On not reading

However hard it is to leave your kid screaming at nursery, it is a whole different level of difficult to leave him slumped and silent under a general anaesthetic, to help carry him in his tiny gown to the operating table, and then be ushered out of the room by a host of scrubbed up surgeons. What can you do for those impossibly long two and a half hours? You can barely read a twitter feed, certainly not a book. I spent most of it sitting beside his empty ward bed, with my eyes closed, counting my breaths.

I’m so glad to say that Ezra is getting better. In fact, I have just left him for a couple of hours at nursery (they were instructed to phone me if the initial scream lasted more than two minutes!). But he has been very unwell. And we have all been through the hell of it.

This is a books blog, rather than a blog about my family, but I would like to write about this experience, and I’ve not been reading much of late. For those of you who want books, then please turn to my feature – about private libraries – for the Financial Times Weekend here. For those of you who can stomach a bit more about what’s been going on, then read on.

The problem with raising a toddler is that there is almost always an excuse for something being up – teeth, a developmental surge, a reaction to the MMR vaccine, separation anxiety, a virus picked up at nursery …

Ezra is now fifteen months old, and started nursery in January. I remember when Vita began nursery, she picked up something slightly grim pretty much every week, so I didn’t think much of Ezra being in a bad mood for a couple of weeks. And then there was the MMR jab, and then there were three molars coming through, and then … and then I began to think hang on a minute, perhaps there is something else wrong. The thing is, he was confidently walking when he turned one, but stopped after getting a nursery bug, and didn’t start again. After 3- 4 weeks, I noticed that he had practically stopped crawling, and just wanted to sit on my lap. He didn’t seem too happy standing either, and would slump over the table or whatever it was he was holding on to.

He’s fine, said the GP. It’s just that his confidence has been knocked, since getting that virus a couple of weeks’ ago, and he is getting used to being separate from you. Send him back to nursery, you are being a very good role model to him by working, don’t feel bad about it.

We were going through a week where whenever we got Ezra up from a sleep he screamed, inconsolably, for about 45 minutes. The next day I picked him up from nursery and they told me he had cried pretty much all day. Although he was crying a lot with me too, I thought that if he really was missing me quite that much, I would take a few days off work and see if that helped.

Then next morning I took him to see a health visitor. They jotted his weight down in his red book and didn’t tell me that he weighed less than he did a fortnight ago. I explained the full situation. Take him straight back to nursery, she said, he is a perfectly healthy child. We talked for about twenty minutes. She didn’t think it was strange that he cried when taken off my lap, that he was uninterested in going over to the box of toys, and told me that most people ‘couldn’t afford the luxury of taking time off work’, like me. She said she’d call me in a week to see how I was getting on. I’ve not heard from her.

That was on a Friday. On the Monday I went back to the GP. By this point, Ezra was crying when I left him sitting down, and I noticed that he soon rolled on to his tummy to play. It was a different GP this time, and he paid me more attention. He doesn’t need to go to A&E, he said, there are no acute symptoms, but something does seem to be not quite right. I would like to see a paediatrician, I said. He phoned up the hospital and spoke to one. I got an appointment for that Wednesday.

I turned up to UCH children’s outpatients with everything written down on a postcard, ready to try again to convince a doctor that something was wrong. I am a second-time parent and seriously concerned about him, I began. The doctor looked at me, looked at Ezra, called in another doctor and then said: he needs blood tests now, and an MRI scan today; we’ll admit him.

That afternoon, we sedated Ezra for his MRI, and I sat in the dark beside the machine for the hour and a half he was in it. His ears were triply protected from the strange thudding rhythms of the scan, and he looked like a little space man, so small in that enormous machine. He is so small, I kept thinking. He is too small for this.

That night, Ezra fell asleep in the sling on me, and we were waiting to go on ‘home leave’ till the morning. Some of the blood tests had come back earlier on. The good news is it’s not muscular dystrophy, the doctor had said.

The night shift doctor came in. I’ve had a look at the MRI scan, she said. The good news is his brain looks fine.

I think I can see the problem. Do you want to sit down? she asks. There is a very bright patch on his spine. It looks to me like it could be an infection in a disc between the vertebrae, which might have spread into the vertebrae. This is treatable with a course of antibiotics.

There is a pause while I hear Ezra’s snuffly breaths on my chest and try to process exactly what she has said. I repeat it all back to her. Great, I say. So he just needs some antibiotics.

The doctor explains this would be six weeks of a daily dose of intravenous antibiotics. A serious medical procedure. That is, she said, if it is discitis.

And what if it isn’t?

Well it could be a malignancy. It doesn’t scream cancer to me, but we need the neurosurgeon at Great Ormond Street to look at it, and that won’t be until the morning.

Ezra and I got a cab home, in which I found myself, ridiculously, sending some work emails.

