Tag Archives: meningitis

Depression, black dogs and other animals

Before I went away in holiday I wrote a post about how I was going to take a bit of a blogging break. My plans to get posts written in advance and scheduled failed due to lack of time and too many commitments and I hadn’t planned to invite guest posts. But I was going to write a weekly Good News Friday update, keep up with my Play Agenda posts. I promised you. I promised myself.

None of that happened. None, I tell you!

Instead of the class hamster, the blog turned into an itch I couldn’t stop scratching. I clearly need it much more than I am able to admit to myself and I used it to work through some of the things that happened while we were away: the stares, the tensions in Boo Land. The tensions got a bit much, though, and when I sat down to write the first Good News Friday I just cried. So I abandoned that (and the next post) when the fabulous Orli from Just Breathe offered a guest post that put my holiday blues into perspective and gave me a good laugh.

It would all be alright when I got home, I thought. I’d get my equilibrium back and my blogging mojo. I would write up two weeks’ worth of Good News Friday, get up to date, get posts done for linkys and sort my life out.

Have you realised yet that my favourite hobby is setting myself unrealistic goals?

Instead, I hit a metaphorical brick wall. The day before we left Devon I felt as if oxygen was leaving the room. The air felt heavy as heavy as my heart. I didn’t want to stay on holiday forever. I missed lots of things about being at home. But I didn’t miss lots of things about my life. The ongoing battle to get the top of the Social Services and Health OT lists to get seating for Boo and hope he doesn’t develop scoliosis. The anxious wait for his diagnosis (two months and counting since the tests). The endless therapies. The juggling…The exhaustion…

Depression and his old pal anxiety, They taunted me with their predictability. Laughed in my face as they watched me inwardly crumble. I barely remember the journey home and I spent most of the weekend feeling like I was suffocating. I couldn’t write. I couldn’t think.

Winston Churchill famously referred to the bouts of depression he lived with as a black dog. I get the metaphor (the darkness, the constant perching at your heels), but it doesn’t feel right for me. I guess it’s partly because I like dogs so much, black white or any colour you fancy. I find their companionship consolatory.

Maybe I’ve just spent too much time in Devonshire pubs, but I think of my depression more as the Exmoor Beast. Dark and predatory.

What depression looks like

Or maybe, more like the hound of the Baskervilles. You know. You’re walking home one night in the countryside minding your own business and then find yourself walking through the Grimpen Mire when a ferocious dark beast with a green tinge comes out of nowhere and tries to eat you. No: that’s not right either. Sherlock Holmes can’t rescue me. And the hound is only part real, part phantom (a dog someone has starved and painted to look like a spectre).

My depression is not a phantom. It’s very real. And while it feels slightly odd to say so, it’s not man-made. To my mind, it’s a perfectly natural response to 18 months of stress, of prematurity, meningitis, of wondering if your baby is going to die, of repeated hospitalisations, of epilepsy, of brain damage and cerebral palsy, of fighting your child’s corner, of struggling to get the right care, of only 15 nights of unbroken 6 hours sleep in 18 months. Yes: I am counting.

Actually, I’m not sure I have the right metaphor for my depression. I’m not even wholly sure what my particular mental health issues are (depression – yes – but PTSD has been mooted several times and I check most of the boxes, and anxiety is certainly a huge part of it). More to the point, though, I don’t know if I need a metaphor. I understand my depression and part of me really doesn’t want to anthropomorphize it. It really isn’t like an animal or a beast. It’s more like an element: a hurricane, a tidal wave or stormy sky.

And like the weather, things change and clear just when you think they never will. I don’t know how I got through this weekend. I don’t remember unpacking or doing five loads of laundry or doing Boo’s physio, although I know all of these things happened. And then it was Monday and I started working on my massive to do lists and all of a sudden, I felt OK again. I wasn’t paralysed any more. I started to get on with things. I felt better.

I don’t know what changed. I don’t think it was anything I did or any of the pep talks I gave myself, I just felt better. And now I am writing this post and getting on with the work I need to do and inching closer to seating solutions for Boo and getting on with our life.

And although life is hard I can see its beauty. Even when the clouds are dark as anything, I can still see that.

 

Good News Friday #7

I love Fridays. The weekend is a just a hair’s breadth away and I don’t have to work, so I get to spend the day with Mr Boo and to take Sissyboo to dance classes after school (although I could do without the burgeoning One Direction obsession). And we have Portage therapy in the mornings, which is fun. But increasingly as important as many of these things, is the fact that on Friday I get to take stock and write about the good things in our week and, hopefully read any good news you lovely folks care to share via the comments section.

