This is how life looks for mommy and daddy while Nadia is in isolation.
We are on a 2 day repeating schedule. Let’s start by daddy waking up at the hospital. We wake up at about 8am every morning. There is no sleeping in. One of Nadia’s meds starts at 6am and finishes at 8am and IVy starts beeping to let us know she is done. We have to page a nurse into the room to stop the beeping. The commotion wakes up Nadia and there is no way she will go back to sleep when it is bright outside. She usually sleeps through the night and goes back down after disturbances, but not at 8am.
Then it is breakfast for Nadia and the nurse does vitals. Usually some time before 9 am mommy shows up and takes over, letting daddy washup, change, and have breakfast.
Then it is a bit of play time. Sometimes Gloria, the cleaner, comes in to do her bit. Nadia LOVES her. Gloria is awesome.
There is a gap between medicines between 11 am and 1 pm right now (this changes as Nadia’s meds change). So at about 11 am the nurse disconnects Nadia from IVy and then it is ducky time in the bath.
The daily bath is pretty important not only to keep the immune compromised child clean, but allows us to get a good look at all her skin to see if any transplant-related rashes are starting. (Happily, nothing to report here!)
Shortly after bathtime is lunch for Nadia. Mom and dad take turns going for their lunches.
Between 1:30 and 2:30 Nadia goes down for a nap if we are lucky. Sometimes mommy and/or daddy has a nap too in the room (this is an uncomfortable thing to do on our ‘love seat’ using the chair as a footstool). Rarely we watch a show together in the room, sharing headphones like teenagers on the bus. Sometimes Thor sneaks away and does some work.
Between 3 and 4 pm Nadia wakes up in here. It is play time, snack time.
The fresh linen cart comes at about 4pm and we change bedding daily to keep Nadia’s room as clean as we can. We have been told to take everything from the middle, not the top or bottom. Strangely, daddy has always had this habit in stores. The assumption being that the front items are handled by everybody and are obviously gross and the back items are at the back because someone hid them there after damaging them. Or sneezing on them. Or <don’t judge me you think it too!!>. 🙂
5pm Supper arrives. We feed Nadia and mommy and daddy take turns eating supper.
Sometime after 7pm daddy leaves for the apartment. On the way there he picks up groceries and run errands.
As soon as daddy arrives at the apartment he starts laundry. There is typically 3 loads to do. Nadia has many wardrobe changes and her bed changes every day (we bring in some of our own linens too). If food gets on her clothes (and it does all the time) we change her. We consider this ‘food left out’ so it has 2 hr time limit. And we wash poohs and jellys that hit the floor.
And of course there are the typical ‘home’ duties. Cleaning etc. Sometimes prepare the next day’s supper. Daddy will do some work. Pay bills. Update blog. Etc.
And then decompress with 20-40 mins of drivel on TV.
Bedtime is ‘laundry limited’, meaning we can’t go to bed until we put the last load in the drier. We are lucky to get into bed before 11:30pm.
6:30 am wake up, wash up, eat up.
Pack bag, including groceries and clothes for Nadia and overnight stuff. Pack supper. Take a frozen supper out of the fridge for the next day. Get to the hospital just after 9 am to relieve mommy.
Repeat the day. Mommy leaves for the condo and daddy plays with Nadia (meaning he crawls in the crib and she just uses him as a balancing beam) until about 8:30 pm at which point he puts her down to sleep. She usually amuses herself until about 9:30. After she is asleep daddy changes into his pajamas, brushes his teeth, maybe blogs a bit, and goes to bed as early as he can.
The nights at the hospital are unpredictable. Some nurses are AWESOME and make great efforts to be in the room before IVy’s alarms start going off. These nights are very restful. Other nurses, and sometimes even the best nurses get caught up in other patient’s rooms, one of the meds ends and the IVy starts demanding attention. So we have to wake up and page the nurse and silence IVy. It takes at least 5 mins for a nurse to show up (remember they have to scrub for a min and put on a gown before entering the room) and the silencer only holds for 1 min. The bad nights are when we have to do this for every med, which is about 5 times a night. The worst nights are when air gets into the lines and IVy stops the infusion and starts beeping. I think the worst so far was over an 8 hour ‘sleep’ I had 8 interruptions.
8 am Nadia wakes up.
Repeat two day schedule.
Mommy’s schedule is similar to this. All times are approximate. And there is changes of plans and flexibility. But this is the bi-daily grind.
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IVy at night, lighting up the room. Biomedical Engineers reading this blog – you can do better! Lights that dim at night? Radio alarms to nurses instead of disturbing patients and parents? It is clear the designers never slept in a room with an IVy.
Growing like a weed
The cuteness
Hmm. ‘very tweet’. How appropriate for twitter. 😉
