The Operation

We knew from the beginning that Charlie would need an operation (the Duhamel Procedure) eventually, but after his diagnosis we were sent home with the plan to do manual bowel washouts for approximately three months. We had our review just after Christmas and were told we would receive a letter with the date for surgery in a couple of month’s time.

I was a little disheartened thinking about having to do another couple of months of washouts, but a few days later, the appointment letter arrived. Charlie’s surgery was scheduled for 17^th January 2018, with him being admitted the day before. I immediately rang to confirm we would be attending for surgery and then went about texting and ringing Davy and the grandparents of our news. Then I looked at my precious little boy and started to get a mixture of excitement and anxiety about what we were about to put him through!

I would be staying with Charlie during his visit to the Barbour ward, so I packed us both the essentials for our weeks stay. I was a lot more prepared than our initial visit in October! The days rolled by so quickly and suddenly we were on our way to the Royal Children’s Hospital. When we arrived they were still getting our bay ready, eventually we got settled into the ward. It felt weird being back but also reassuring that I knew I would see familiar faces from the nurses and knew how the ward worked with our nurse assigned to us at every shift.

Charlie had some pre theatre tests and I was advised he would need to be fasted four hours prior to going for surgery, so 4am would be our last feed. I set an alarm for 3.30am to ensure he was well fed prior to being fasted. Our night was uneventful, he woke and fed a handful of times and then we had our last feed at 3.30am, he was fine and fell straight back to sleep. When he woke, he wasn’t screaming out for a feed as there were plenty of distractions with nurses in and out until the surgeons came to take Charlie up to theatre. Davy and I went up with him, I carried Charlie and when I handed him over, I burst into tears, terrified that he would be upset and what the outcome of the operation would be.

We had been advised the operation would be anywhere from 3-5hours long. They had to make an incision above Charlie’s groin, take a biopsy of his bowel, send this to pathology and wait for confirmation that they had now got a section of bowel with good ganglion nerve cells. If this was confirmed, they would then pull this section through to his rectum and join it up, simple!

While Charlie was in theatre we had planned on nipping out to grab something to eat quickly, so that when Charlie returned from surgery we would be able to be there for him without needing to leave again. However, we were asked to wait around in the hospital in case they needed to ask us anything urgently or gain further consent during the operation. Time seemed to drag by, I was exhausted from constant night feeds, so I slept for awhile and then had to express to keep up my milk supply. When Dr Milliken came into the room and advised us that the operation had gone well, I could see and feel the relief wash over Davy and I.

Charlie was taken to recovery and so now we just had to wait for Charlie to be brought around before we could go and see him. Again this felt like hours! At 3pm we were taken up to recovery, Charlie was wired up all over, he had a wee hat on to keep him warm and blankets upon blankets covering him up. We just sat with our wee man, and although he had been brought round, he was so dopey due to the morphine. We were transferred back to the Barbour ward shortly before 5pm.

Charlie’s first night was fairly uneventful, I couldn’t feed him so I still had to get up and express. The nurses also monitored Charlie’s vitals closely. The following day was also quite quiet, Charlie just slept and slept. Eventually they reduced his morphine from constant drip feed to push button release by the nurses. This could be activated every 20minutes if needed. Later on Thursday evening Charlie started to get a bit more unsettled. He would cry out quite loudly a sharp piercing cry and writhe about a bit in the cot, so the morphine button was being pushed a lot. 

Through the night every time Charlie woke, I was up by his side. Thankfully we had an amazing nurse who would almost to the minute be back at 20minutes to push more morphine. In the early hours she also advised she had rang the anaesthetist on shift to see about constant morphine being hooked up again. When he came down, he wasn’t keen to do this as he said it could compromise his airways and that given the time there wasn’t the same staffing levels to help if something went wrong. I took his professional opinion and so myself and the nurse continued to ensure Charlie got the morphine every time.

The following day on the Friday, Charlie seemed to turn a corner, he was more alert and didn't seem in as much pain. I was also allowed to start feeding again...I couldn't wait to hold Charlie and get cuddles while he fed! He latched on fine and tolerated feeds throughout the day, it was just terrifying lifting and moving him with all of the wires still hooked up!

