Today is pre-op day in DC. They will take some blood (dreading that, of course) and we'll meet with anesthesia. Hopefully it won't take that long. I'd like to be back home by mid-afternoon. We'll see.
So, Monday was scheduled haircut day. Yay! I'm totally digging this! Kim came out again and cut all the kid's hair this time.
Cooper finally realized that haircuts don't hurt. YAY! So, he was great and it was a totally different experience than having him cry and fight the whole time.
And here's what Harlie's looks like from the back.
It was getting long again and I think she looks better with her hair short. And it is SO much easier for trach care to have it off her neck a little. Especially considering she'll be in a cast and we won't be able to do much with it anyway. I might even have her go shorter next time. I think Harlie likes it better, too.
I am loving having Kim come out to our house. She comes at 3:00, and on Monday Harlie had a doctor's appointment at 4:10. She cut all their hair and then I took Harlie to the doctor - no problem. Sweet!
I have to go and get ready for the day - but I wanted to share one more thing...
I was thinking about our trip on Sunday to DC and the fact that I would have to pack a ton of stuff for Harlie to sleep for one very short night at the Ronald McDonald House. So, I thought maybe we should try having her sleep in an HME (heat and moisture exchanger),
which would mean we would have to take WAY less stuff. I had read that some kids sleep in the them instead of using a trach collar with the heated humidity system, which involves an air compressor (makes a lot of noise) and a heater and a bag of water. She's not on oxygen - regularly - anymore. So, the other night we tried it out to see how it worked.
Here's the heater, trach collar and bag on the IV pole and all the tubes are connected to an air compressor and oxygen concentrator down the hall...
We love it! She is no different in the morning than usual (the mornings are always junky with lots of suctioning from her laying down all night). And the night is SO much quieter! What a difference! Plus, I really think that she is more comfortable. She is so hot-natured and to have that hot air blowing on her neck all night had to have been a little uncomfortable.
For some reason, having her sleep this way feels so freeing for us. It just seems a smidge closer to "normal." I don't know why, it just does. And we are so excited about it!
Okay, time to run. Lots to do... Have a great day!
~Christy
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Drive safely, hope all goes according to plan!
xoxo
Good luck today!!! Glad you had the HME epiphany! Traveling lighter will be so much nicer for you. xo
LOVE her hair!! :)
See you tonight!
That's great that it seemed to work well. One little tip, pre-moisten the HME with a few drops of saline. It helps make it more humid from the start. You're inspiring me to try it again. It's been a year or so. It would be GREAT! Amazing, really what small things can make such huge differences. I can't believe you've gone through pre-op. I'll be thinking of you guys! It'll be the time we are closing on the houses and moving, but I will be thinking of you and checking in to see how things are going. (((((HUGS)))))
Have a safe trip. Good luck on Monday. Lots and lots of prayers will be with Harlie and you. I think of you all very often, and pray for the best. Love Sue from Pittsburgh
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