Day +4: The End of March? Seriously?

The last day of March. Seriously? Where has the year gone?

This year has both dragged on and flown by for us. There's been barely any time between Sean's diagnosis to today; less than 2 months ago, we were given the life changing news that Sean had Severe Combined Immunodeficiency. And here we are, today, Day +4, being 4 days after lifesaving treatment to cure Sean of the disease.

My head spins every day with more and more information about the disease, the cure and all the measures our medical team is taking to help Sean recover from the transplant. And considering how much information we had already been given, it is amazing that I am still able to cram in all the additional bits and pieces of information that we are given each day.

Jonathan and I have marvelled at how quickly and slowly this year has gone by for us. Each day feels like 30 hours long; no sooner have we closed our eyes before the next day begins. All the days have blurred together in one big malleable ball of days, and it often surprises us when 7 days have passed and we've been through another week.

The weeks seem equally long - they feel like they stretch on for more days than the standard 7. When we are asked "When did (insert medical procedure) happen?", we have to focus to think back to exactly it did happen. For example, we get asked a lot when Sean was in hospital to have his central line inserted. For those who are keeping count, it was just over 3 weeks ago. But for us, it doesn't feel like 3 standard weeks. It feels much much MUCH longer.

And then, we reflect on the 3 weeks that have passed since the central line was inserted, and wonder where the time has gone. It is quite surreal that it was only 3 weeks ago that we were holding our little bundle of crying baby, recovering from his first general anaesthesia after acquiring the central line.

Each month that has passed in 2012 has felt like an eternity. But, here we are, on the last day of March, and we are trying to catch our breath. So many things have happened in the these 3 short months, and we are left amazed by the way time has flown for us.

We only hope that the next time we blink, we are 12 months down the track, and Sean is declared cured of SCID.

What made us think about how this year had travelled for us was the fact that today was BBQ Day for the parents and carers in C2W. The last BBQ Day felt like it was yesterday, but in real time, a week had passed by and Patsy was cooking the yummy BBQ spread again.

Our cheeky little man had to have a blood transfusion today, as his red blood cell count was well down. The doctors were expecting this, so this was all part of the journey. The packed cells were ordered and transfused into Sean over a number of hours. In addition to the transfusion, Sean was given a drug called lasix, as blood transfusions may lead to hypertension and this drug would help treat it. One of the side effects of lasix was that it made Sean pee a lot more, so we were changing a lot more nappies all day long.

With Sean being a bit out of sorts today, and obviously bothered by the pain that was slowly presenting itself, in part due to the developing mucositis, the medical team decided to increase Sean's morphine. We were assured that the morphine was just a faint trace of pain management dripping in the background, and it was highly recommended that we agreed to the increase to help Sean cope with the pain. The faint trace was not enough to get him hooked or anything - just enough to dull the edges of any aches and pains that may arise sharply. We agreed to more morphine. We hate seeing our little man suffer, and anything that would help soothe him was good for everyone involved.

Daylight saving was due to end at 2am tomorrow morning, which meant we would gain an hour as all the clocks are set back an hour. In the past, back in those days before children, I had always looked forward to the end of daylight saving - that extra hour in bed was a tantalising reward for my hectic lifestyle and my oft mistreated body. Since children came into my life - first Mina, now Sean - there is no such thing as lying in bed for an extra hour at the end of daylight saving. I well recall Mina coming into our bedroom at 5am, saying she was awake and wanting to play. I don't know how Sean is going to handle the end of daylight saving this year - last year, he was too little and was still getting a hang of sleeping through the night to count. I hope Jonathan has a good night's sleep tonight. An extra hour would do him good.