Part 4 marks the final installment from events which took place last year. If you haven’t read the previous blogs you can find them all here. Have a catch up and then come back to this one!
Saturday August 31st after the flight home I drove back from Stansted airport in a state of disbelief that we were finally back on English ground.
We did the obligatory stop at McDonalds on the way back and all three of us were relieved when we reached our little home. While my children settled themselves in I began the unpacking and working my way through the washing, which I think has to be the worst part of coming home from holiday, no matter how long you’ve been away for.
My daughter was still unwell, and it was my plan to take her to the GP on Monday so that she could be checked over. I’m pretty sure the doctor wasn’t quite prepared for us bowling into his room that Monday afternoon in September as I literally handed him the piles of paperwork which I had collected from the Turkish hospitals and explained what had happened over the last 5 weeks.
He wasn’t happy with the amount of pain that she was still feeling and had his own concerns. He arranged for yet more bloods to be taken and another ultrasound scan to be booked.
However before any of that had time to take place my daughter became more poorly.
It was just 2 days after our GP visit that I was calling the surgery asking for another appointment. My daughter was screaming in pain and looked utterly dreadful. After a few conversations over the phone they decided that because of all that had happened over the last few weeks I should take her straight to A&E.
The journey from my house to our local hospital is around 25 minutes, but I got there in considerably less time! The whole journey my daughter was crying out in agony and I could do little to comfort her as I tried to get us there as quickly as possible. I put her favourite CD of the time on (Alice Jemima, she’s very good, check her out) and did my best to soothe her whilst driving.
I was expecting that she would be administered some stronger pain relief, monitored for a few hours and sent home.
What actually happened came as something of a shock!
Whilst on the A&E ward the doctor had prescribed morphine and gas and air as she was in so much pain, which once the pain had subsided was quite amusing to witness as she was coming out with all sorts of nonsense whilst she was high as a kite!
It was decided that she would need to be admitted for further observations so at around 4am we were moved onto the children’s ward and we managed to finally get a few hours of sleep before we were woken at 7am.
On their morning rounds I had to retell the whole Turkey saga to the doctors and consultants that would be looking after my daughter. Another ultrasound scan was scheduled and yet more blood tests had to be carried out. Her veins were so bad by this point that it became a standing joke (which to this day is still in place) that they had to get their best nurse on the job. No one could get any blood out of her and nurse after nurse had to be called in to try.
It was so difficult that they had to ultrasound her arms in order to find a vein that they could actually use.
Regular morphine was prescribed to keep the pain levels under control however the nurses were reluctant to believe that she was experiencing the pain. She was prodded and poked by the surgical team, the pediatric team, the ward doctors and the consultants. She would scream in agony and they were all somewhat perplexed by her presentation. I had to stress that she was becoming more and more poorly since her operation and that something was not right.
A mother knows her own child, has a gut feeling that is never wrong and I knew without a doubt that something was very wrong. Her recovery was not as it should be from what is usually a common and routine surgery. Her bloods were fairly normal I was told, she has no fever I was told, she just needs a little time to recover I was told.
But I stood my ground and was adamant that there was something going on that needed further investigation. Her ultrasound scan was carried out by several different people, all escalating in seniority, all noticing something different to the person before them. All getting her to move in slightly different positions so they could get different images from various sections of her tummy.
When they were all satisfied and had exhausted every possible angle the votes were unanimous, something was wrong. Although it’s not the result you hope for, I felt relieved that they had listened to me, that they had discovered the problem and I thought that this would be something that could be dealt with using the correct medication.
Then we got the news that I was absolutely not expecting to hear.
My daughter needed to have another operation.
Things inside her tummy were not as they should be and a second emergency surgery needed to be carried out asap. I won’t go into the details as I’m sure you don’t want to read all the gory stuff! But let’s just say they needed to have a bit of a clear out and a tidy up in there!
Her operation was booked in for first thing the following day, my daughter was scared, I was terrified, but doing my absolute best not to show it for fear of freaking her out anymore than she already was.
