Posts made in October, 2012

I kicked a doctor off May’s team

Posted on Oct 30, 2012 | 7 comments

I kicked a doctor off May’s team

In an interesting follow-up to yesterday’s post, here is the email I sent to May’s team this week following her annual medical review on Wednesday: Hi everyone, Thank you for meeting with May and I on Wednesday (and a very noisy Ieuan). Thank you, ** for drawing up the care plan. It seems fine to me. I need to make a somewhat awkward request, that I hope you won’t find too uncomfortable to read. I was very uneasy with Dr. **’s professionalism yesterday. I realise her involvement with May is very limited, but I want to formally request that she does not deal with May’s medical issues from this stage forward.Before our meeting, she met me in the car park to see what was holding me up and I explained May had just had a seizure. Of this she did not comment; she did make a point, however, of rushing me along. [Tapping her watch, remarking on her many appointments, insisting I push May on the sidewalk instead of the cobblestone drive that May loves.]* Then, when I stopped again because I thought May was having another seizure, she told me [without investigating] May wasn’t having a seizure, she was just cold and I should hurry up and get her inside. I told her it was far more important to check that May wasn’t having a seizure than to just assume she was cold. I should never have to tell a doctor this. Then, in our meeting, I felt she was dismissive of the team’s advice. [For reflux:] she wanted to investigate putting May on muscle relaxants and pain killers before we’d tried basics like antacids. She also wanted to refer May to a dietician before we’d even checked her weight. [Of which, we discovered afterwards she is gaining.]May’s medical needs are very difficult to diagnose. I am concerned about having someone involved with her care who is quick to judgement and brushes aside your expertise. May I respectfully decline her services in the future? I would like to reiterate that I felt our joint discussions in the meeting were useful and I agreed with the conclusions. I hope you don’t see this as a reflection on the team as a whole. Yours sincerely, Stacie Lewis *All bracketed and italicized points have been added by me here, for your clarification. ____________________ What do you think happened next? How did they react? See my next...

Read More

If you had the chance to lecture 300 doctors, what would you say?

Posted on Oct 28, 2012 | 11 comments

If you had the chance to lecture 300 doctors, what would you say?

This month, I will address a conference of pediatricians in Hull, England. It will be the second time I’ve spoken at a conference, though the first time I was 23 and I delivered a paper on post-colonial literature. I can’t even remember the book I spoke on… so a very memorable speech then. One of my friends is a doctor  – several actually, but this particular one is organizing the conference and she asked me to come speak about May. In other words: she took a big risk on a friend of hers who, she knows, has a big mouth. I’ve spent several months thinking about what I want to say. The opportunity to address a room full of medical professionals is a rare gift. To speak to them outside of an appointment, with no pressure on them to address May’s medical needs. To tell them what I really think: about them, about May, about anything really. That’s big. It’s delicate though. Too critical and they will get defensive, too kind and I’m stroking egos. Neither option sounds at all useful. So, I thought before I close off writing my speech, I’d turn to you readers and ask, if you were in my position: What would you say to a room full of doctors? ____________________ One more thing: Major success! May’s height and weight were measured this week. She is no longer off-the-charts small, literally below the zero percentile in height and weight compared to others her age. There are actually children out there shorter and lighter than her! May’s weight: 11.5 kg / 25.3 lbs May’s height: 90 cm / 35.4...

Read More

Should May use this medieval toileting device?

Posted on Oct 25, 2012 | 17 comments

Should May use this medieval toileting device?

It is not as we had hoped: 1. An attachment to the small toilet adjacent to her room. 2. Conveniently situated in a room, the bathroom preferably, rather than other her bedroom. 3. Compact in any way, or collapsible. 4. Flushable. Is attempting to get May to use the toilet worth dealing with this...

Read More

Be selfish. Put your half-brained baby down!

Posted on Oct 21, 2012 | 5 comments

Be selfish. Put your half-brained baby down!

Life can be very tough with a disabled child. I do several appointments a week, often at hospitals – and these fill my days in a way I would never choose for myself. Parents of disabled children despair at their lack of time, money and love. These three things get set aside in the name of physio and medical assessments and working late into the evening once the kids are in bed. So, I say to you, parents, put your child down! Their life will not benefit from constant pressure towards progress and no fun time playing on their own with their toys. Leave them be, and even let them cry for awhile, if it means your sanity will remain secure. Your kids need that – you to be sane. They need you to go out with your friends and drink wine and share funny stories. They need you to hug your spouse. That’s right. They need the love that comes from two people, if you are lucky enough to have a spouse to share the load. They certainly don’t need the eye rolling and discussions about lists and pouting in the other room. That is not fun. And, so it was that I celebrated my 40th birthday properly. Not rushed in a quick meal down the road. Not rushed with a toast over dinner sitting in front of the television. I took myself and my family and friends and stayed in a palace, Hampton Court Palace, for the weekend. Children pick up on the atmosphere of their parents. May, too. She has a long history of sensing negative situations. I worried that the kids wouldn’t enjoy it, because after all – despite what I said above, I would struggle to put them down if they became distressed. I certainly could not guarantee that May or Ieuan would appreciate the historical significance of Henry the VIII’s palace. But, I hoped they might like the garden attached to the house. And, they did! May delighted at the cobblestone and pebbled paths throughout the palace. She loves the vibrations of her buggy juttering over stones. I could never have predicted that. And, Ieuan loved the house and its many doors and trying to out run us to the grand staircase that was just perfect for climbing. It was baby paradise. More importantly – and it was – we enjoyed it. We deserved it. Selfishness is gooooood. Photos from our weekend adventure: Our home for the weekend The Happy Family Ieuan takes a peek at what his sister is up to. May enjoys smelling the herbs in the Hampton Court...

Read More

May vs The Hosptial, Part 2: The waiting game

Posted on Oct 17, 2012 | 3 comments

May vs The Hosptial, Part 2: The waiting game

A year ago, this week, a solicitor visited us to hear our version of the events leading to May’s brain damage. It was harrowing saying aloud all the moments that continue to torment me. All the more trying because I know it will, most likely, all be for naught. The process is long partially, I think, to put people off doing it. A year on and no further progress? Having to ask and then reask and then ask again when the hospital doesn’t provide all the documentation they should? These are not fun conversations, especially when you know that proving anything will be near impossible even if you get the documentation. Still, two weeks ago, I asked for an update. And, not unexpectedly, there is no update. The experts are still examining the documentation of which there are hundreds, possibly over a thousand, sheets of paper. And yet, strangely, I still have hope that they will uncover something. I walked past a house today, on the way to pick up May from nursery. It had been renovated so that a disabled person could live in it. A modest house, with a ramp leading to wide front doors. Along the sides of the ramp, were new planted flowers. I sighed. How wonderful it would be to know that May’s future was secure and that we had the means to make a house like this, her home for life. The waiting game...

Read More