We got discharged today! Our first official inpatient stay is over and I am glad to have it behind us!
Let me just say we were so impressed with the care during our stay. All of our nurses were wonderful, attentive, and caring! The rooms were beautiful, and had features that really made the stay comfortable like white noise controls, light temp controls, and of course a TV loaded with movies! The “Happy Cart” came around several times and Caleb got to pick toys to keep. The room service choices were great, and funny story, Caleb for some reason took a liking to corn during his stay. With every meal no matter what he ordered he always asked for a side of corn and it was usually the item he ate the most of. He also shared his corn with Iron Man! HA! But whatever he wants… we were just happy he was eating!
There were some parts that went fine, and also some moments that were hard. Looking back at it we learned a lot. We learned how to comfort Caleb when he was scared, and how to comfort each other when we were going crazy. We learned how exhausting and draining caring for another person 24/7 is. We are also very thankful that we had minimal complications with the treatment and that Caleb took everything really well. We realize this may get harder in future cycles, so that fact that Caleb started off so strong is a blessing! We were also happy that Tyler could visit a few times and understand a little about what was going on while we were away.
That’s not to say the whole stay was sunshine and roses. Caleb screams when he’s scared, had an upset tummy for a couple days, and woke up every hour during the night to use the bathroom (thanks hydration!) Our stay looked something like this:
Times Peed on: 5
Pairs of underwear lost: 4
Trips to Starbucks: 7
Movies watched: 18
Hours of sleep: few
Tears cried: many (by all 3 of us)
But, we made it and now he gets a few days to recover before they check his blood and see where his counts are. We are nervous about how weak he will get over the next few days, as the chemo takes a few days to really start working. We are adjusting at home and altering our apartment in any way we can to keep germs away. We set up air purifiers and changed the air filter. We were told we had to vacuum and wipe all surfaces with Lysol wipes daily. He is not able to go out in large crowds. We have to throw food away if it sits out more than an hour because it becomes unsafe. He is very much at risk for getting an infection in the coming days. This would lead to a fever, and possibly land us back in the hospital. We definitely do not want that!!! We will do anything we can to keep him safe! Our next appointment to check blood counts is Wednesday, so for now we watch him closely and wait.