21st November 2009 Saturday
Jake didn't feel like eating dinner, which is quite unusual while he's still taking the steroid as it tends to stimulate his appetite. He complained of feeling cold, so we wrapped blankets around him on the couch. When I looked again, he was very close to sleep which is again unusual - he likes to go to bed and have a book read then cuddle while he falls asleep. I took his temperature and it was over 38. Bibi gave him his medicine so we could let him go to sleep, and we took him to bed. I continued to monitor his temperature and it was climbing quickly - I had one reading of 39.2 but I think it was affected by the blankets he had pulled over his head. Further readings were in the high 38s.
Bibi called the hospital but the nurse in charge was busy and she was told that they would return her call quickly, so she came back in to put Kai to sleep. I answered when they called, and they asked whether he was difficult to rouse or had cold hands and feet. If so, it could be symptomatic of septic shock (which is a risk when getting intravenous pushes) and we should immediately call an ambulance as it would escalate extremely quickly. We tried not to panic, and I woke Jake. Thankfully he was responsive and able to converse, even though he was very tired, so we decided to drive in instead of calling the ambulance.
Kai was extremely asleep, and didn't notice when we moved him into the car. This is normal for him - in the first couple of hours after he goes to sleep he is impossible to wake. The rain was torrential but we made it into Emergency and I dropped Bibi and Jake off. I decided to take Kai to Granny's (Dianne's) house because we were told that the entire hospital was full and there were no beds anywhere, so Jake was probably going to spend the night in a cubicle in Emergency before a room could be found for him. I wanted to return quickly to help them.
Bibi kept me posted through the night - they were moved into the Intensive Care Unit (ICU) at about 4am because the doctors were concerned about his low blood pressure so they gave him a new drug for it and wanted to monitor him closely for any possible adverse reaction. She ended up getting about 2 hours of sleep. I stayed at Granny's house rather than driving through the downpour again while extremely tired and stressed, and also so I could be with Kai when he woke so he didn't go to sleep at home and wake up at Granny's without any explanation from us of what was going on.
Doug
22nd November 2009 Sunday
I had breakfast with Kai then went home to get the things we'd forgotten in the first trip and returned to the hospital. Jake was still in ICU, so I sent Bibi to the parents' room in Oncology to have a shower and a nap and sat with him while he watched the Spiderman movies. Three in a row!
At about 5:30pm a bed was found for him in Neuroscience - 8th floor instead of the 6th but exactly the same floor plan. Weird being in the same room only different :-)
Doug
When we finally got up to our room Jake and I lay down. Doug tucked us in and left. Jake and I slept the rest of the day and late into wed .. :)
Bibi
24th November 2009 Wednesday
He's been in for 3 days now and will hopefully return home by the end of the week. They have cultured a bacteria in his blood, so we get to go home when he is able to get by with only one dose of antibiotic per day, at which point the HACC nurse can give it along with the Gancyclovir when we have our daily home visit.
Doug
25th November 2009 Thursday
We were allowed to go home today but it took ages. I thought we were going to be quick and be home before lunch but by the time we coordinated with the pharmacy, nursing coordinator and doctors we ended up getting fed up and left at 5pm even though we did not have full consent. Doc Tiedermann likes to have the last word.
Bibi