Mama LewisAND THE AMAZING ADVENTURES OF THE HALF-BRAINED BABY

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May's first photo post-surgery

Praise here to all parents who lovingly pack a bag for their child, knowing they will be cut open the following day. As an emotional experience, May’s surgery was a complete disaster. There is no getting around that. When we entered the recovery room post-surgery, a child was rasping with the force of his own screams. It wasn’t a boy, it was my daughter. I didn’t recognize her.

But, it was also a major success. Performed by a surgeon whose specialism was not just orthopedic surgery, but orthopedic pediatric neurodisability surgery – a week later my daughter is already kicking her legs with happiness. And while those first couple of days were almost completely unbearable to witness as a parent, I never had the sense that anyone didn’t have May’s best interests at heart at every moment. They solved her pain issues as swiftly as possible, and their conviction and compassion reassured me.

The children’s hospital was a wonderful place. The nurses were outstanding. The food was edible. Even the building was inspiring.

My worries were entirely about my daughter. Never, not for a single moment did I ponder: can I afford this? Will my insurance cover this? May received the highest level of expertise from her surgery to her recovery. The pressure of expense was never an issue.

Throughout the week, I remembered another terrifying hospital stay – at a very similar and reputable children’s hospital in Detroit – an ambulance journey, MRI and one overnight stay ended with a bill of over $20,000 (covered by my British travel insurance.) The hospital room was almost identical to British ones I’ve stayed in, even down to the make of the medical equipment. We shared the room with one family, a grandmother watching over her four-year old grandson. In the morning, when I awoke, I asked my husband where they had gone.

“They left,” he said. “Their insurance ran out.”

I hated taking my daughter in for surgery this week. But, I never doubted that she would receive excellent care. I do not write this to disparage hospital treatment in America, which I believe is also excellent. But, terrible things are said of socialized medicine. In honor of the care they gave and continue to give my daughter, I want to publicly thank the British National Health Service.

This post was originally on the BabyCenter Blog and you can read it in full here: Why I’m grateful for socialized medicine. 

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May was meant to be discharged yesterday. But, complications with her recovery – an infection, need for a blood transfusion and particularly her pain level – has pushed the discharge to Monday now. I only held her for the first time today, and that lasted ten minutes.

Sharing a hospital bay with a loved one in no way resembles the hospital pantomimes played out on televisions every night. Unfortunately – using ER and episodes of Casualty as my guide – I have seen zero: doctors doing it in cupboards, people stealing drugs, fights/shootings, comedy clowns allergic to face paint…

Here’s what has happened: I waited around, watched helpless while May writhed in pain, waited for drugs, waited for doctor to show up, discussed going home but didn’t actually go home, waited some more and then waited around for the paperwork to arrive so I could wait. Also, George Clooney never showed up to check May’s vitals which was a severe disappointment.

Despite this, the Evelina Hospital is a wonderful place, if hospitals are allowed such distinctions. The nurses are outstanding. The food is edible. Even the building itself is inspiring.

I’m writing this sat next to May’s bed, where she is peacefully sleeping. We are on the fourth floor. Next to my seat are floor to ceiling windows that open out on to an atrium that begins on the third floor and ends on the sixth. It too has floor to ceiling windows, on the opposite side, providing me with a treetop vista of an expansive park. The atrium is as long as the building itself, has a piano, ping-pong table and playroom, and – in between the important business of waiting – I’ve watched children run up and down it all day. There is a garden balcony that runs the length of the building and opens out from the atrium on the fourth floor. Yesterday, I took a break with my husband and chased our two year old son up and down it outside.

May's room at the Evelina

It is strange that a building itself could bring me some comfort, but it has.

Finally, I haven’t responded individually to all the messages we have received, but they have been read – each one. So, thank you for doing your part, as well, to buoy us up.

(Click below to see further images from this week.)

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I posted a photo of May on Facebook last night, and then took it down. Something about May in a hospital bed slowly working its way down a popular newsfeed made me feel sick. Instead, here is a photo for you, where it can be followed by a lengthy paragraph of gratitude which feels far more appropriate.

