It appears that we may be released from the hospital tomorrow. We have to see if Caemon makes it through the night without supplemental oxygen. If he does, tomorrow afternoon, we make our break. It’s just in time too. We are all growing weary of this room. Because Caemon came into the hospital with a cold, he has essentially been in quarantine. His care providers must all wear masks when entering the room, and he cannot leave the room without wearing a mask himself (and since he won’t wear a mask, this means not leaving the room). This makes for a very small world for an almost-three-year-old who is accustomed to free ranging around our home.
We all need a little normalcy right now. Sure, we’ll be administering chemo once a day, something that we never imagined would be part of our bedtime routine, but we’ll also have no tubes, bells, beeps, alarms. We won’t have strangers waking us up throughout the night to take vitals, administer more meds, or change diapers. After being here for a week and a half, it’s almost difficult to imagine the quiet.
It’s all going to take some adjustment, of course. We’ll be limited in what Caemon can do. We’ll have to be extremely diligent about staying away from anyone who may be ill because his immune system is so compromised. Because his platelet levels will continue to be low due to the chemotherapy, we have to be more cautious about the types of activities he engages in (small cuts and bruises can be extremely harmful and leave him at risk of severe bleeding). On top of this, we will have weekly blood draws, weekly visits to UCSF to go to the oncology clinic. However, it’s all such a good deal, honestly–to be able to do this at home, to be able to see people and relax a bit–these things have got to do wonders for one’s spirits. I’m hoping that is the case for our boy.
Our next stay in the hospital will be a much longer one. When Caemon has his bone marrow transplant he will likely be here for six to eight weeks. This will bring with it its own challenges, but for now, we get to prepare, to revel in the sweetness of home for a bit, to feel a little taste of normal. We’ll leave thinking about future visits for a later date because the Marston-Simmons family has some living to do.