Friday, April 5, 2019

Roadtrips & Preparation

   This is the last blog post I have about our vacation to North GA with Emma from the end of March. We got up at 6:25am on Friday, March 22nd to start getting everything packed and ready to head to the mountains for Emma's first real vacation! Our time in Michigan definitely doesn't count since she never left the hospital. And although Michael and I got to explore Ann Arbor on a handful of days and go on some dates, we still referred to it as a "medical vacation". We were only there for her big surgery with Dr. Green to get 3D airway splints put in to keep her trachea and bronchi open.
   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.
    Third stop, also for 40 minutes in the McDonough, GA area, for lunch at Panera and more baby leg stretches! I was also doing my own stretches like lunges, squats and jumping jacks before getting back on the road. Emma did super well on the ride and did not get crabby much from sitting in her car seat so long. I was surprised that she took four naps on the trip, but she must have needed it.
"Hey, where's my salad?!"
Mountains!!
Picking up our key and map to the cabin after the office was closed. There are about eight cabins for rent at this spot, but none of them are pet friendly, so we haven't been able to book any of those.
Made it!!! I love this part of Daylight Savings when it stays sunny longer.
  We unpacked the car (except for the stroller which we left in the back), and Michael did Emma's treatments while I got things settled, like hanging up my clothes, and putting items in the drawers and the bathroom. Then we went to Walmart after letting the battery packs charge more since we needed groceries for the week. This was when he also bought a surge protector for the cabin since there was a lot to plug in and not too many outlets!

  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.
***
   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? :)

Tuesday, April 2, 2019

Emma's First Vacation

   About half of our time was spent in the cabin, which I suppose is good because then we get our money's worth for staying there! I did really like the size of the cabin and kept saying it would be the perfect size for us. I estimated it to be about 500 sq ft (it was smaller than the house we rented when we lived in California six years ago, and that was 826 sq ft), but couldn't find the exact number since we didn't know the address. There was a loft upstairs with twin beds and a second bathroom, which Michael's mom used while she was staying with us. Our room was a good size on the main floor, with a king size bed, and there was a triangle shaped jacuzzi in the corner! The front porch wrapped around half of the cabin and as Michael noted, "The water pressure is really good." Then he added, "Oh geez, that sounds like something your dad would say." He is right about that, haha!
  The front view from the mile long "driveway" road that I walked down with Sasha twice during our week there. Sasha is good about listening to us, and immediately running to us when we call her, so we felt comfortable letting her outside without her leash to use the bathroom each time. Of course, we went outside with her. We definitely did not let her roam on her own.
  Good morning!! I love this photo of her so much. So cute and happy to be on vacation. However, when we first brought her into the cabin the night before she looked scared and suspicious. I'm glad she quickly warmed up to it. She seemed to like looking at the vaulted ceiling, or maybe she was counting all of the dark knots in the wood planks.
   Emma usually has physical therapy for 30 minutes every Monday at our house, with Lara now that Grace had to move away. But since we were on vacation, we just worked with Emma ourselves, sitting her up more to balance. She's been doing better lately, but still thinks it's so funny to fall back and will purposely put her hands behind her head and start laughing right as she falls back. I always try to catch her right at the beginning of the fall and tell her, "Nooo, you gotta sit up", but it's hard not to laugh because of her huge happy face.
   Driving to Dahlonega after Michael's mom arrived! One thing that was a little more difficult was when Emma needed suctioning while we were driving on all the switch backs up and down the mountains. I kept trying to look out the front window as much as possible while suctioning, to avoid getting nauseous as I was sitting in the back seat, but also had to keep looking down at Emma's trach to make sure I wasn't pushing the catheter too far down each time. Everything was fine; I never got sick!
   One of the places I wanted to go for dinner while we were in Blairsville was Rib Country. Last time, when Michael and I were in town for our Babymoon, we went to a place called Jim's BBQ, which had really good cinnamon sweet potato fries, but I like trying different places. I got the ribs, which were very good and "fall of the bone", as they should be. We ended up ordering the food to go in the parking lot since it was raining a lot that evening and we didn't want the ventilator getting wet. Emma was "talking" (making her baby noises) a lot in the car while we waited, so I got a video of that.  :)
    The first night at Walmart near the check out line, they had the bin of $5 movies. Michael saw Mockingjay Part II (from the Hunger Games series) so we grabbed that since we didn't have it. It rang up for only $3.47, woohoo! Michael's mom hadn't seen it so we watched it with her one night.
   Emma in her mountain trail jammie pants that I couldn't pass up for $3 from Once Upon a Child (resale store). We brought a lot more clothes for her than she ended up wearing ~ something to remember for next time. She's in pretty small sizes still for being almost two years old (6-9 months in shirts, but some 3-6 month onezies and dresses still fit her, and 0-3 months in baby pants), so they didn't take up much space in her unicorn backpack! When we tuck her in on colder nights we usually just put her in a long sleeve onezie or just jammie pants, and cover the other half of her body with a fuzzy blanket that she usually kicks or pushes off anyway.
  Emma and I wore our Appalachian Trail shirts the last day. To be honest, I wore mine four days in a row because it was sooo comfy! Two of the colder days I had a long sleeve shirt under it, so it didn't get stinky. But it's definitely been washed now. ;)