I was with her when she was put to sleep, I stroked her hair, told her I loved her and kissed her on the head before they wheeled her into the operating theatre. I felt like a complete wreck, I sat outside, I sat in the restaurant, I cried. I cried silent but huge tears for my baby girl who just 6 weeks ago was a totally different person. I cried for my son, who was home alone while I was in hospital. I couldn’t be there for him even though he needed me too.
I felt like I needed to cut myself in half so that I could give each of my children the care I was supposed to provide as their mum. But I couldn’t leave my daughter alone in hospital. In some ways it was worse than the first time round, she was terrified of the pain that she would be in when she woke up after the operation because her previous surgery was so fresh in her mind.
I wasn’t prepared in any way for the sight that greeted me when after 3 hours my daughter was brought back onto the ward after her surgery. I was expecting her to be in pain obviously, but what I didn’t expect to see was the tube coming out of her stomach, with a big bottle attached to it which was basically collecting blood and gunk from inside of her and filtering it out.
I had to fight back the tears and hold back from her how horrified I was.
To see your baby, not matter how old they are, in such a vulnerable state is such a gut wrenching experience as a mother. As mums we make things better, we take away all the pain and we fix things for our children. When things are out of your control and you can’t abolish their suffering it breaks your heart.
When the surgeon saw us shortly after her return to the ward he told me that they had to do a lot more than they had bargained for. He also told me that I was right to trust my instincts and to have pushed for her to be examined more closely. So if you are reading this and you only take one thing from it please let it be that if you think there is something amiss with the health and well being of your child don’t accept being fobbed off with the first answer you are given.
So much more happened than I shall detail in here, from my daughters panic attacks (which then led to my own afterwards from seeing her in such a state) to my midnight dashes to the nearest supermarket for clean clothes & toiletries, to the panic stricken phone calls from my son about something he couldn’t cope with, which then meant me calling yet again on my incredible friend and neighbour to go and deal with whatever crisis he was unable to navigate, to being discharged from the hospital only to be readmitted just 4 hours later.
That particular stint in hospital lasted almost 2 weeks, so to say we were pleased to be home, again, was an understatement!
The operation recovery process began again, two weeks and she could go back to school they said. No P.E or play for 6 weeks though, she had had two operations within a month of each other and things were quite precarious!
Things seemed to be going pretty well, very painful for my daughter, but she was definitely heaps better after her second surgery. But of course that would be just to bloody simply wouldn’t it, for her to recover and be on her merry way, back in school and getting on with her life like any other regular 10 year old girl.
The morning came when she was due back to school, she was quite beside herself with excitement as she loves school, has lots of friends, is well liked and loves learning! She had been complaining of a backache for the last few days and I told her it was probably due to the fact that she’s spent so much time lately laying down and sitting around with her enforced resting that her body just needed to get moving again. Then she said something that made me think ‘oh ffs what now?!’.
She said she had been having trouble going for a number one, that it hurt her, and she desperately wanted to go but couldn’t and when she did it hurt and this pain in her back was getting worse and worse…
And so Monday morning came and I ran the GP again, went through her symptoms and waited for a call back. I half expected what was coming next.
We were told that as her recent medical history was so complex the doctor wanted her to go straight to A&E.
This time, fully prepared and knowing what possibly laid ahead I packed a suitcase with every conceivable item we could need for yet another hospital stint.
Well it was a damn good idea that I was ready for anything because we were indeed admitted, this time for another week.
My daughter had contracted a kidney infection, however this was not just any kidney infection. Well let’s face it, it’s not going to be anything normal now is it, if you’re up to speed with what’s happened so far you can probably guess that!
This infection was caused by a highly contagious, highly infectious and highly dangerous bacteria!
If there was a prize for person who said ‘FFS’ the most times in 2019 I’m pretty sure I would totally win it hands down above anyone else!
When we were first admitted this time round we were on a regular ward, however when it became apparent just what a pesky little bugger this particular bacteria was we had to be put into isolation. Anyone entering the room had to wear face masks, aprons and gloves and wash their hands before leaving the room and leave their ‘apparel’ in the bin on the way out.
The ward that we had been on had to be totally cleared, cleaned, sealed off and fumigated, we literally left a trail of destruction in our wake!
