This is another long one but I wanted to include all the details for our friends and family. We have had an incredible amount of support but it has been difficult keeping everyone in the loop when things are emotionally challenging.
We went back to the Portland to meet with the new surgeon, I haven’t named anyone else for privacy etc. but this surgeon is now affectionately referred to as the Big G in our household. With the emphasis on the GGGGGGGGGGGGGGGGGGG. Big G was the first person who had been able to examine Ottilie with her remaining calm and was even able to manipulate the lump from the outside, enough to know that it was now much bigger than the ultrasound indicated. He estimated it to be around 15cm in length. He was able to access the images from the MRI, and whilst you know that 15cm is the length of a small ruler, we were not prepared for seeing something of that size inside our Babe. He was also fairly certain it was on an ovary. As the bloods had not yet come back, we couldn’t be scheduled for surgery during this week. Again, we had decent conversations around a diagnosis and treatment and we left that appointment feeling much better about the whole thing.
Ottilie’s bloods came back with no markers for malignancy, however this couldn’t and still hasn’t been ruled out until the histology (slicing/dicing/testing of the tumour once its removed) comes back. The surgery had now been scheduled for the 13th.
We had to meet an oncologist to discuss the surgery further and the prospect that Ottilie could go into surgery and come out not having had the tumour removed. The conversation was around the potential that the tumour could be involved with another part of her body, not just her ovary. And if this was the case they would biopsy it, stitch her back up and think about Plan B. We were also told that along with the possibility that they couldn’t remove it all, they may also need to make an incision upwards (like an upside-down T) if during surgery they couldn’t remove the tumour through a caesarean type incision.
We went to Great Ormond Street for another ultrasound and a set of bloods. Thanks to boob and the iPad these went without incident.
We moved into GOSH in preparation for surgery on the 13th. We met the team of people who would be taking care of O, nurses, anaesthetist and the ward doctor. Amy set up in her little cabin bed behind a curtain and we asked if we could swap Ottilie’s cot for a bed because this kid normally sleeps on a floor bed and the cot was far too small especially when Amy needed to feed at night.
I came back from my hotel for 7am, and the nurses told us we would be going down to surgery at 08:30. So we just had 90 minutes to kill whilst O tried to scoop out Amy’s boobs and/or chewed on her t-shirt. Nil by mouth with a boob obsessed toddler is a challenge let me tell you. We were able to distract O with a super long shower and a splash about.
The anaesthetist came and had a chat about how he would use a ‘caudal’ which is much like an epidural but it goes into the back of the pelvis and would mean that they wouldn’t need O to be anaesthetised so deeply.
Ottilie was then given a pre-med that was described as like having a couple of gins, it would make her make much more chilled for the actual anaesthetic. She was honestly like a happy, incoherent little drunk in Amy’s arms, she shouted out ‘bubbles’ and ‘lady and cheetah’ (her fave toy figures) randomly before going into the theatre. Amy held O as she held her own mask over her face, and was placed down on the bed, Amy found this much tougher than I did. My logical brain told me that these people were experts and she was in the best possible place for this surgery.
We had a few hours to kill and had intended on sitting in the room with Netflix, one eye on the film and the other on the clock but on the way back the porter advised that we get out for a bit of fresh air and a wander, so the time goes more quickly. We set out to a parade of local shops and stocked up on all of O’s favourite fruit and veggies, which included her fave ‘babal’ which is basil to you and I.
Around 11am when we were just unpacking all our goods, the nurse popped her head in and said O was waiting for us in recovery. We did a power walk down to recovery at the speed of two parents whose toddler had just had major surgery. As soon as Ottilie was awake she was straight on the boob, where would we be without those ay.
Ottilie was keen to get out of bed so we let her, she’d had one dose of morphine when she first came round. But her pain was being managed through oral ibuprofen and paracetamol, with the paracetamol going through the cannula in her foot a couple of times at night so she wasn’t woken.
We did actually have a visitor, and once O had woken from her nap she was straight down on the floor playing with her little pal, watching Duggee and munching on some crisps. What a total babe.
The surgeon came back late into the day and said he was happy for us to go home, either that evening or in the morning. Quite remarkable as we were told it was a minimum of six nights in hospital including the night before, and here we were able to go home after only two nights. Big G had said all along how quickly kids bounce back…
We were home by 3pm and Ottilie was straight back at her kitchen making tea for us all.
I guess to tidy up some of the detail I may have missed, we are incredibly fortunate that our employers provide private healthcare, and this includes Ottilie. We don’t know how long we would have waited on the NHS, but things moved incredibly quickly for us and we are so grateful for that.
We couldn’t have asked for better people looking after us all throughout the whole process, from the anaesthetist popping his head in our room to Big G’s secretary texting Amy on the morning of the surgery to wish us well and to tell us how she is in the best hands with Big G. Every person we encountered was so patient, kind and gentle with Ottilie, everything you need when your tiniest girl gang member is unwell.
The ward we were on was more like a hotel than a hospital, so it was super comfortable throughout. It meant Amy had a bed and a shower in the same room, so she never needed to be away from O. I stayed in a hotel a few minutes away, I left the hospital late and came back early after a pitstop for coffee for Amy. With that being said – all the people we encountered also work for the NHS, and GOSH is one of the best hospitals in the world so private or not I am sure everyone leaves there feeling they’ve been well looked after.
We are back tomorrow for a follow up with Big G and will get the results of the histology next week. We will keep you posted…