We’d had a pretty good night’s sleep, with Dom on a much lower amount of morphine but far more comfortable thanks to having the catheter out and the amazing healing ability of his young body. A very helpful and keen nurse brought supplies for removing chest drains at 8am, and shared her sentiment that she couldn’t wait to see Dom freed from some of the tubes and cables that had been tying him up. This was indicative of the attitude of a lot of the nurses – they had a very obvious compassion and desire to see Dom doing better, and even though they worked in a hospital ward they thought that Dominic was especially festooned with cables . We had a long, nervous wait for the Prof to arrive. I was confident that there hadn’t been much fluid draining overnight – the suction machine showed something between 10 and 20 mls since 4pm the day before. Early in the morning, about 9am, my parents arrived. It was awesome that they’d driven all the way down from Tauranga to be there. They bought us hot drinks and a paper, we had whispered conversations while Dom was sleeping, and I showed them around the ward and told them about the journey so far. When Debbie’s mum arrived I went for a walk with my parents to the Ronald McDonald Family room (one floor up, next to Ward 18) and showed them where the washing machine and drier were. I asked them to do a little laundry for us – we’d brought enough clothing for 3 nights, knowing that there were laundry facilities on site.
Barbara brought more delicious food in with her, and Dom spent most of the morning asleep. We had to hold Dominic down for another heel prick in the early morning which was horrible. Around lunchtime the Prof popped in and checked the drains, said they could come out! There was a few minutes spent working out how to get the morphine drip to squirt out 2ml in one hit (a bolus?), then the Prof popped off to see another patient while the morphine kicked in. It’s a bit rough with little kids sometimes. If a heel prick is needed (or indeed a regular vaccination) the parents are asked to hold down the baby for the duration of the procedure. Babies don’t like being stabbed. For heel pricks they are cut then their heel is squeezed over a period of 30 seconds or more to get enough blood out. With the removal of chest tubes we ended up holding Dominic down again. It was pretty horrible, but I managed not to faint The prof peeled off the dressings, cut the stitch that was holding each tube in place, and slid them out. There was a little bit of fluid on the end of one of them, but not much in the way of blood or pus or anything. The front drain site did ooze a little, making a little reservoir of tan liquid under the fresh, clear-plastic dressing that was slapped over it. That drain had been oozing for a couple of days – nothing to be worried about, just a consequence of having a hole cut in Dom’s side and a tube inserted to keep it open.
The local anaesthetic in his back came out too – a tricky bandage to remove but a tiny tube. It was a huge relief that Dom was down to 5 wires after the chest tubes, local paravertebral infusion and spare IV come out. His morphine was turned down to .5ml/h. He had another chest x-ray shortly after tubes came out (his third in three days), then his morphine was turned off at 2pm. Dom woke up in the afternoon and was a little uncomfortable but distractable with TV. Pringle phoned the ward to say that the chest x-ray clear and we could be discharged. The nurses on the ward were a little surprised that we were being discharged, and made it very clear that we were welcome to stay if we were at all unsure. We left hospital at around 6pm, once Dom’s morphine had worn off and we could see that he was OK. He was a bit grumpy in the last hour in hospital but as soon as he realised we were leaving he perked right up! It was a very smooth car ride home, with Dom being happy and curious and quiet the whole way home. He even slept for about half the car ride.
When we got home we decided to have takeaways for dinner with my parents. We were amazed at how much Dom had improved since the morning. He went to bed at about 7.45pm, and I followed shortly after.
On Sunday Dom was in good spirits, crawling around and playing with toys. He only stayed up for about 45 minutes at a time and had frequent naps, and wasn’t really eating solid food, but he was much more himself.
Unfortunately he was less comfortable by Sunday night and on Monday he was in a bit of pain, complaining and not being keen to do much other than sit on one of us, have breast milk or sleep. His tummy was making ominous bubbling sounds, he threw up once, and he was obviously constipated. He slept a lot of the day, but wasn’t happy.