We stayed as guests for a further week, with an unbelievable amount of tests, scans and needles yet again. When finally we returned home I thought this is it, surely after two operations, an accidental move to Turkey, a preposterous kidney infection of epic proportions and all the related dramas which had ensued there just wasn’t anything else left to go wrong.
Oh how absurd of me to think so foolishly!
To cut what has been a very long story short (thanks for reading if you managed to get through all 4 parts of this) we ended up back in hospital yet again, another kidney infection, this time I don’t think we were in for too long but it had all become a bit of a blur so I’m not entirely sure if I’m totally honest!
Every consultant that we saw had heard of our story, of everything that my poorly little girl had been through and of what a horrific time she had had. They all told us that it would take her a very long time to be totally well again as her little body had been through so much, in such a short space of time.
One consultant was very honest when she said ‘we don’t actually know what they did to her in Turkey, it was like nothing we have ever seen before’.
Now that is something that you never want to hear when it comes to the health of your child!
By this point we were into October/November time and we had spent more time in various hospitals around the world than we had in our actual home!
As bad as it was it made me realise that I was lucky compared to parents and children whose entire lifetimes are spent in hospitals. And they have my utmost respect because coping with everything for just that comparatively short amount of time was beyond horrendous.
My daughters health was slow to improve, she could only manage a few hours in school and it took her up until Christmas 2019 to get back to her normal self, with no pain and not feeling unwell.
She returned to school in January 2020 full time, for the first time since the end of term in July 2019.
For a very long time I didn’t see my daughter smile, I didn’t hear her laugh and she lost her sparkle overnight.
It took 5 very long, incredibly difficult months to get her better and during that time I struggled to be everything I need to be to both of my children simultaneously.
I couldn’t work because my time was either spent in hospital or at home with my daughter as she wasn’t well enough for school, not working meant barely any money coming in which led to it’s own piles of trouble.
I started 2020 with a ‘Fuck 2019’ attitude, raring to get stuck into my business to recoup the much needed lost earnings of the previous year and ready to take on whatever was thrown at me.
However what I hadn’t bargained for at this point was a global fucking pandemic!
I remember right at the very beginning of lockdown a friend asking me how was coping and when I said I was having quite a lovely time she was a bit puzzled. I explained to her that now the whole world was broken it felt as though everyone was on my level for a change! Which she found hilarious, but it’s true!
As a single parent of two children with additional needs (these blogs have only highlighted a small fraction of the health issues my daughter has encountered and nothing of my son) my life is challenging, it’s hard, it’s fraught with difficulties every single day. So to not have to go anywhere and to be able to be at home with my children is for me, pretty fantastic! I would generally only leave my home for anything work related or food shopping, very rarely would it be for recreational purposes simply because my life does not allow for it.
And then here we were, with everyone having to do exactly the same, everyone at home, with their immediate family, having no visitors (I don’t have people in my house as it isn’t something my son is able to cope with) keeping themselves to themselves. Everyone was suddenly living life in a way that seemed pretty normal to me.
So although last year was horrific and this year has been catastrophic in totally different ways I am still here, with my children and doing the best I can for us, for my little family unit. My family have never bothered to enquire after my daughters health, never came to see her in hospital, never offered anything in the way of support, but friends did, work colleagues did, people I had only met once or twice did, people I barely knew showed that they cared.
I’m not telling you all this because I want any pity or sympathy, quite the opposite in fact.
I am sharing this because I want you to know that no matter what is going on in your life, no matter how absolutely fucking diabolical your circumstances seem, no matter that the people who should care the most about you appear not to, it doesn’t matter.
Because at the end of the day you are in the one in control.
I have two choices every day, crumble and fall apart amidst the atrocity that surrounds my world. Or pick myself up and be the best person I can be for my children. I’m not saying it’s easy, some days I seriously wobble because I’m only human, but I make that choice every day.
We all have that choice.
We can all choose to be the best human our circumstances allow for.
So if reading this has made you stop and think about things that are going on in your life (because we all have shit to deal with) please remember that you have the power to take control of your own destiny and make your life work for you.
You are at the centre of everything, your values, your choices, your purpose in life.
Grab it by the balls and make it count!
“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain”
To find out more about what I get up to when I’m not caring for my poorly children you can check me out here…
To read some other stuff I’ve written look here…