The day after Christmas we took off to Sacramento to spend the week with my family. Other than family, we didn't tell anyone that we were coming out--sorry! We knew we were bringing Kai and that our time would be very limited. Shin and Heather drove with us out, but flew back at separate times. Shin had to be at work for New Years, and Heather stayed almost a week longer in Lake Tahoe to help her mom move.
It ended up being very fortuitous that they came with us. They stayed the night and we all got up very early and we were on the road by five am. It was still snowing and we dealt with snow storms through the entire drive, so it was slow going. Although the drive was slow, everything went well until we were headed up Donner Pass, just before the Truckee checkpoint for chain control. We had stopped in Reno for gas and at that point I turned up Kai's oxygen to go over the mountains. He about about a quarter of a tank left, so I knew it was getting low, but there should have been several hours left in the tank.
We listened to the road condition update on the radio and they had chain controls, but the passes were still open; they were calling for three hour delays at the Truckee checkpoint. Not seeing much traffic, we forged ahead, only to get caught up in it later on. We had been creeping along for a little over half an hour when I noticed that Kai was starting to turn really pale and dusky. I checked his pulse/oxygen machine but it said that he was still in the 90's for his oxygen saturation. Knowing that wasn't right (we have since discovered that the cord to the machine is not working properly), I checked his tank and found it empty. Crap. I hadn't taken into account the fact that when I increased his oxygen rate, that the tank would empty faster--even still, I should have had longer in the tank... I changed tanks, but by that time Kai was even duskier and starting to get upset like he does when he can't breathe, which means that he had an airway collapse. J went into the far left-hand shoulder (the right was where people were chaining up) and just drove, trying to get to the checkpoint where we could get some help. We couldn't turn around (one way highway), and there were no exits. We had to go forward. Kai needed suctioning, but the last time I suctioned had brought up some thick secretions and I was afraid of plugging his trach (having been without humidity for over ten hours). Kai was going into all-out panic mode and I did an emergency trach change. He went full-on blue and J stopped in the middle of the lane, hazards on (we weren't really moving anyway and we couldn't pull over), and came out to help me. We pulled out the ambu bag (basically a bag where we pump breaths into him manually) but he was already calming down and returning to a normal color. Thankfully, Zuri was asleep in the back when Kai went blue, and she slept through the entire incident.
To help lighten the mood and shake off nerves, we joked that the best way to get through traffic is to have Kai along, since we shaved a good two hours off our wait time by driving on the shoulder to get help. We resumed our trip and had no further incidents.
Since we brought Kai along with us and we didn't have a nurse, J and I took shifts to take care of Kai at night. J would go to bed with Zuri around seven, and I would stay up with Kai until three, when J would come in and relieve me. I would sleep until eight or nine, so consequently, I didn't get much sleep all week. That first night I tried to sleep in between all the cares and stuff I need to do with him, but his vent would alarm so often that it made sleep impossible (when he is asleep he has a pretty sizable leak in his trach that causes a lot of alarms; positioning helps, but does not stop it. Thank goodness for nurses! I couldn't imagine having to do this all the time without them--I would be a basket case!
Once we settled in at my grandparents house, things went smoothly. We didn't get to see my brother Sean, or my great aunt and my cousins on my grandpa's side (who were all supposed to come over), but we did get to see my great aunt and uncle and some of my cousins from my grandma's side (which was a nice surprise). It was their first time meeting Kai. Unfortunately, I didn't get any pictures.
We had our "Christmas" dinner Friday evening, which Zuri slept through. She was so tired that she slept for hours and there was no waking her. Unfortunately, it also put her off her schedule for bedtime, but we did manage to get her to sleep eventually. The little stinker managed to get J's iPad and was watching
My Little Pony under the blankets.
A precious moment with Zuri and Kai. Zuri went over to Kai, took his hand, and told him that she loves him.
Playing with Uncle Shin
A rare moment: J reading. He had some reading to do for work, and this was his attempt at getting it done :-)
Chillaxing
Laughing as Daddy rocks the chair. We didn't bring his highchair, so this was the substitute for sitting upright--we kept his stroller out of the way because it takes up a lot of room
Getting sleepy and cuddling with his blanket
Still her favorite game with Aunt Emmie
They are in almost identical positions
We were at the bank and Zuri fell asleep on Emily...
...and stayed asleep through the car ride back home....and into the house...
...and even several hours later...She was one tired girl!
Present time!
A Japanese kitkat! It was pretty much the same as an American kitkat except it was white chocolate instead of milk chocolate, but still, fun!
A Stitch hat!
Kimie was unable to make it out this year, but she sent some presents with Emily and Zuri got this beautiful kimono! You can see how much she loved it. :-)
Kai got some presents, too!
On our last night in Sacramento, Emily made us an authentic Japanese dish--sukiyaki bowl. It had sukiyaki beef, mirin, cooking sake, soy sauce, konjak strings, ginger, green onion, and more! Emily seemed to adjust to being back in the United States pretty well. She did want to go to the mall just so she could experience a mall without being stared at (lol). Her stomach rebelled from all the American food, however.
It was very yummy!
Getting ready to leave. We got up early once again to head home. This time Zuri was still sleepy and wanted to cuddle up with Emily (who was also really sleepy). Emily flew back to Japan the day after we left.
It was really great to be able to spend some time with her. It is funny, but the first few days we kept saying the same thing at the same time. We are across the world from each other and we still do things like that! :-) Emily and I were able to take a few hours and get away as well. We saw
Les Miserables, which turned out really amazing, for the most part. There were some quirky camera angles and I would have cast someone with a stronger voice as the adult Cosette. Nothing can beat the Broadway musical (which I have seen multiple times), but I enjoyed it. For days I have had the music stuck in my head. I am almost to the point of breaking out my old cd's and just listening to it.
Sunday we went to church as a family--meaning we brought Kai along. It was an adventure, with J pushing the silence button every 30 seconds to make sure it didn't alarm. We were originally only going to go to Sacrament meeting, but we were personally invited to attend the other meetings by the teachers, and Kai was contentedly sitting in his stroller, so we stayed. The bishop came up to us just before the third block and with tears in his eyes told us how amazing we are and how what a special boy we have in Kai. He has been following Kai's progress through my grandpa, who keeps him informed.
It never fails to touch my heart to see how many people care about us and Kai. Sometimes we feel alone in this journey, simply because we are surrounded by people with "normal" children and they just don't get how structured we need to be and how time consuming things are with Kai. It is nice to be reminded that others do care and are willing to extend their love, understanding, and empathy to us--even people we have never met. The world feels a little smaller and a little brighter.
As time often does, it went by too quickly. It seemed like we just got there when it was time to leave. We had fun, but we also looked forward to returning home--home to our new house; home to a good night's sleep (well, to a more normal sleep) with nurses care for Kai.
The way home proved completely uneventful (hooray!), and we found that travel with Kai is possible. We discovered that he gets carsick, so feeding him in the car is not advisable (even Pedialyte--which he was able to stomach in very small doses), and as long as we make sure he has a full tank of oxygen (or rather, not empty) then he travels much better than many other children I have been with.
We are hoping to make another trip out to California this summer, so that we can visit with family and friends as well as spend some time at the beach. We had such a great time over the holiday and it was really nice to be able to all go as a family.