May in recovery (note the Minnie Mouse bedding care of Grandma Bar)

If anything, this experience has reinforced my view that May is loved by so many people – more than just her family. We have received more messages than I can respond to personally. But to highlight her family for just a moment – what I feel for my mother (AKA Grandma Bar) and May’s father I can not really put into words. They are the only reason I came out the other side of this with my sanity. That I love them or that I’m thankful, doesn’t cover it.

May is fine. The surgery went well. The recovery has been a glimpse into hell. The photo above is May at her best, playing and responsive. So it is not a true representation of the total experience, but I don’t want to think about her pain for even a second longer than I have to just now. Rest assured May is fine. She is loved. She is as well as she should be right now. The surgery went better than they would have hoped. It was shorter and they had to do less work than expected. And, before I sound too grim, she is more comfortable than she was yesterday, and yesterday she was far better than she was on Monday. We even heard a few giggles today.

Thank you to everyone who has sent good wishes, hopes, thoughts, prayers, etc. It does help to know that there are throngs of people out there rooting for my little girl to pull through all of this.

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Strange isn’t it – how some moments are so significant that even the most unassuming of locations – a street corner, pushing Ieuan in a stroller – sear in brilliant detail on your memory. It was at a street crossing that I received the test results, six months late, about May’s hip displacement. The crosswalk light blinked. The sharp alert to cross. The phone pressed awkwardly between my shoulder and ear. I shouted because I couldn’t hear what she was saying.

I can remember all that. But, ask me where my car keys are located right now. Ask me. I dare you.

That was the first moment I thought that May’s hips were so far gone there was probably no hope for them. Take a look at theses shoes, I said here on this blog, because you may never see them again.

It was one of those moments when I realized that May’s NHS physiotherapy up until that point had been worse than I had thought, leaning towards negligence. It was also one of those moments when I wondered, and still do, about the point of physiotherapy? Even if her physiotherapist had done stretches with her (which she didn’t – I had to beg her to touch May just to test her flexibility) could we have stopped her hip displacement? How can I not wonder, when the end result is May on an operating table tomorrow for six hours. There is a cruel inevitability about the whole thing.

Maybe, just maybe – this hip problem is the reason May has been in so much discomfort recently. And – after the surgery, when she is recovered – maybe, just maybe it will be a bouncebouncebounce marathon.

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Today we took May to the park. Thankfully, given London weather, it was clear skies and warm breezes all day. Click on the photos to see in full.

See you post-op and thank you for all the good wishes!

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My son is a Vomit Monster. On our trip to Wales this week for one last visit with Nana before THE SURGERY, Ieuan turned into Godzilla. That is, if Godzilla demolished Tokyo by puking.

Click on the photo to enlarge and see the Vomit Monster stalking his prey

I’ve turned it into a poem:

Puke
On the way to Wales
Puke
Coming home from Wales
Puke
On the car seat
Puke
On the front seat
Puke
On the car seat again just to be thorough

I’ll tell you what I tell my students when I produce something beautiful – like this poem – for them in lessons: “If you don’t get it, that means you don’t appreciate art.”

I’m masking what has been one of the worst periods of May’s life, with humor. She is in a lot of pain. She takes pain medicine four or five times a day. The reason we stopped all those times that Ieuan puked, was not because he puked but because she was screaming in pain for the much of the journey. We stopped because we had to take her out of her car seat and wrap our arms around her. The puking was just a bonus.

But, in between all the puking and the screaming, a doctor asked me for May’s weight over the phone. To explain, I’d been trying to get a hold of her to get a pain prescription for May for a week. (Yes. A week. And I called her, not the other way around.) She had two minutes, so she battered me with questions and promised to call me later – which she did.

The only way I could think to figure May’s weight in the 30 seconds the doctor gave me was to weigh myself and subtract my weight from hers. I haven’t weighed myself in a year and a half, and even then it was in kilograms that I didn’t convert into pounds, because who wants to know how much they weigh? How about: no one.

In any case, you all weigh yourselves, but I don’t and so I haven’t known my weight for four or five years at least. Because who wants to know how much they weigh? Not me.

Turns out, I’ve lost weight! I weigh the same as I did a decade ago. I’m not sure if that is the depression diet or genuine good health, but I’ll take it.

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