Medical Update
The Joy-Pain-Grief-Love axis
Itâs been quite a hard week. Quite a hard 3 weeks in fact, though Iâve been pretending it wasnâtâŠsometimes thatâs all I can do.
The day of Ninaâs birthday party I knew she had another Urinary Tract Infection, I could just tell.
This was an especially heavy blow, because it meant that the prophylactic antibiotics I had finally relented to giving her, had failed.
Iâd been reluctant to give her daily antibiotics for two reasons: Firstly the impact on her gut/v*ginal microbiota (and itâs the v*ginal microbiata that blocks/kills fecal bacteria travelling from the an*s up to the ur*thra) and secondly the danger of UTIs building resistance to the antibiotics - both my fears have been realised.
I dropped a sample into hospital immediately after her party⊠sure enough it was a UTI, sure enough it was resistant to Trimethoprim - the antibiotic we had been giving her daily for six weeks.
So she was prescribed Cephalexin for 5 days, I picked up the prescription and something rose in the back of my mind - I shouldnât have ignored the instinct, but I was torn between never wanting to give her antibiotics again and also wanting to nip this bug; despite my instinct to give her seven days of antibiotics, I gave her the 5 days she was prescribed. Within 3 days of her finishing the Course I knew she hadnât cleared it. But by then it was Friday and I had to wait until Monday to drop the sample: I dropped a sample on Monday and also on Tuesday, I waited all Wednesday, watching her worsen, desperately trying to lessen the pain for her and slow the infection by giving her fluids every 10 minutes, cancelling everything else, feeding her extra and warming her torso; it was exhausting and I barely ate or slept, and by Thursday I knew it was all for nought and the infection was in her right kidney, I was debating taking her in when - success!
At 4.30pm the doctor called with the result:
E.Coli resistant to Trimethoprim, resistant to Cephalexin, resistant to Amoxycilin, resistant to Fluoroquionolones. I was devastated, sheâs never even had Amoxycilin or Fluoroquinolones: her bugs and her DNA are mutating, learning to become resistant.
This reality pulls the breath from my chest, because I know where this leads.
Eventually her UTIs will become untreatable, when that happens she will likely have to have a urethrectomy (a hole cut in her abdomen, which will raise her chances of other kinds of infection, and limit her physical development, how we play, how she moves, even carrying her). If she still gets UTIs after this, then itâs game over - because untreatable/untreated UTIs become blood infections, resulting in death from sepsis.
And thereâs more, though I wish there wasnât⊠because Ninaâs only option of medication was Nitrofurantoin (an antibiotic that can cause Kidney dysfunction) and because Nitrofurantoin is expensive, the hospital policy seems to be to pass that cost on to pharmacies, so the doctor (had to) refuse to give me the medicine, which means I was dashing between late opening pharmacies at 6pm on Thursday, only to be told they have to order it in, which is 2 working days, because itâs expensive...
Which led me to taking her into hospital after all, and somehow still being declined Nitrofurantoin, despite her having a confirmed UTI, because she âseemed clinically wellâ.
After ardently explaining that Nina doesnât present at all like other toddlers, I had to relent to two blood draw attempts in order to tick the next step so the doctor could prescribe her the meds - even though the blood draw attempts failed, and the ensuing stress of the pain and screaming on Ninaâs little body left her hot and floppyâŠonly then did the doctor prescribe Nitrofurantoin. Nothing had changed, except Nina had been needlessly pricked and left screaming and in pain and floppy.
The rage and distress at knowing she has a diagnosed UTI but is being declined treatment until I put her through physical trauma feels so wrong to me, and honestly itâs hard to write about it, because it sits so close to the coercion, politics, loss of autonomy, disempowerment that resulted in C-section trauma, and thatâs just really hard.
Nina was also left mildly traumatised and exhausted, so fell right asleep and napped from 9pm until 11pm, then was awake until 7am in the morning - another cost to her body, another cost to my mental capacity and overall health - all because a medication is expensive. I packed everything she needed for hospital but forgot anything for myself - most especially painkillers.
Iâve missed pilates this week due to catching samples and dashing to appointments so that I could hand in samples, that one class missed has left me in considerable pain because Iâm fire fighting the postural issues rather than recovering, and Nina missed her sensory class which is sad for her, considering she cannot go to many classes. It got to 7am and we slept from sheer exhaustionâŠbut on waking at 9 to see the consultant, realised I NEEDED painkillers, and clothes, and Ninaâs meds from the fridge at home along with her foodâŠafter a lot of fretting, being declined for help with Nina while I went home, even texting her dad as a last resort (nothing), I called Jaimee, who was able to be available; she went home and got the stuff we needed and even brought me a coffee, and fed Nina while I showered in the hospital bathroom - those 3 hours at that moment, was the difference between Nina eating and not, having her meds, and me not drowning - because I can tell you now I was sinking.
Thank god for my group of close friends that I text in rough times, thank god for their kind words of wisdom. Thank god for Nicola and Jaimee, and the money to pay them for more than the bare minimum 11 hours per week that we absolutely can only survive on when everything is going well and we are not in the thick of it - like we have been these three weeks.
I donât see it easing for the next few days, Ninaâs just had a Big seizure 2 hours ago, most likely from the UTI or the stomach upset caused by the antibiotics - causing her a lot of pain in real time - I hope the Neural referral comes through with an appointment soon. I hope I will gather myself again soon.
Yet even through the falling apart, even through imagining her death, the words that come to me are that I was privileged to be her mother, her caretaker - and I am, I am deeply privileged and I feel lucky.
How strange to say in this moment that I feel fortunate - I canât explain it but the feeling is there, right alongside my grief, while I sit here in the nursery and watch my baby breathing, both grateful and afraid as she takes every sleeping breath. A few minutes after her seizure tonight, she was blotchy and screaming and convulsing in painâŠshe suddenly stopped crying and smiled at me with her adorable teeth and big brown eyes - it was like nothing had happened, it was such a shock, and so oddly typical of the Joy-Pain-Grief-Love axis that we spin on.
Just like these pics - here she is, in hospital, with a UTI that would, untreated, become fatal, and having an absolute blast with her tired, joyful mama. It sounds a bit banal, but her love really does keep me going, it keeps me breathing through the impossible.
Now this UTI situation for us is in real-time and live. So I need to talk real talk: firstly, if youâre reading this and you know anyone, a friend with a child like mine, a doctor, a renal specialist, a story you read 5 years ago - I donât mind, please share. Please send this to them or send me the link or anything: because I know almost nothing and I need data, Iâll accept it from anywhere and Iâll be grateful. Secondly - the only reason I could pay for those 3 hours help from Jaimee out of nowhere yesterday morning was thanks for crowdfund donations and substack subscribers, if youâre able to share either of them with people youâre acquainted with, it could potentially help us afford the help we so need, and Iâd be so grateful for that too. Thank you, and love from this tired, scared mama, and this joyful little cutie x