Too much excitement just might kill me!
Our first night in the ward was a long one. Monkey was in a lot of discomfort and had trouble sleeping, so I spent much of the night sitting upright with him in the hospital bed as he slept on my chest.
We were woken by a nurse at 3:45am so Monkey could have a last breastfeed before he started fasting. They had put him on the emergency list for that morning to try to get his biopsy done as quickly as possible.
Unfortunately, being on the emergency list meant he had to fast all morning with no idea or guarantee of him getting into theater.
And it was his first birthday.
We had bought him a little climbing frame with a ball pit and slide – not something we could give him in the hospital! Hubs brought in the smaller presents we had for him – a bottle of bubble bath and a new book. I cut one arm off his “Let’s Party!” shirt to accommodate his IV, and he (briefly) wore his party hat. Needless to say, this was not the way I had wanted my boy’s first birthday to go, but we tried.
The morning dragged. Monkey tried hard to be happy, but he was miserable. He wasn’t allowed to eat, or nurse, or even drink water. He was thirsty and he was tired, but being hungry and unable to nurse he had a very hard time falling asleep. There’s no way to explain to a one year old why the breast that has been so freely available his whole life is suddenly off limits. Having to deny him that comfort broke my heart.
We tried to distract him, spending a lot of time in the ward’s courtyard and playroom, and taking turns to sneak away to eat and drink ourselves.
Needless to say, he didn’t make it into surgery that morning. He wasn’t a true emergency and more important cases came up. I remember telling the doctors that we’d rather wait for a scheduled operation than go on the emergency list again – having to fast him like that was so rough. They agreed, and decided it would be better anyway since they could then get an MRI prior to the surgery to give them a better look at the tumour.
But we still had to fast him. They’d booked him in for a bone scan at 2pm that afternoon. He would be sedated for the scan and so still had to have an empty stomach.
So I put Monkey in the wrap and walked laps around the ward for well over an hour before he finally nodded off, a good two hours past his normal nap time.
Not long after he woke up it was time to go up for his bone scan. Unfortunately nobody had told us that although he would be sedated, that just meant they would give him medazepam to help him fall asleep. Which he tried his best to spit out, being by now thoroughly sick of us shoving medicine in his face every few hours.
Of course the combination of just having napped, being hungry and thirsty and having spat out half his sedatives meant there was no sleeping. We tried for over 2 hours to get him to fall asleep. Eventually the doctor authorized a half dose of chloryl, a different sedative, and I left the room so the smell of milk wouldn’t be so distracting for him. I sat in the hallway and watched through the door and listened to him cry as Hubs walked him up and down, up and down. Eventually he went to sleep, but woke up again when they strapped him down to the bone scan machine. We were able to pat him back down and finally get the scan done, which took a good 40 minutes or so, everyone terrified the whole time that Monkey would wake up again. The radiologist had a late finish that day getting his scans done, but she was very nice about it.
When Monkey came around, I was finally able to nurse him – his first food or drink for the whole day, and it was practically dinner time! Poor kid.
In the mean time, a lot of arrangements had been made. They’d scheduled an MRI for the next morning, and surgery for Friday, which would include a tumor biopsy, bone marrow aspirate and the insertion of an infuser port in preparation for the chemotherapy they anticipated he would need. They also ordered the isotope for an MIGB scan, which had to come from the other side of the country. That would arrive and be injected the following Tuesday for a scan on Wednesday.
And all that was just for the diagnosis. Monkey was also being scheduled for a range of baseline tests to monitor the affects of chemotherapy, including a hearing test, kidney function test and an echocardiogram.
Later that night when Monkey once again couldn’t sleep because of the pain, a doctor authorized oxycodone for him, which is the strongest oral pain medication they have. Thankfully it worked a treat and within a couple of minutes of taking it, Monkey was finally able to sleep.