Posted 6 months ago Less than a minute to read
Life in 24 hour blocks
It is quite disorienting living life in alternating 24hour blocks. You wake up in the night not quite sure where you are, and you pack and unpack an overnight bag every day. Rory and Colt get a day managed by mum and then a day managed by dad. The 24 hours on the ward is spent passing the time with Rory; reading , playing games, talking, watching tv and taking care of his needs. The days are long and the nights are awful. The 24 hours in the Waldorf are spent cleaning up, cooking, supporting Colt to do some learning and escaping the apartment to go walking. We are sound asleep by 8.30pm.
Today is Rory’s fifth day in Starship. His methotrexate level at 72hours (3pm Saturday) was 0.21. It needs to be 0.08 at 96 hours (this afternoon) for him to be discharged tonight. If the level is close they may do a re-test at 7pm, otherwise the next time his blood will be taken is 6am tomorrow. This round of methotrexate has been hard on Rory. He is very tired, depressed and has little appetite. He has been retaining a lot of fluid so swelling in the face and limbs, and his blood pressure has crept up. Yesterday his weight was 6kg more than it was on Monday. After he had the furosemide he expelled 4-5 litres in a couple of hours. He has needed furosemide every day. Sean and I are concerned his kidneys are not working as well as they were six months ago. Rory likes to lie on his tummy to sleep so we have had problems with the port and line malfunctioning as they have been cut off. Rory cannot hear the pump alarm at night so Sean and I get up and down, and up and down, to buzz the nurse to come and fix it. A couple of times in the early morning Rory has fought the nurses, telling them to get out he’s tired and wants to sleep, as they try and fix the line or take his blood pressure.