So it’s hard getting out of bed on Mondays at the best of times, but this Monday was harder than usual – the alarm went off at 5.45! Alex and I were headed into DOSA for 7am. Monday was Port Removal Day! We only had a week’s notice of the date, we were on the list of ‘non urgent’ surgeries so we were given a slot when one came up.

The DOSA lists are organised by age – the younger you are the earlier you go. On Monday, Alex had the dubious honour of being the oldest and therefore the last on the list. We did all the paperwork, saw the surgeon and the anaesthetist, had his obs done and made the happy discovery that he has nearly cracked 16 kilos! (15.8kg to be exact) and settled in to wait. Alex was very patient and when we finally got the call at 11.15am he was super excited to smell the colours. Colours smelt and rainbow song sung, I left him in the capable hands of the surgical team and went to grab some lunch, and after about an hour and a half I headed up to wait in the day surgery area.
Nine times out of ten Alex comes out of the anaesthesia really well, the tenth time is usually a big melt down. Usually this is triggered by something being on his person that wasn’t there when he went to sleep – usually a canula in his hand. This time I thought I might forestall this reaction by telling Alex that there might be a canula, and if there was to just very calmly say ‘excuse me nurse could you please take this out of my hand’. I also mentioned his t-shirt might be off and again to just calmly ask for it (while this might seem a bit odd that he’d be upset about a t-shirt, the one he was wearing is a bit of a special one with a googly eye on the front). According to the nurses, this was exactly what he did, beautifully calm and with lovely manners.

Unfortunately I’d forgotten to warn him about the dressings he’d have over the wound sites, so at 12.57 guess who got called into recovery! It certainly wasn’t the worst melt down we have had in recovery, but it took a fair bit of fast talking to convince him that he couldn’t take the ‘bandaids’ off! The surgeon told me that the surgery went well, the cord was a very gunky – but that was expected after it had been in for 4 years – and that it had come out whole. One of the risks with this surgery was that the end of the tube could break off during the removal and they’d have to go fishing for it. The cord had become a little stuck during the surgery so a second incision was made in his neck to help with the removal.

After Alex had calmed down, we had some stories and a bit to eat, then headed across the road to visit his friends over at little heroes. A big drink of milk and some cuddles and high fives later we headed back to the car and got home at 3.30.
Since he was feeling a bit sore the next day he stayed home from school, but managed to get through the day without needing a nap and was well enough to head to school on Wednesday.

Having the port removed is a big moment for us, (no more safety blanket!) but since we only knew a week out that it was happening we didn’t really have time to worry or stress about it. It feels like we are, hopefully, past the worst of what’s happened over the last 4 years, and the relief that feeling brings is wonderful.

Unfortunately, the relief we feel is not universal. Some good friends of ours were very recently given an MS diagnosis. The sudden, out of the blue announcement that you have a serious medical condition which will now proceed to turn every single facet of your life upside down is horrendous. We have been there and it’s one of the worst things ever. So we want to send love and support their way, and the knowledge that once this horrible shock wears off, and it does eventually do so, things will get better, because the greatest of all gifts is hope.