6/16/16 HOME!

First night home felt amazing! Our own shower and bed felt so wonderful. 😊

I can't recall the last time I slept through the night so of course I woke up at 2am to check lil man and then of course started running through everything to do and check in my mind. Was nice to fall back asleep and not worry about nurses or anyone coming in to check things. Cole woke up at 5:30am and wanted to build Legos, but fell back asleep and got up around 9am. Steroids still making us a bit grumpy but it's getting better.

Watching him sleep so peacefully in the comfort of his own home was so heart warming and relaxing to see.

So we set up a "treatment station" to help organize everything we need to do each day. Numerous medications morning and/or night, cutting pills, treating and caring for the PICC line (must be extremely careful), breathing exercises to take care of our lungs, etc. means we need structure and organization. Of course anyone that knows me knows I love organization and structure. :-). We must also closely monitor his breathing, watching for fevers and just overall how he's doing throughout the day.

We certainly aren't complaining about everything we have to do for treatment because we get to do it at HOME so we are very fortunate. Feeling just a little anxiety about our appointment at the HEMOC clinic tomorrow..only because there may be a chance they have some of the pathology reports back, but they said it could take a week or longer so it's not likely they will have anything. We're as prepared as we can be for whatever they say though. Otherwise we anticipate the appointment going smoothly - X-ray, changing the PICC line dressing which must be done weekly, and checking overall vitals. Hopefully a brief appointment.

Thunderstorms making for a lazy and relaxing day so looking like a cozy movie day which is perfectly fine in my book.  😊