The following day on Saturday, Charlie was still feeding great and he was in good spirits, but his tummy had started to puff up. The Drs decided to put an NG tube down in case they needed to aspirate his tummy. We were just hoping his bowels would work now! When the nurse had done the ng tube another said it was too small and they would need to do it again!! Charlie was hysterical getting it done again and all of a sudden he let out a massive fart and his tummy went flat, when I checked his nappy he had pooed! Finally a few small nappies started to happen, it was great!! Things were looking up, we had a couple of visits from the grandparents and I went into Saturday night feeling positive! 

Then out of the blue Charlie started to projectile vomit. After 3 feeds where he brought everything up I was getting panicky but the nurse said not to worry! Then when he kept feeding but being sick I became a slightly hysterical, feeding him was just making him sick it seemed cruel to keep feeding him! By the early hours of the morning I was beside myself and Charlie was so unsettled, not wanting to feed! The on call Dr was called, he came down to the ward, but didn’t seem overly concerned as the vomit wasn’t green. This would have been a sign that something was wrong with the bowel. Later on, as I was still not happy that Charlie was still vomiting, the on call Dr was called again. He then rang his superior at home and he advised to immediately get Charlie hooked up to a drip again as he worried he might be dehydrated!

In the morning when the posse of Drs came round Irene advised he should have been on the drip sooner! I was also told I couldn't feed him as they needed to understand why he was being sick. Although his vomit wasn’t green, there was a risk that his wound may have been leaking internally as the sick was bright yellow. The Dr said if it was going to happen, it would always show a few days after the op! Thankfully they ruled out that a leak but as they didn’t know why he wasn't tolerating feeds they still wanted Charlie fasted. The problem was Charlie wanted fed! 

My mum and dad arrived to me advising the Dr that I would be feeding him even if only to comfort him and that I would try not to let him get milk! Charlie didn't take a dummy so he always calmed down with a quick comfort from me! The Dr eventually agreed but said I had to be strict and they would aspirate within 30mins of his feed to ensure the milk if any was taken wouldn't get to his tummy and he wasn't sick again! I hated it...latching him off and watching them drain the milk back out! I was also exhausted. I looked and felt limp, tired and sick all rolled into one! 

Thankfully between my mum dad and Davy I got to go to the relatives room and every time Charlie  cried for a feed someone would wake me up, I’d feed for 5minutes and then go back to sleep! My mum the superstar she is even stayed with me through the night into the small hours so I could get as much sleep as possible. After every 5minute feed she would put Charlie back into the cot and get him off to sleep! I was probably asleep quicker than Charlie at times! Around 3am my dad came back for my mum as she had work the next day and I moved into the chair bed beside Charlie on the ward again. 

Thankfully throughout the night Charlie tolerated the small 5minute feeds so we continued with small feeds all of Monday and Tuesday. I desperately needed to get home with Charlie; we were both exhausted as it was impossible to get any inkling of a normal nights sleep. On the Tuesday night, the Barbour ward had 5babies and I was the only mum staying overnight. This meant the nurses were literally run ragged between crying babies wanting fed, nursed, winded or changed! 

The nurses normally had the chair beds wheeled out by 9pm with the most delicious tea and full fat buttered toast for the parents. However, that night by 11.30pm I asked where the beds were so I could wheel mine out and gave up on the tea and toast, the nurses didn't have a minute! During the night I even joked with them that I could mind another baby to help them out!

The Drs were finally happy that Charlie had turned a corner, his op had went well with 15cms of bad bowel removed. He was passing poo (although he didn't seem to like it) and feeding well again. We were discharged on the Wednesday! 

We were delighted to have Charlie home, his op had worked and it felt like I had a "normal" baby being able to change a dirty nappy and sniff him to see if he needed changed like all the other mum's I'd seen doing this! 

I had hoped and prayed that Charlie's op would be a success and it was all going great until it stopped....