So here’s mine…

Physio: I wrote about the unexpectedly terrific physio session Mr Boo had on Monday earlier in the week, so I won’t repeat myself except to say that it’s kept me smiling through a week that has seen me work until 11 pm twice to catch up with myself. Boo, don’t ever stop amazing me, OK?

Mr Boo went to hospital but wasn’t admitted: There’s no use pretending Saturday was a good day. It really wasn’t. Mr Boo decided to get a non-blanching rash on his leg during a weekend I was solo parenting while his Dad was away with work. Managing my anxiety and his poor sister’s was not fun, nor was watching him scream through blood tests. (‘Stop hurting my brother’, Sissyboo quite reasonably ordered the doctor.)  We had to wait hours for the results and ‘I spy’ got pretty tedious after 10 minutes. But the good news is he doesn’t meningitis again. Even Mr Boo couldn’t be that unlucky (surely?). Nor does he have leukaemia or any of the other horrible things they warned us of. They concluded it was probably a virus. I still think a reaction to the MMR vaccine he had last week is likelier. But really. Who cares? He’s fine and the rash has gone.

Finally, I had a fabulous day last Friday meeting two new friends. I would tell you that they are two amazing ladies, but since we had a conversation about how funny we find it when people say we’re amazing for just fumbling through the world of chaos we’ve been plunged into, I won’t. But I will say, because it is so true, that their little boys are fabulous. Two boys, both with very different birth stories, both with cerebral palsy, a little bit older than Mr Boo. I have chatted online in forums, the blog and on Twitter to parents of kids with CP. But meeting these lovely, determined and funny women (some of our dreams and hopes may have flown out the window, but our sense of humour has not) was a wonderful experience. For once, I didn’t have to worry what others might say or think when they saw Mr Boo or I talked about his challenges. We could just talk. Like normal people. Even if our lives might not seem normal to anyone else. This is our reality. It can be harsh and deeply depressing, but it also joyful and sometimes hilarious, even in its harsher and more depressing moments. I’m so glad to have met them.

OK. Over to you. I hope you might share some of your good news in the comments below. But as always, my main hope is that has been some good news in what in every other sense, has been a very bad news week.

World Meningitis Day 2013

Today is World Meningitis Day. I found out, like I find out about most things these days, from Twitter, where I found a link to a moving post on Looking for Blue Sky. I couldn’t let the day pass without comment.

You see, Mr Boo’s health problems are only tangentially related to his premature birth at 29 weeks. He was born, so far as a baby born 11 weeks early can be, strong and healthy. And then at 3 days he contracted an infection and nearly died. You can read more about this horrible time here.

We still don’t know for certain that it was meningitis because the sample taken was contaminated, but we were told it was 99.9 per cent likely. That’s good enough for me.

We are lucky. Mr Boo survived, but not unscathed. Before he responded to treatment he suffered a bilateral IVH (brain bleed), which developed into PVL (death of white matter) and means he very likely has CP (cerebral palsy). He also has IS (infantile spasms, a form of epilepsy) caused by the damage. I live in a world of acronyms now.

We couldn’t have prevented Mr Boo’s meningitis. He couldn’t have been diagnosed or treated more quickly. But you might be able to spot meningitis in your child before the disease takes hold.

Please, please, please familiarise yourself with the symptoms of meningitis and trust your instincts if you are worried about a sick child. This is one of the many lessons I have learned since having Mr Boo.

Please look at the Menigitis UK website today and pass the link onto your friends. There’s lots of good information there and a helpful diagnostic video, too.

I am not writing this because someone asked me to. I am writing this beause we live with the consequences of menigitis daily. And I don’t want you to.

A Tale of Two Nicus: Part I

OK, so where was I before I got distracted? Oh yes: in the NICU.

How could I forget? It’s not like I’ve really left there. I can still hear the bings, bongs and high-pitched screams of the monitors when I close my eyes, see the waves of respiratory rate ebb and flow, and most of all, I can smell it, that simultaneously hygienic and nauseating smell of hand soap. I sometimes wonder if I’ll ever leave that place or more accurately those places. For ours is a tale of two NICUs.