The next morning we were told it was almost certainly not cancer. They wanted Ezra to have a biopsy, partly to be sure, but moreover so that they could see which bacteria was causing the infection so that they could treat it with the right antibiotic. In the meantime, they would treat it blind. Ezra endured the first of five cannulas being fitted, and the first dose of antibiotics was given. This, combined with a constant rotation of calpol and nurofen, meant that by the next morning he was already a little better, clambering around the baby sensory room so much that it was clear a cannula wasn’t going to last long.

We were in and out of UCH for the next few days, and then got a bed at Great Ormond Street on the Sunday, for the biopsy to happen on the Monday morning. They would also insert a PICC line – a very long line that comes out of his arm and goes all the way into his heart. It would mean no more cannulas, and no more painful pricks for blood tests. It was a nil-by-mouth: we could wake him for some milk at 2am, he could have water until 6.30 am and then that nothing. By 10.30 am Ezra had flopped asleep on the husband’s shoulder as we walked round and round the ward.

He’s not going to have it today, a nurse ran up and said. You can give him something to eat.

What? Why? What? Why? When? But…

We will try to find a slot for him later this week.

After kicking up a stink and phoning UCH to get them to kick up a stink, we were scheduled for the next morning. That’s when I left him in the operating room.

That first trip to UCH outpatients was four weeks’ ago today. A nurse has been coming to our home every day to administer the antibiotic – it takes about an hour. She has taught me how to make up all the syringes and give it to him myself, so this week we have started to do it on our own, over breakfast. We have another two weeks to go.

We have weekly hospital appointments. Every time Ezra enters the treatment room – site of those early cannula fittings – he screams and makes a break for the exit. The doctors usually have to see us in the play room instead. They found two bacteria in the disc biopsy, both of which are normally found in the mouth. As it is so rare and weird for this to have happened, they are doing some further investigative tests to see if there is an underlying issue. We are waiting for the results for a complicated blood test that shows if there is something wrong with his immune system. We are back at Great Ormond Street for a heart scan on Friday. I am trying to concentrate on the fact that he is recovering well from the infection.

This weekend, Ezra started walking again.

Last night, I started reading again.

This morning, I started writing this again.

After a terrible time, I hope life is beginning to get back on track.

Here is that FT private libraries feature again.

And here is my tiny Guardian review of Xiaolu Guo’s excellent memoir, Once Upon a Time in the East:

 

Once Upon a Time in the East Guardian

 

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38 Responses to “On not reading”

  1. Amanda Craig Says:

    Oh Emily, what a horrible time you have all been having. So very sorry. Hope Ezra is truly on the mend now.

  2. Rachel Bateman Says:

    Thank you so much for writing this. I’m so sorry for the very difficult time you have all had and wish you all the very best. Having a young child who is unwell is exhausting in all senses of the word, but I cannot imagine how difficult going through such a time as this has been for you all. Thank you again for taking the time to share it.

  3. Caroline McAdam Says:

    Oh Emily!

    I’m so glad that in the midst of all this you were able to take us on our lovely sunny walk last Friday .. and see Ali Smith!

    This is a beautiful piece of writing and made me think of Henry Marsh’s experience with his son in Do No Harm.

    It’s great that Ezra is getting better now.

    Keeping everything crossed..

    Much love

    Caro xx

    >

    • emilybooks Says:

      Thanks Caro – that walking book club and Ali Smith combo was a little ray of heaven in the middle of it all!

  4. Musings from the Marches Says:

    Bless your heart! Prayers and good wishes to you and Ezra. There is NOTHING worse than watching your child suffer. I’m so sorry you had a series of misdiagnoses–or apathetic ones. That, too, is frustrating, when you know there is something seriously wrong and you feel unheard.

  5. Julie Darsley Says:

    Dear Emily

    So sorry to hear about what you are going through with Ezra. You have to wonder what happens to people not so educated or forthright as you are, don’t you? Although I have the greatest respect for GPs and health visitors, they seem to assume that as a young mother you are just being over anxious when you make repeated visits to see them. If anything lasts longer than three weeks for your child and you are ‘fobbed off’ you should ask to see a specialist/seek a second opinion in my view.

    I do hope Ezra is ok and that this is just a blip in his development and he is back on track, thinking of you in the meantime.

    Best wishes

    Julie

    _____________________________________________________________________________________________________________________________________________________

    Julie Darsley

    • emilybooks Says:

      Thank you so much. Yes I did think exactly the same thing both at the GP and at Great Ormond Street about the benefit of making a fuss, and how not everyone would be quite so pushy as me… A lesson in the importance of assertiveness?! Thanks for your good wishes. x

  6. sultanabun Says:

    Christ Almighty
    , what a nightmare. I’ve carried two of my children to theatre so I know the nightmare of it but never for anything so serious. Time now, Mama, to breathe again, and escape into a book.

