Friday 30 October 2015

Hips don't lie (straight)

I have to confess I've had a dip recently, a period during which the positives have been that little bit harder to find. The unrelenting assault on Mojo's respiratory system has made me angry and it seems as if the smell of vanilla vomit is on everything I touch. Then there's our latest curve ball.

Our most recent hospital visit was routine. There is something comforting about the word routine that means that when you receive unexpected news it feels somehow worse. On this occasion it was a routine orthopaedic clinic. Mojo sees the orthopaedic surgery team because of her hip. Its one of those things that I've previously not given a lot of thought to because on the long list of things I should worry about its always been quite far down. Mojo's slightly misaligned right hip has never caused her any pain and the 'windswept' look it gives her body (which essentially means that she kinks left at the hips and her legs both appear to lean to the left) has never been anything other than a physio consideration that one of her legs is slightly longer than the other. Given that she was able to stand supported by a frame or gaiters and there is no reasonable expectation that she will ever walk I've dismissed this as the clinic least likely to present major problems. As it transpires, I was wrong.

To set the scene a little, because I thought this would be a quick nothing to report type clinic I had not worried too much about the fact that Mojo was not at her best. She was having a bad day for both congestion and vomiting and, whilst not unusal, meant that she was not in the mood for doctors.  Additionally, baby Ce who is dragged along to all these clinics was also tired and teething. As we went into the room there were far more people there than usual. Some of whom I had been expecting, some I had not. There were about eight of us in total (not including the children). After a brief intro to who was who in the room, which I did not hear in full as Mojo had started to scream, we began. The meeting started with a standard how are things, how have you been, what have you observed in her movements etc. All of this was conducted to a chorus of screaming and crying from both girls. Mojo, as she knew that an examination was coming, Ce, because she was, well, 13 months old and just having a scream.

An examination followed where the surgeon tried to feel how well the muscles and joints are working and stretching. Imagine if you will a child with already very high tone (very stiff muscles) in a savage rage, clenching every inch of her body and screaming as though she were being tortured and you have some indication of how accurate this assessment of her hip was. Meantime over the other side of the room Ce is throwing toys and screaming for Mama.

The last five minutes of the meeting are a bit of a blur as post examination the consultant says something along the lines of  'I have to tell you I am worried about her hip, I think it's shifting further out of the socket and I think surgery is likely at this stage' *Mojo is pulling my hair and screaming in my ear* 'We need another x-ray but I want you to know that I think it will show that it has worsened' There is a brief discussion above my head about whether an accurate x ray could be taken today. The lovely Physios argue that it couldn't be expected to be accurate given her level of distress and we are dismissed until such a time as an x-ray can be done.

I feel like this meeting has happened around me rather than with me. So many opinions and so much information, all the while all I wanted to do is get them all to shut up for just a minute so I can comfort my babies and actually engage with and contribute to the conversation around me. There is no time for that.

As we are about to leave I'm aware that within minutes of leaving the room and calming the girls I am going to re-focus and want to know significantly more information than I have been provided with. I go over to the computer where the consultant is now entering notes and over the volume of screaming and sub-conversations going on, ask her what exactly the surgery involves, what would it do. She briefly tells me that they will saw sections from both Mojo's thigh bones and reposition both her hips and she will be in a waist to ankle body cast for a few months but don't worry for now, we will see you again once we have the latest x-ray, bye. We are swept out of the room, I have Mojo and a pile of coats in one arm and the buggy on the other. The screaming continues only this time I want to join in.

As the fresh air hits me outside I feel confused and shocked and overwhelmingly sad. This was not in the plan, where did this come from? More surgery, a body cast!! How much pain will she be in? For how long? How will we operate? How will we get her in and out of the car? Will she be able to go to school? How will toileting work? Mostly I just feel angry at the way the whole clinic was managed! I shouldn't be leaving with so many unanswered questions.

So we are currently waiting for the next X-ray. In the meantime I've investigated alternatives (more Botox, different medicines, intensive Physio) and I once again feel in control of how this will pan out.

Mojo of course, throughout all this is far less concerned than I am. She is going through a phase where everything is funny. Baby Ce nearly fell off the sofa last week and I got very high pitched trying to get her to stop. Mojo belly laughed for a full five minutes which set Daddy off laughing which set baby off laughing until we're all falling about laughing and before you know it nothing feels quite so bad.

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