Seeing Mr Boo for the first time was amazing. He was small (although at 3lbs 11oz at 29 weeks, not that small), but he was perfect in my eyes. I was elated and couldn’t believe how I’d spent much of the night before worrying I wouldn’t bond with him or that it couldn’t be possible to love him as much as his big sister.

I saw him and I adored him. Then I looked again and the love was polluted by a fear so intense it hurt. Both the love and the fear have only deepened since.

I honestly don’t think I saw the CPAP tube, the wires (so many wires) and cannulas that were helping to keep him alive when I first looked at him. I initially thought the woolly hat he was wearing was cute (it kind of was) until I saw it wasn’t designed to be aesthetically pleasing. The hat was keeping the breathing apparatus attached; there was a flap so they could scan his head. Little did I know how those scans were going to change our lives. He had no eyelashes and his body was covered in fine hair. And then I saw his skin and with horror realised I could almost see through it, or at least through those bits that weren’t black with bruising.

The lovely unit sister who I’d first met in the delivery suite the day before talked me through the various monitors and told me not to panic when the alarms went off. I couldn’t believe how something so unnatural and terrifying could be so normal to anyone, why alarms didn’t cause people to start determinedly running like in ER. (I later realised they sometimes did.) Then a consultant came over and explained that Mr Boo could participate in a trial treatment for preventing NEC. It was the first of many acronyms (CLD, PVL, IVH …) that I would have to get up to speed with during the crash course in neonatal physiology every NICU parent is put on. Crash course is right. Reality hit and my air bag wasn’t going off.

Everyone had told me Mr Boo was a marvel. He had no obvious health problems and despite arriving too quickly for steroids he’d got off the ventilator within 24 hours and was breathing with CPAP. He’d even managed several hours in air. And he was an unfeasible size for a 29-weeker. He was strong. But I now realised that he was also terribly vulnerable. He could succumb to NEC or any number of problems I was now googling between this day and that as-yet-unknown day, hopefully some time in the next 11 weeks, when he could come home.

I was shown around the NICU and tried to take it all in: the layout of the unit (milk kitchen, expressing room, family room), the rules on hand washing and visiting. I didn’t remember a thing. I went back to my private room and felt liked I’d been beaten up. (Why couldn’t I cry? Surely I was supposed to be crying.) Then a nurse came in with an expressing machine and I found out what I really needed to be doing. I was amazed that any colostrum emerged and was pitifully embarrassed by the 10mls produced after 20 minutes of pumping. But I’d read the Bliss leaflet and understood the benefits for Mr Boo and it made me feel good. There was something I could do for him after all. But it made me think about and miss Sissyboo too. The last time I’d used an expressing machine I was pumping in the vain hope of trying to get through the excruciating pain of thrush and breastfeed her beyond six weeks of age. I failed. I still felt guilty about putting her onto formula so young (why?) and even more guilty that I’d let her down again now by not carrying Mr Boo to term. By giving birth 65 miles from home.

And then she arrived with The Grumposaur and I was happy, wonderfully happy for the few minutes before I realised I needed to be in two places at once. I couldn’t be the mum I wanted to be to both of them. Not now. Not with Mr Boo in hospital in one county and Sissyboo at home in another. As I write this, they are asleep in the same house, just yards from one another, but I still feel the same sense of disappointment and suffocating regret that I can’t be there for both of them all the time in the way I’d like to be. I never (and I mean NEVER) feel like I do enough for Mr Boo to help his development no matter how many hours I spend in appointments or doing physio with him. So why do I feel I let Sissyboo down every (and I mean EVERY) day by not paying more attention to her needs and wants? By putting Mr Boo’s health first too often.

I had to make a decision. Go home to be with Sissyboo and The Grumposaur or stay to be with my baby. The Grumposaur thought it was a no-brainer. They needed me (they did and I needed them); Mr Boo needed doctors. The only thing I could do for him was to express and a quick trip to Tesco would mean I could do that anywhere. The nurses thought I should stay. They said I underestimated the physical and emotional effects of the last 24 hours at my peril. The Grumposaur asked if there was any medical reason why I couldn’t go home. I had nearly had to have a transfusion and I secretly hoped that this would mean that they would say I couldn’t leave, so I wouldn’t have to make the decision. But they said my iron levels were OK so it was up to me. I went home. There was no right or wrong thing to do. There wouldn’t be ever again, I thought.

