Christmas Eve, from Phoenix

I know you're all dying to hear how the plane ride went.  And, I'm proud to say that it went totally fine.  Having my children along to deal with and worry about really kept my own anxiety from creeping up.  I just didn't have the time or the energy to worry about worrying.  Don't get me wrong, I still popped two xanex and had 2 glasses of white wine, but that might have been more out of habit than necessity.  We landed without issue, and found our way to our rental car and our rental house.  Mason isn't quite sure what to think of all these things we are borrowing.  He was awake and standing next to our bed at 5:15 on Friday morning.  I think he might have been dressed into clothes, complete with shoes, by 5:20.  Silly boy.  He didn't think we were staying and was worried about being left behind.  It's been a little rough adjusting to the schedules of vacation, but we're doing ok.  Having fun, making good memories, and eating some yummy food.  I am still hoping for a date night with Chris while we are here.  I've yet to eat any mexican food, and damn it, that's just not ok.

Monday night we went to dinner, and the first thing I noticed was the mom at the head of the table, wearing a stethoscope.  My eyes darted around the table until they came to rest on her one year old son, with an NG tube in his nose.  We sat directly next to them, and I could feel my feet dancing, the excitement jumping from one foot to the other.  I could hardly contain myself.  Chris could tell I was dying to go say something to them.  Trouble was, I really couldn't think of a darned thing to start the conversation with.  But then I remembered something that a kind waitress said to me when she asked about Jackson.  She said it's so much nicer when people ask questions then when they just stare.  So, over I walked and introduced myself.  We talked about synergist shots, and NG tubes vs G tubes and how challenging, and yet rewarding, it is to be the mom of a kid with special needs.  It felt good, in the pit of my stomach, to reach out and connect.  I'm so used to the stares and the pointing and the whispering.  It was truly liberating for my soul me to see another mom, out with her child, just trying to have dinner as a family.

Phoenix has been good to us.  The weather is nice.  Jackson's oxygen sats are up a couple of points, and Mason has really enjoyed spending time with Grandma Donna and Aunt Nelly and everyone else.  I am overlooking the pool of our rental house, doors wide open, in the 70 degree weather.  It's a nice change of pace, but, it will be hard to convince myself it's Christmas tomorrow morning when there is no snow.

I am feeling blessed and safe and happy as we slip through Christmas Eve and into Christmas Day.  My children are home and healthy.  My family is together under one roof.  What a joy to be able to spend the holidays here in sunny Phoenix.

Merry Christmas everyone!!

Are we leaving for Africa for a month? Or Phoenix for 10 days? I can't tell!!

Whenever my mother packs for a trip, regardless of length of time she will be gone, she makes a list of what she needs to take.  She spells it out.  5 pairs pants.  5 shirts.  5 under ware.  You get the picture.  And then as she packs the items it into the suitcase, she crosses it off.  5 pairs pants.  5 shirts.  5 under ware.  I've picked this habit up from time to time, as it really does cater to the OCD in me.  Right now, I have lists for my lists.  And darn it, nothing is getting crossed off!  I have things to pack.  I have meds to remember to pick up to pack.  I have notes and itineraries and contact information to remember to print off.  I have to keep Jackson out of the friggen ER long enough to get his ass on a plane!!  And I have to fit in a clinic visit, a blood draw, and his 2nd RSV shot next week.  This is one of those times I am thankful for Chris' unemployment.

Jackson has been fighting a cold since Thanksgiving.

We were in the ER last Saturday, admitted to the 9th floor overnight for observation for low sats.

We were back in the ER Tuesday, for low sats and a high heart rate.  This time I managed to escape with him the same day.

We chalked the heart rate up to the higher doses of diuretic he had gotten in the overnight stay from the weekend.  I really, really don't envy his cardiologist for having to figure out just the right balance of meds to keep Jackson's heart and lungs happy.  I really, really don't.  Right now, he's too dry, so we're back to every other day.  For how long, who knows.

I've printed, I shit you not, 10 blank December calendars to take to Phoenix in an effort to organize myself down there without the benefit of the blood draw lab, or his cardiologist, being more than a 20 minute drive away.  I am fearful Chris will need to take my phone away down there so I am not texting Adel a gazillion times a day out of fear.

Taking two children on a plane ride to Phoenix sounds simple enough.  But then add in 2 car seats, a stroller, a pulse ox, a suction machine, a feeding pump, meds (Jackson and me), shit to keep a 4 year old busy for a 2 hour flight, the 18 tons of paperwork for approval to bring portable oxygen and medication on a plane, the actual oxygen itself, 2 adults (one of which will be a nervous wreck) and 2 children.  Luggage up the wazoo.  Good lord, seriously?!?!?  We may not travel again as a family of four until my kids are 18!!

Sicko

Jackson has a bit of a cold.  We are going on 2 weeks now, with lots of coughing and arfing and gagging.  I had thought he was starting to feel better, but then last Friday his pulse ox seemed stuck in the upper 60's.  I suctioned him, re-positioned him, and even got a new pulse ox reader, and yet, there I was, staring at 60's.  By Saturday afternoon, I had his cardiologist call ahead to the ER that I was coming in.  18+ hours with sats that wouldn't really budge.  And, when they plugged him in in the ER, his sat was 84.  I even took a picture of it and texted it to his cardiologist, with a little WFT note?!?!  Clearly, Jackson was missing the ladies, and felt the need to come for a visit.  He was, of course, admitted for observation overnight.  But, we were able to take him home on Sunday.  Less than 24 hours, with a boy who has spent 60+ days there at a stretch, really is something to celebrate!  We are trying to get his diuretics back on board and wait out the cold.  Which I really suck at.  You'd think by now that I would know better than to assume he'd be better in the standard two week time slot.  Jackson doesn't do anything standard.  And he doesn't do anything when / where / or how I tell him.  Stubborn is the worlds greatest understatement.

We are trying to get ready for Phoenix.  We are flying out early on the 19th to spend about 10 days with my in laws.  Lord help me.  Yes, we all know I am terrified of flying - that's a given.  But then add in flying, with 2 children, one of which is his own personal hospital on wheels, and, well, it's no wonder I've already called in my Zanex prescription.  Shit, I don't even have the time to go find myself a primary care doctor - I had to call my OBGYN to get them!  Talk about sad!!  ;)    I am ready for a change of scenery, that's true.  But, I don't think this counts as a vacation.  A vacation would include blue water that I can see through, sand, fruity girlie drinks with straws, and no children.  And no suction machine, no pulse ox, no g tube feeds.  TSA is going to have a field day when we try to get through security.  Someone should alert the media, sell tickets.  It's going to be a hoot, that I promise.  But, I'll have my Zanex and my single serve bottles of wine to get me through it.  I always carry two $5 bills on flights.  And I hear there's a bar in DIA.  Do you think 5am is too early for Chardonnay??  Nah!!!