Last night wasn’t very restful for Cristian since he decided to stay up late and then had multiple interruptions through the night with nurses coming in to check on him. That made Cristian more likely to have melt downs and took longer for him to calm down. Hopefully this was a result of just little sleep, but could also be from the steroids beginning to kick in. Time will tell.
Today went mostly as planned and we were able to relax a little. To help Cristian cope with the situation and everything that has been going on, today we focused on trying to give him control of what we did. With doctors and nurses coming in wanting to poke and prod him, not having the ability to make decisions has been tough for him. So today we did a lot of playing with his toys and were up moving all over the room. Play time is a big part of being a kid so it was very good to see him get some of that in today.
One set of decisions he wasn’t able to make however was taking his meds. This will be a transition for him because he has only ever taken a gummy multivitamin each day and those taste great compared to his new medicines. Luckily we are not above bribery and candy is a powerful motivator. It still took some convincing and we were patient to let him decide when we was ready to take them. We will find a better reward to use as we don’t want to be pumping him full of sugar, but for now we will take whatever wins we can get.
Constipation kicking in
Tomorrow we are set to get some “training” on what we need to do once we are transitioned to home. We are interested to hear about new hygiene habits we will need to develop and how his younger sister will impact things. We have heard already that they doctors do not want Cristian to isolate from friends or other children, so hopefully there won’t be anything too drastic that needs to change for home life.
Tomorrow will also be the day where we find out if we go home, or if we need to stay longer. This is not because of fever (he doesn’t have one) but because of pathology results from this be of the operations from Friday where they extracted fluid from the spine for analysis.
If there are leukemia cells in the spinal fluid then we will stay another day to allow for a follow up spinal tap. This also means that Cristian would need to have 2 spinal taps per week until he has 3 consecutive tests with no leukemia cells. For future spinal taps Cristian will be put under with anesthesia but will not require a breathing tube or have residual puffiness like he this week. That is due to the spinal tap itself being a less invasive procedure which takes less time.
As we are going through this journey we know there will be challenging days and times where we are feeling down about our progress. To help get us through these times we’ve created a page called the “Encouragement Wall” that we can read to help lift our spirits. It would be very much appreciated if you could head over there and add a little note or prayer that we can read later.
A huge thank you to everyone who has reached out to us and left comments on the site. Seeing all of the love and support for Cristian is very heart warming and means a lot to our family. We are very fortunate to have so many caring people around us.
Team Cristian 