Up In the Air

You ever had a day when you could just scream and throw a tantrum? I did this morning. I didn't scream, but Jojo's caregiver saw a side of me that I wish would just stay hidden in a locked box. Without going into details, it's one of those days when there's just not enough hours or enough of me to do the things I need to do (some of them not related to Jojo). I guess I did scream, silently, "Please God, I just need a break!" And He sure gave me one.

At around noon, Ms. Frances and I hauled Jojo to Alexandria to pick up his new manual wheelchair. But, we had to turn around because I forgot the suction machine! Yup, that's our life alright, everything is rushed and last-minute. We applied/ordered a manual wheelchair in early January with the hope that we would get it in time for our trip to Disney World. And we did...we got it today and we leave on Monday. But, not enough time to make sure that it is the right fit for Jojo and that he will be comfortable in it for the long drive and for the whole trip.

And so we got to our appointment. Brady left work to meet us there. We saw the wheelchair with its grasshopper green color frame that Jojo decided on. It looked impressive, the back almost lay flat if you reclined and tilted it all the way. But in this almost-flat position, the chair is really low and therefore the handle/push-bar in the back is also low. I am 5'1'' and I just barely grab the handle. Brady is much taller than I and has back problems, so I don't think I'd want him to push this chair too much. Anyway, Jojo was put in and out of the chair a few times to make adjustments to the chair. In the end, he just did not look comfortable or satisfied with the wheelchair. Now, we never expected the wheelchair to be a perfect fit the moment we got it. It took major adjustments before we got Jojo's power chair the way we wanted it, and we LOVE Jojo's power chair. I'm sure we can make this new wheelchair just the perfect fit for Jojo, given the time. But we are SUPPOSED to leave this Monday.......................

Supposed to leave on Monday. Here's the "break" that I asked for this morning. During the wheelchair-fitting appointment Brady commented that Jojo was red in the face and felt warm. His heart rate was also up a bit. OMG. Here we go again. By the time we got home around 4pm, Jojo had 103 temp! He was fine all morning. Chatty. Satting great in the high 90's. Heart rate in the normal range. And at 4PM he was hot, still chatty, heart rate going into 170, still playing on his computer, lung sounds not bad at all. I did the "sick protocol" of Ibuprofen, cough assist, bipap, breathing treatment, continuous feed, call-Daddy-to-come-home-because-Mom-is-worried and scared. Nana came. And I took my break, which was, forsake-everything-else-and-sit-by-my-boy-and-watch-him.

Bring the power chair or the manual chair? Disney trip? All up in the air.