  7. Carol Gilham Says:

    Dear Emily, this was so hard, but so necessary for you to write and me to read. We had a similar hospital experience with our granddaughter when she was 4 months old. It was hard watching my adult daughter suffer indescribably with her baby on a paediatric oncology ward, her picc line and lumbar puncture both required a GA. And one reason for telling you this is that our granddaughter is now a healthy happy sociable 3 year old, who did not, after all, have cancer. The other reason is to say that our daughter developed PTSD and has very wisely had several periods of counselling as needed. Please do not minimise the effect this will have on you. Be gentle with yourself and seek help quickly if you even suspect you need it. I will be holding you in the light. Carol

    • emilybooks Says:

      Thank you so much Carol, that is so heartening to hear about your granddaughter. And thank you for the advice – I will certainly seek help if needed, the counselling was so brilliant with my Post Natal Depression, so I know what a lifeline it can be. Thank you again x

  8. Liz Says:

    Oh God. I’ve been there 33 years ago. Complete nightmare. But children are amazingly resilient. Be very very good to yourself and your husband and work can bugger off! It can all turn round just as fast as it fell through the floor. Good for you for persisting against indifferent NHS care. Be proud!

    • emilybooks Says:

      I’m so sorry to hear that Liz, but yes, there are wonderfully resilient, aren’t they? I have to say the NHS care was phenomenal at UCH, it was just getting there that was tricky.

  9. Maureen Dreyfus Says:

    Dear Emily,

    Thankyou for the detailed update on your experiences with Ezra. What a terrifying time you, the husband and little Ezra have been through. It sounds as if you are in good hands with Great Ormond Street and I hope the blood tests and scans come back with that magical word “negative”! How is little Vita coping? Stupid of me to ask you questions – I’m sure you have hundreds of emails to respond to.

    Fingers crossed – he sounds a strong little boy and you must be breathing again since you have returned to reading and writing!

    Best wishes,

    Maureen

    • emilybooks Says:

      Thanks Maureen. Little Vita has been great about it – obviously a bit unsettled, but for the most part so helpful and sweet about it all. That is, until we tried to go out one evening and she had a complete meltdown …
      Thanks again for your good wishes,
      Emily

  10. Debbie Rodgers @Exurbanis Says:

    Oh, Emily, I am in tears. What a nightmare you’ve been through. I so hope that tests show that nothing else is wrong and that Ezra continues to respond to the antibiotics for the infection.

    It shouldn’t have been so difficult to get the proper help, but medical personnel are only human and, too often, overworked. You were a wonderful advocate for Ezra, a wonderful mother.

    Hugs and warm wishes.

  11. Nadege Says:

    So very happy to hear that Ezra is doing better. I cannot imagine the stress of having an ill child. May God bless your family as he continues to improve.

    Of course your readers are interested in your life away from books! ❤️

  12. Carole Says:

    Just echoing what everyone else has said. An awful experience and so good that he is now improving.

    Best wishes for your son’s complete recovery.

  13. Tom Kavanagh Says:

    Emily…
    What an awful experience to go through. I hope brave little Ezra is on his way to a full recovery. And that his mama can take some recovery (i.e. reading) time for herself.
    Tom

  14. ramblingmads Says:

    I am so sorry to hear you’ve had such a terrible time. I wish Ezra all the best in the world. It’s terrible being so ill so young, when you can’t fully understand what’s happening. I hope he gets well soon and this fades to a distant memory.

  15. Ben D. Shiriak Says:

    I am so sorry to hear of your travails. I wish you and your family the best.

    Doctors are limited in their expertise and time. Sometimes it is best to have two of every type.

    • emilybooks Says:

      Thanks Ben. We currently seem to be on first name terms with all the paediatricians at UCH, so doing well on that front!

  16. Olga Proctor Says:

    Dear Emily, we are very sorry to hear this about Ezra. We hope he will be on the mend soon and hope you stay strong. Warmest wishes from Olga and Debra (midwives)

    • emilybooks Says:

      Oh Olga and Debra, hello! It is amazing to hear from you. For a baby who had such a lovely home birth thanks to you two, he has spent rather a lot of time in hospital…
      Thank you so much for your good wishes. It is wonderful to watch him getting so much better and happier again.

  17. Susan Tracy Says:

    Oh Emily, I send my love and thoughts. What a nightmare you lived through.
    I am so very glad Ezra is on the mend.
    He sounds a lovely little boy, your pride and joy no doubt.
    See you at the Daunt meeting in April.
    Very best wishes
    Susan

  18. emilybooks Says:

    An update:
    Very relieved to say that the final frightening tests came back normal, so now we are just waiting to finish the long course of antibiotics and then we ought to be in the clear. Thank you so much all of you for your supportive messages.

  19. Verity Ravensdale Says:

    dearest Emily, Nat and Vita, It is wonderful to read that Ezra is recovering. |You are so brave to be writing a lovely, moving piece with a such an entirely absorbing drama going on just there filling every thought. With lots of love and thoughts from Verity

  20. JAR Says:

    Emily, I’m only reading this now after the all-clear update. There is very little in life as terrifying as watching your child ‘go under’. Two of my children had relatively minor ops at a very young age, and the experiences remain very vivid in my memory.
    Wishing your family a lovely spring and summer to come, Jade

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