were when we were here with folk like Riley. Have the situations changed, is it just as simple as personalities, have we as humans changed over the last three years or is it just me and my perceptions??