This weekend’s trip was a success on all fronts. We took our PN show on the road, away from the comfort and familiarity of home and the security of the Route 9 to Children’s Parkway and came back without a hitch.
Making our trip even easier was the message from Ellie’s surgeon that we got when we asked him about going away for the weekend:
“Go to Maine – it’s not that far!
I have my cell phone on.
Any crisis and Maine Med is fine – I know the folks there.”
If that doesn’t make you feel bold, nothing will.
Apart from Ellie being exhausted and going to bed tonight at 6:45 she seems to be doing just fine. We will watch her very carefully for the next two or three days to make sure that her cousins didn’t give her a souvenir infection but it seems just fine for now. Sometimes it can take 72 hours for a bug to bloom in her. We felt her forehead a lot today. Lots of false alarms so far.
Abby and I even left Ellie with my family on Sunday and went to lunch for the very first time. We hadn't been away from her since December when the nurse came early one night and we went Christmas shopping.
We are already thinking about the next opportunity to head north how we can make it even easier the next time around and what we need to do to stay for more than one night.
The biggest trick is getting everyone up to speed on the little things that we do all day long as part of Ellie’s preventive care. Particularly interesting is how to teach my brother’s sons who are very precocious 3 and 4 year olds about infections and the need to wash their hands. On one hand, you need to tell them that they need to wash and why but on the other hand, you can’t tell them the full story for fear of scaring them and making Ellie and her tubes seem scary. I think that we reached a happy medium by making hand washing into a game for them.
If only we could Purell the little buggers from head to toe….
The other trick is adapting the routines that we have to a new arena. Simple things like changing an ostomy bag or even a diaper are just a bit more difficult without home court advantage. We are learning the new ways of doing things and fortunately, my sister has a beautiful brand new house that has lot of clean spaces for us to use.
Summer is coming and we have a whole lot of recreating to do to make up for last summer. We have a key to my sister’s house now to go along with the key to my brother’s boat.
It will be tough to stay away.
1 comment:
So glad to hear everything went well with your trip!
I get it about Purell. Owen was 3 when Luke was waiting for heart surgery and I disinfected him ALL THE TIME. If he looked at me wrong I washed his hands. He'll need therapy some day, no doubt. Glad you guys handled it better ;)
Post a Comment