On Tuesday we took him to the GP as early as possible (11.45am unfortunately) to see if there was anything we could do for him. We thought it was constipation and tummy trouble. The GP took a look at his chest and thought one of the drain sites was infected! She swabbed it and phoned the hospital, trying to make an appointment for us. We thought it looked like a rash under the dressing, and that the drain site had some yellow gunk around it but that was the dried up ooze from when the drain was taken out. Either way, we were happy to get a second opinion – especially as the issue of his tummy discomfort hadn’t been dealt with to our satisfaction because the GP had been distracted by the infections issue.
At 1.15pm we left the GP with a referral to hospital. More than an hour of sitting around for a 10 minute consult and a referral. We had a quick bite to eat, threw some stuff in a bag, and drove down to Wellington Hospital.
We’d been told by the GP (who’d spoken to one of Dom’s doctors) to go the pediatric day ward. When we got there they told us that they didn’t deal with surgical patients so they escorted us to A&E – a lengthy walk through the hospital. We checked in and sat in the windy lobby of the A&E department, with Dom making whimpering noises of discomfort pretty much continuously. After about 10 minutes the house surgeon who’d been on the team looking after us showed up in A&E and told them that we were supposed to be in the pediatric day ward, and that there’d been some miscommunication. The prof had sent her to escort our family back to where we were supposed to be. It’s little things like that which make you feel looked after, even in the face of a minor stuff-up
The surgical team (Prof, AJ, Hany the house surgeon) took a look at Dom and immediately said “contact dermatitis!” not infection. It took the prof about 5 seconds to make his diagnosis, which was handy as he was paged for a surgical emergency just after he popped his head in the door. The hours worked by staff at Wgtn Hospital are kuh-razy. We saw the surgical team most days as early as 8am and as late as 8pm.
The pediatric registrar took a look at Dom to see what the problem was – he thought constipation and upset tummy, much as we had. Dom wasn’t running a fever or anything so he thought we could probably go home, just keep an eye on him. The prof rang through asking for a chest x-ray just to be sure there was nothing untoward going on.
We trekked to the x-ray department, waited, had one x-ray which was not quite clear (Dom slightly rotated?), had another x-ray which was clear, then headed back to the Ped day ward. We waited a while, then saw the registrar again. He said the x-ray showed fluid around the lung and we should expect that Dom might need further surgery to drain his chest. We were pretty worried by this, but he said the prof would make the call. A nurse arrived shortly after that to start rubbing numbing cream on his elbows for IVs, and said that we’d be moved shortly back into Ward 19. By this time it was after 4pm.
We waited about 25 minutes, Dom went to sleep on Debbie, and finally we were moved into Ward 19 again. We had a 1 person room this time, which subtle clues to indicate that it used to be a toilet/shower and had been converted into a room with a bed (there was still a tap in the wall for the shower temperature). We waited some more, were seen by a paediatrician who wanted to keep Dom in for obs, had more fussing about with numbing cream and checking Dom’s bruised arms for good spots for IVs. We were both quite stressed about the prospect of more surgery, and said so to the paediatrician. She looked a little confused and asked one of the surgical people (who was just across the hall) to come and talk to us. It turns out the first paediatrician had read the x-ray wrong, and that Dom’s diaphragm was slightly elevated because of the removal of the lobe and there was no significant fluid in the chest cavity. Even if there was some that wouldn’t necessarily mean surgery, but given the x-ray Dom was fine.
We were much relieved and were happy to stay in overnight for observation. Dom had pain relief (he hadn’t had anything since 10am with us being out all afternoon), was a bit unsettled and unhappy for a while, but got to sleep before about 6.45pm. We went and grabbed a TV and rigged up an aerial using a coke can and an alligator clip, watched some TV, ate some bad hospital cafeteria food, then went to sleep. Dom pooed at some point and was much more comfortable, and in the morning we were discharged and went home.
Since coming home Dom has been much, much better. He’s been crawling around, climbing on stuff, smiling, generally being much like his pre-op self. He still gets tired a little more quickly, and he’s got some nasty nappy rash thanks to his bipolar bum (he pooed about 8 times on Wednesday, and not small amounts), but he’s doing well.
We got out of hospital almost exactly one week after we arrived (9.05am Wednesday, 5 minutes off our arrival time) and this time it looks like we’re out for good!
These two photos from yesterday show how incredibly well Dom's surgery incision has healed up. Only 9 days after the surgery and it already looks like a minor scratch!
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