Houston, We Have A Prob... oh, nevermind, Mom's here.

Today started the first day of Bethany's 48 hours of care for Penelope.  The journey to bringing P home has been a long one and the last four days are the hardest.  The last four days are the days where the main caregivers duke it out with P and P alone.  Well, and all of her fancy toys that keep her alive.  Today and tomorrow Bethany is caring for Penny, at LB, mainly by herself, aside from the times that myself, her mom and my mom are there.  She has the assistance of the nurses only when something comes up that she doesn't feel she can handle herself, or in a situation that would require the help of the on-call nurse that we will have at home.  Bethany has to ask for medicine by name and by dosage, care for the machines and for Penny and somehow sleep between checking the humidity reservoir every two hours.  Which leads me to the story of today which ruled them all... the stories, ruled all the stories that i would have told... ruled middle earth. wait.

Penny's current weight - a hefty 6.00kgs. = 13lbs & 3.64oz

Bethany went in today around 12 to start her stay, only to discover there were a lot of things that needed to be done first before her stay officially started.  After paperwork, explanations, final pieces of equipment dropped off, and finally getting to settle in with P, Bethany started her stay at 4:45pm.  The plan was to go downstairs with P for the "Go Jim Go" telethon with Jim Jaggers and do an interview.  While packing up and getting things ready a series of things started to unravel.  Let me backtrack, yesterday when P was moved on to her home equipment and we finally got the learning experience on everything in actual use and not just on a balloon baby, we left with the exciting fear of starting the home stay process.  Somehow though not all of that info that she was on home equipment made it down the chain and the humidity reservoir that used to be refilled on it's own by a hanging saline bag was now needing to be refilled by hand every 2 hours, didn't make it to the right people.  So poor Penny had to live in a desert until mommy got there to refill the tank.

Once she had humidity in her lungs again, she started the process of getting the dried up secretions out, but the only way for them to really get out is for us to suction them out.  The more secretions and dry she is, the thicker it is and that forms what's called a plug, or basically junk that's so thick it hangs on to the end of the trach pipe down in her airway.  It gets stuck on the edge and every breath pulls it over the hole and she can't can't take that breath properly.  Like getting choked and not being able to dislodge whatever it is that you've got stuck.  She hadn't really had that many issues until the time to move her downstairs, when we started lifting her around getting holding her, propping her upright, all that dislodged stuff and started throwing super thick junk around.  She plugged off and Bethany started to just go Team Captain on us and we all started rowing at the same time.  She got suction ready, i bagged, her mom got the vent and oxygen fixed, my mom held Lydia and watched the monitors.  She went from a nice dusky pink back to her nice rosy self soon.  It was during this transition though that we discovered other things, like where not to put the suction machine, where to put the vent, what cords not to crimp while putting the vent in, learning that our vent machine's internal battery only lasts for 15 min before dying, ya know, important things like that.  These are the reasons for the home stays, not just so you know what to do but so you know what to do when something goes wrong.  That's really the big reason.

We ended up missing the telethon all together but learning what we did and working together through it was much more beneficial.  There will be a lot more of that in the days to come.  Learning what to miss and what not to miss and how to handle the situations with the best grace that we can.  Saturday and Sunday will be Bethany's mom's turn for the two days, so prayers for Bethany and her mom are greatly appreciated.

Since Bethany has all the pictures on her iPhone... this will be a picture-less update.  Hope it was, at least, worth the read!

Jonathan