So instead of commuting to work, I commuted every day for two hours to a hospital to see my son. My sister, who coincidentally had two weeks holiday at the time, moved in and helped us. She came with me to see Mr Boo after dropping Sissyboo at nursery the next day and she was amazed by how well he was doing. I was taught how to do cares (wash, change and touch a baby in an incubator without dusturbing the wires or upsetting them when they were too young to want physical contact). It was just about bearable as far as anything so unnatural could be. I couldn’t remember that I wasn’t still pregnant, though, and turned down offers of cups of coffee and a medicinal Guinness because I didn’t want to harm the baby in my womb. I felt slightly mad. But it was bearable.

And then it wasn’t any more. On day 3 I was looking forward to cuddling Mr Boo for the first time. Instead, everyone had stopped smiling. We were told he had an infection and his infection count was dangerously high. He had to be reintubated. He was unable to accept feeds and was losing weight. A long line to deliver TPN (artificial nutrition) had to be inserted in his leg. He wasn’t responding to antibiotics. They needed to do a lumbar puncture. They wanted another brain scan, although the first had been normal.

He was very ill. You would think there wouldn’t be much difference between a relatively healthy and an unwell prem baby of Mr Boo’s gestation. They just lie there, after all. But it was palpable just how sick he was and for the first time since this nightmare began I truly understood that he could die. I hadn’t allowed myself to think this before. Why hadn’t it occurred to me?

It was Easter weekend and we tried to coordinate hospital visits with fun trips out with Sissyboo. Wherever I was I felt that I should be somewhere else. And then the bottom fell out of our world.

The sensitivity test came back. The sample had been contaminated so they couldn’t be certain, but it was likely he had contracted meningitis. He needed a platelet transfusion and was now being given a high dose of targeted antibiotics. It didn’t necessarily mean anything for Mr Boo’s long-term future, we were told. (How many times have we been told that in different situations since?) As a prem baby he would be followed up carefully anyway, so the problems the meningitis might cause would be picked up. But there was more bad news. He’d had a bilateral brain bleed. Hopefully it would resolve. If not, it could mean brain damage, developmental delay, cognitive and physical disabilites or cerebral palsy. We just had to wait and see. (How many times have we heard that since?)

I cannot describe the agony and desperation I experienced. I felt even more helpless than I had at any point since his birth. He nearly died. I left the NICU each day not knowing if he’d still be alive when I went back the next. But then, as quickly as he succumbed to the infection, he picked up. Within days of having targeted antibiotics his infection count was plummeting. He looked better. He was starting to tolerate minute quantities of milk. The long line in his leg might be coming out soon. He was back on CPAP. They might be able to transfer him to a hospital nearer home.

I got to cuddle him. Finally. The day I never thought would come. The combination of excitement and fear was dizzying. What if I disrupted a wire or tube? What if he didn’t want to be held? What if the alarms went off? They didn’t. He was fine. It felt wonderful. Sissyboo held his hand.

In the relay of the relatives, my sister passed the baton on to my mum who came to stay for a week while The Grumposaur went away with work for 7 days. It was supposed to be the last trip he made before I started maternity leave two months later. I know he didn’t want to go. I know he hadn’t wanted to work and leave me to drive down to the NICU to see Mr Boo on my own as he had so many days since the birth. I know self-employed people don’t get compassionate or parental leave. I know it makes me awful, but I couldn’t help feeling resentful. I still do. Thank God Mr Boo was getting better. I couldn’t have coped at all if he hadn’t been.

I started to forget about the brain bleeds. I focused on Mr Boo’s improvement and having cuddles with my boy. Two weeks after he was born things were looking up. On the day he started a cycle of 6 hours of CPAP and 6 hours in air I got home from the NICU feeling more positive than I had done for what felt like months. And then I got a phone call from the unit. He’d been a good boy, they said. (They always said that.) I wasn’t to worry. In fact he was so good they were going to transfer him to my local hospital 10 minutes away. An incubator was waiting for him in intensive care.

The transfer team was already on the way to get him. I couldn’t get back to the hospital in time to see him leave but they’d phone me when he was on his way. I felt sick, especially when they said they’d transfer him in air. I wanted to see him. I wanted to say goodbye to a bunch of people who had shown me more kindness than I knew existed. Mr Boo may have been ready to transfer, but I wasn’t. I phoned The Grumposaur and he was thrilled. This was a good thing. I agreed.

So why couldn’t I stop crying……?