Saturday, October 04, 2008

A Fine Line

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 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??


helen said...

So funny reading this! I was talking about this last night with my friend..

But not as part of the 'my child is the sickliest' syndrome but the 'my grief is worst than yours' syndrome....

I was scanning some groups a friend of mine had joined regarding losing people, mainly was horrible, people clinging onto the fact that they'd uploaded a picture onto facebook, thinking it'd help others when really....they were all screaming 'ME ME ME'.....!

Back to your original point.....the only people that suffer from the 'My child is the sickest' syndrome are those who's child is only 'in'(slang for addmitted to hospital, a word normally only used by those who have experience lengthy bouts of hospital stays!!) for a few nights. Its like their world has come to an end....they're missing eastenders, unable to juggle all 'normal' duties as a parent/wife with the joys of a hospital in order to get people to truely understand how horrendous this ordeal is, they like to brag about how little 'Olivia' is so ill, how the nurses have practically told them she is the sickest child they've seen in their careers, how she needs one to one care for the duration of her stay......


I feel your pain Sarah!!!

suzie said...

Hiya Sarah,

I really enjoyed reading that entry tonight because I identified with a lot of the things you said. I always steered clear of the 'lets talk about who is the most poorly' get togethers, not purposely though, I just always had other things to do that kept me busy and maintained a balance.

Thats a very short reply and I could go on and on, but I'd probably drift so I'll say nite.

Much love.

Sarah Milne said...

Hi Helen,
So great to hear from you :-) The wierd community is really among the gastro Mums at the moment. I think there was a lot more 'turn around' back in the day (she say's smoking a pipe ;-) ) There were tragedies, some children got better, two had their transplants so we weren't all living in here or in and out of here in this strange little bubble for so long. Some of us have kept in touch in 'the real world - or on Facebook' but we didn't have to coexist so long in here for so long. We supported each other, where as these days people seem to need to fight their corner more and I am not guilt free on this one but, having taken a step back to see it, will try not to do this anymore. The vacuum makes you feel the need to get frustrated and mad over things that, quite frankly, don't matter in the grand scheme of things!

Sarah Milne said...

Hi Suzie,
I was posting at the same time as you! Thanks for commenting. I don't feel like I am the only one that experiences things like this now - that is something of a relief. xx

Chickpee said...


Just read the last post and it did make complete sense. I can relate to the pecking order and like helen said it tends to be the newbie's who make the most fuss as i suppose the rest of us have been in the system so long it is the "norm"

I think this definetly happens more so in the pead's setting as you have the parents of the kids who are newly diagnosed causing the fuss (one of my son's gene's is so rare he is one in 200 million etc, and sadly oh my daughter is in again with double pneumonia, like it is a badge of honor) and the parent of the older kids who i suppose humor them as they are beyond caring about the why and how there child is ill and more focus on getting them better and about everyday life and getting things back to normal again, knowing the next admission is never too far away. The sad reality of life with cf and so many other conditions

I moved to the adult unit about a year ago and everyone seems more relaxed and the only competition i have came across so far is who can stay out the longest :P

Anonymous said...

It isn't just people in hospital, the "my child is sickest" or "I am sickest" thing goes on in all sorts of medical communities on wards, in person and online.

Anonymous said...

I read your blog and follow your story. I personally have a chronic illness and live in flats where everyone is unwell and i find i have to hide myself away as i can't handle the competiotion. I want to stay well the longest and out of hospital the longest and say this but i get pushed out of the community and my friends as i am having a 'well' week. It makes it tough to say how well i am doing and makes me more isolated, but i don't care, i am going to stand on the roof and shout 'i have been out of hospital a week and am doing well' yay