In the final weeks of December 2003, Jo’s mother Ann discovered she had leukaemia. She didn’t tell Jo and Tony until after Christmas as she didn’t want to “Spoil it” for her children. Most of 2004 was spent under this shadow but with Ann finally looking to be on the mend, a secondary infection took hold and she had to be sedated. Jo spent the back end of the year making daily visits to her mother in Manchester Royal Infirmary. This is when I believe my wife learnt to be good at visiting hospitals.
Thomas was due to be put back together last Thursday but unfortunately the child in front refused to stop bleeding. His operation was cancelled allowing me and Jo to dash to Christmas do’s we had all but given up hope of attending.
His stoma reversal was rescheduled for Monday but unfortunately with less than an hour to go, the anaesthetist discovered his potassium levels to be dangerously low for surgery. Thomas’ consultant, a dead ringer for Peter Lorre, apologised profusely. Thomas’ supplements were adjusted and an agreement was reached to try again tomorrow. The consultant went off to play cards with Sam in promise for some air tickets to Lisbon, I turned to the piano player in room 6 and asked him to “play it again”.
Today was tomorrow and it slowly became one of the worst days we have endured for months.
The day started at approx 5am when St Marys rang to inform us that Thomas had been struggling with his oxygen. He had been moved back from high dependancy to intensive care and put back onto a ventilator.
Normal life resumed, breakfast, showers, running out of clean underwear, dropping Lilly off at another Christmas party etc etc punctuated by phone calls to St Marys with fingers firmly crossed that transpiring events would not postpone his operation any further. The underwear crisis was solved by raiding the as yet unused “Emergency suitcase” we carry permanently in the boot of our car. (You never know).
At Bolton hospital, it was all action stations. Jo settled down to breastfeed Mia whilst the same massed ranks of people who brought her and her brother into the world worked on the newest arrivals to NICU, another set of twins. We wondered if they might be the children of the other parents who attended our multiple birth parenting class? All of whose children were due well before ours.
After weighing Mia (1.1Kg), Jo placed her back into her incubator and we headed off to St Marys. Another phone call confirmed that Thomas’ operation would indeed be cancelled again. Already in transit and feeling utterly deflated, we decided to stop for some lunch.
Dukes 92 holds a special place in our hearts, we love it so much that in October 2007 we chose it as the venue for our wedding reception. One of the main attractions of our summer adventure was to be able to take our narrow boat through lock 92 on the Rochdale canal and stay the night in the Castlefield basin. As a stopping off point it between hospitals it made perfect sense.
We were in and out for our cheese and pate lunch in half an hour, I’d like to say it was excellent value for money but the hidden charge of £100 for parking was a sickener. The main car park being full we’d descended the ramp to what we had always considered the overspill area. Unfortunately our muscle memory was aligned to evenings and weekends. (I don’t often get to have a mid week lunch date with my beautiful wife). The staff at Dukes & Castlefield Estates were apologetic but they had us bang to rights. “Pay up suckers”, rang in my ears as we headed to see Thomas in St Mary’s. (Where’s Martin Lewis, money saving expert.com, when you need him?)
** STOP PRESS **
(I emailed CPMS who handle the Car Parking at Castlefield, apologising for our error but explaining the mitigating circumstances. The fine has been rescinded and I have made a donation to The Cystic Fibrosis Trust instead. Everyone has their causes, thank you very much Lesley. We will NOT be doing that again. love to your twins x x)
Now although St Mary’s is a hospital where you want your northern sickly child to be in terms of clinical care, as a parent it leaves a lot to be desired. Having a baby in intensive care is a spectator sport at best. You cheer your children on but there is very little you can do to influence proceedings. You are utterly reliant on the skills of others, the strength of your child and a large dash of good fortune. The nurses in charge on Thomas are rotated too often for our liking, I’d assumed this was to avoid them getting too close to the children in case they didn’t make it but today we were assured it was simply down to chaos.
We arrived in a maelstrom of emotion, angry over the parking fiasco, confused as to what had set Thomas back, needing answers to questions. The young nurse had only just taken over, I don’t think she’d had Thomas before, I was interrogating her at a million miles an hour, she couldn’t answer fast enough, I got upset and had to leave the room. Some time later we all reconvened for another “Clear the air” meeting. The usual platitudes were issued, we ARE important, they DON’T share information as well as they could. Calmness restored we settled down to visit our poorly son.
“Operation put Thomas back together again”® is on hold for the foreseeable but tomorrow we will hopefully get to see inside his brain as he is due an MRI scan. His neurologist is a cross between Omar Sharif and the man who MOT’s my MX5. We like him. We are trying to avoid Thomas having a shunt if at all possible and he has told us about the crazy experimental shit they do in Japan were apparently there is a surplus of neurologists and they get bored easily. Something to do with inserting the testicles from Minky whales into babies brains, or so I would like to imagine.
On the way home we called at our third hospital of the day, Trafford General – the birthplace of the NHS. Remember Ann from the beginning of this ramble? Well on Monday night she was admitted to hospital with a chest infection. Yet again Jo was visiting her mother in hopsital, hopefully she won’t be in for as long this time? If she is? Well, my wife is rather good at visiting hospitals 🙂
“So take a good look at my face
You’ll see my smile looks out of place
If you look closer, it’s easy to trace
The tracks of my tears..”
© Smokey Ronbinson’
Although I often feel the need to cry, my tears have long since evaporated, my wells have run dry. I don’t know how Jo finds the reserves to always be spending too little time with our precious teeny tiny twins. An hours cuddle with either each day is the best we can hope for under the current punishing regime. She is a mighty impressive women my wife.
That concludes this happy update, Mia is progressing excellently and all being well is due to be self sufficient, breathing wise, on Christmas day. She is a little scrawny and needs to bulk up but that will come with time. Her Brother? Although his stoma bag is a little unsightly and his hydrocephalus has swollen his head (I’m still hoping he has a Mekon-like genius sized brain) Thomas is a beautiful, strong baby boy. Please enjoy this video of him hiccuping.
If you raise a glass on Christmas day, point it in the general direction of a Northern hospital as we are likely to be there and remember to cuddle your precious children.
Merry Christmas from Browntowers and all who sail in her x x x.