It took us two hours to get everything ready for our vacation since Michael had not been able to pack the car the night before like he originally planned. He was helping his friend, Brian, with a costume he made for a Special FX Makeup Event and didn't get home until 2am! I didn't mind getting to take our time that morning and I did her treatments while Michael packed everything he could.
We left at 8:25! I sat in the back with Emma and, as you can see, there was a bunch of stuff for her that I needed in the seat next to me- obviously her ventilator, but also her suction machine, caddy with sodium chloride bullets, and her pulse ox monitor. I also brought my own snacks, notebook, airplane neck pillow that I got for Christmas from the Ronald McDonald House in Michigan, and Ziplock bags in case I needed them to get sick into while sitting in the back during all the super windy mountain roads. I am very happy to report that I never needed to use them!
First stop- breakfast at Wawa before getting on the turnpike! |
Second stop (for 40 minutes at Noon) in Tifton, GA. Jam packed with the third row of seats folded into the floor area. |
Emma's cute "the sun is so bright" face! :) |
Diaper change & then I also took Sasha on a potty walk. We plugged the ventilator charger into the car so we didn't run out the battery packs. |
"Hey, where's my salad?!" |
Mountains!! |
Made it!!! I love this part of Daylight Savings when it stays sunny longer. |
These are the few pictures I got on the way home on Thursday, March 28th. She only took two naps on the way back, but we did make more stops, but each one was less time. That morning we left at 8:30 and got home at 7:15. Just about exactly the same times as it took us to get there, meaning it took us an average of 11 hours for an 8 hour drive. Good to know, and better than the 12 I was estimating!
Bye bye, cabin! |
Stopping for another diaper change & leg stretches. |
Emma and I are already looking forward to the next one! I mentioned it to Michael already, maybe going somewhere for his birthday, but he doesn't seem as excited. I think that's because of how he was the one doing all the packing. He does do more of the work with Emma, but I think part of that is because I am the one with the full time job (and insurance) so he is home with her more.
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Oh, another thing I wanted to mention, that hasn't really been an issue yet, but is not related to our vacation. This morning (April 5th) at it was thundering and lightning so much around 6am, so I went through a mental check list with Michael of what I would need to do if the power went out while he was gone for the day. I say it hasn't really been an issue yet because one time the power in half of Emma's bedroom went off randomly -no storms around- but all Michael had to do was flip the fuse in the garage. So my mental list from this morning included:
1- Plug the ventilator into the huge black battery on the ventilator stand with the XLR cable because that one lasts 24 hours (compared to the regular 6 hour Sprint pack that we usually use).
2- Hook the oxygen tubing to the oxygen tank since the power going off would turn off the big, blue air concentrator that we have in her room. Although, Michael reminded me that we still have the portable air concentrator that we got from the medical supply company for our trip, but I don't know how to use it. I was at work the day the respiratory therapist delivered it and explained everything to Michael. Just another note about him taking care of about 70% of all of Emma's medical care.
3- Put an HME on her trach since the humidifier would turn off.
At the time, it also said there would be strong rain and lightning storms between 2 and 4pm, so I needed to be prepared. If the power went out while Emma was needing her lung treatments or anything that has to be plugged in and does not have a battery, then I would need to get the generator out of the garage and put it on the back porch. Luckily, I just checked the weather again and now it's showing clear, beautiful skies for the rest of the day. Phew!
Also we were lucky that the last hurricane did not really affect us in Orlando, and we did not lose power. (Hurricane Michael which destroyed the Florida panhandle so terribly in October 2018- it was stronger than Katrina at landfall! I cannot even imagine that..) We got the generator last April before Emma came home from the NICU, but luckily we have not needed to use it yet. On a side note, we are on a medical program alert list where each summer we get paperwork and information about what to do or where to go when a really bad hurricane is coming, for people who require a lot of medical care. We were told we would stay at the hospital. I'm not sure how much of her equipment we would need to bring considering the hospital would have everything, but I really hope we never have to find out!! There's always something to keep praying about, isn't there? :)