Thursday 13 August was the date of Mayhem’s first operation, a biopsy of the tumour. The operation was scheduled for 9am, first in. I stopped breastfeeding him at 6am and he wasn’t a happy chappy. The procedure was delayed, although you are first on the list, any emergency case that comes in takes precedence. Of course, you know this and want the best for anyone, especially if they are in a life threatening condition, but when your child is screaming to be fed and really distraught, you kind of lose your empathy for others.
Mayhem had always struggled to feed, he had never taken a bottle and due to his tongue tie he even had issues using sippy cups and found it difficult to transfer any kind of liquid from the front to the back of his mouth. Amongst the many other referrals I pushed for to try and find out what was wrong with him, through our health visitor I organised an appointment with the Feeding Clinic. At the beginning of July, just before we went on holiday to Spain, before we knew about the tumour, we saw a nutritionist and a SALT. We were quizzed about his diet because he just wasn’t putting on enough weight and dropping percentiles, to a scary degree. He started off on the 70th percentile and ended up on the 5th.
I felt really guilty during this appointment, like a bad mother who was starving her child. They really did think that we weren’t feeding him properly…at first, but by the end of it I think they realised we were OK parents and were worried about our baby. Mayhem ate LOADS. Loved meat, crammed in handfuls of pasta. Was a total baby led weaning success to the point that you couldn’t feed the child, he did it himself; raided your plate every meal, ate at every opportunity and was a total and utter boob-monster. In fact, if he wasn’t sleeping, he was eating, with very little time left to play and hit his development milestones. What we didn’t realise at the time was that his body was working so hard with the tumour that he just wasn’t getting enough fuel. We were feeding the darn tumour, he was being consumed by it. The feeding clinic team prescribed him Similac, a high calorie milk, to try and supplement his diet…the only problem was feeding it to him with his problems drinking (I dreaded going back to work in September as I felt he would be totally dehydrated without the boob on-call). We never filled the prescription though as we ended up in hospital. The one great thing we did discover in hospital was that Mayhem could take a bottle. He mainly played with the teat but there were tiny bottles of sterilised water no the ward with really long screw-on teats and he could drink from them. Yeah! Success!
Before theatre he was allowed sterilised water 2 hours before so these magic bottles really came in handy. I was powerless to help him. As much as we struggled with breastfeeding, well he didn’t struggle, it probably took him a lot longer to feed than most babies and it was harder work for him (the average ratio of suck to swallow is 2, it took him at least 4-6 sucks per swallow). Breastfeeding was harder for me as it was always painful, my nipples hurt constantly during feeding and during his hospital stay he also had his first teeth come through which he promptly used to clamp onto the nipple with to aid his shallow latch. Anyway, breastfeeding should be entirely another post. As I was saying, as much as I struggled with breastfeeding, it was constantly a saviour, an act of reassurance and comfort. Mayhem was distraught that I wouldn’t feed him and didn’t understand why, when he was tired, that he couldn’t have any mummy milk.
I walked the corridors of the ward with him in the carrier (a godsend with two children) and tried to comfort him as best I could. Sod’s law, he just fell asleep as they finally came for him and hour and a half later than scheduled. At 11.30 I carried him to theatre. Put him down on the theatre bed, as he woke up, his eyes flashed with panic and held him down as the general anaesthetic took hold. I didn’t want to go. I didn’t want to leave him but knew he was in capable hands. The biopsy surgeon reminded hubbie and I of Sheldon, the extremely organised nerdy guy from the Big Bang Theory. You never doubted for a second that he was ultra-thorough and knew what he was doing. Mayhem was in capable hands and that’s what we had to keep telling ourselves as we waited. A new record for the longest time apart from my baby, over an hour and a half later before we could go collect him from theatre.
He didn’t recover quite as well from the anaesthetic this time. He was too cold, they had to warm him up, so he was bright red and screaming, a hoarse and wailing cry that I hadn’t heard before and hardly recognised as coming from my baby. I carried him back from the theatre in my arms, and he fell asleep, a tired, fitful drug induced sleep that didn’t last very long. He wanted feeding and I was so happy that did as that meant he was OK, he was back. He slept most of the afternoon.
Chaos was back with Grandma, thank goodness for Grandma. I really didn’t want Chaos to see his brother like this. This was the first time he had ever been away from us, it was hard but he too was in capable hands, having fun with Grandma and his cousins.
Luckily (although we didn’t feel very lucky) all of this had happened up North, in Lancashire, where my Mum, two brothers and their families just an hour away from the hospital. Had this ‘discovery’ happened in Kent we would have been transferred to Great Ormond Street Hospital in London, without any family around, Hubbie and Chaos would have had to commute daily from Kent (over an hour and a half each way). Whereas in Alder Hey, Hubbie had a room at Ronald McDonald House and Chaos was staying there with him. His room, called Minnie Mouse (very child friendly), was a Godsend, it meant he could be on the ward in less than 5 minutes. We were in this together as a family. Although I am not a massive fan of McDonalds, in fact, quite anti, as I don’t eat meat and haven’t done for a lot, lot, lot of years, Ronald McDonald House Charity was beyond fabulous and not only helped our family when we most needed it but also the youngest of my two brothers who’s child had a serious heart condition, they stayed over 100 days in a RMH in Auckland.
So Mayhem had the peace and quiet and opportunity to sleep. In K2 ward we were lucky enough to have our own cubicle-type room. Although we were no longer officially under Cardiology and were now under Oncology they let us stay in K2 so we could have our own space. When the doctors did the ward rounds we were nodded and smiled at but Cardiology never came to see us, we saw Dr James Hayden almost every day, if not he sent his colleagues to take bloods or keep us updated. Although we didn’t quite know what type of tumour, the doctors were fantastic at keeping us updated, telling us what they thought, even if there wasn’t a definite diagnosis. My friend who was training as a nurse kept reminding me that diagnosis means ‘best guess’, sometimes Doctors just need more information before they can find out what the hell to do to treat the condition.
After an afternoon of napping and feeding Mayhem was back to his usual smiley self. The ability of the boy to bounce back astounded me. Most adults would be complaining, he was playing with and smiling at the doctors an nurses as though nothing had happened. In retrospect, at 10 months old, this was probably the best time for this to happen. Before he developed fears, words and emotions that would have made this whole tragic situation even more difficult to experience.