Thursday, February 28, 2013

Bullet Point Update

• Mark has a new job and we still have health insurance (with the same company, so we can go through this all over again in a few years).

• My Sedona get-away was spectacular and it was so great to spend time with my friend Karen.  Two days wasn't nearly enough, but I'll take what I can get.

• Jack's kidney ultrasound is scheduled for next week (love our urologist).

• Eric and I are participating in the Run for Ryan House on Saturday. We are doing the 5k - should be fun.

• Our dear friend Peggy is coming out to Phoenix to visit us for a few days next week. She says she's coming out to see Jack, not me. Too bad, she's still going to have to put up with me because I'm taking a fews days off from work when she is in town! :) (For those who don't know Peg, she is one of Jack's former St. Louis nurses who has become one of my very best friends.)

• Jack is sick. I walked in the door after work last night to find Mark bagging Jack.  Since then, more bagging, increased vent settings, 3L oxygen, high heart rate and a miserable kid.  I'm not sure yet where this is heading.  In the past, it would have been an absolute NO to going anywhere near a hospital when Jack was sick because I had absolutely no confidence in the hospitals here.  But, after all of last year's admissions and making a few key connections with doctors I trust and who can make things happen, I'm not as opposed to taking Jack to the ED if I feel it's necessary. As of now, I don't feel it's necessary.  We started him on Tamiflu.  Our pulmonologist gave us a script with several refills to have on hand.  I'm not sure it's the flu, but I figure it can't hurt to give him the Tamiflu just in case.

Stay tuned.

Sunday, February 17, 2013


Sorry for the long break in blog posts.  Life is busy, but nothing extra-ordinary going on. Well, unless you consider the fact that Mark found out a month ago that he's been "displaced" at work.  That's the corporate world's nice way of telling you -- you are out of a job.  Mark's company has a history of going through massive layoffs every couple of years.  So much of a history, that the company's CEO has made a reputation for himself because of all the layoffs that have occurred during his tenure.  The annoying thing is that they layoff entire departments and then turn around and post a bunch of new job openings and the "displaced" employees are "encouraged" to apply for those jobs.  Mark is fairly confident that he will get one of the coveted spots, but there certainly are no guarantees and we are getting down to the wire with no replacement job yet.  I'm just trying to keep my panic level at a minimum. Aside from the obvious loss of income, the loss of health insurance would be catastrophic. To say the stress level in our house right now is at an all time high is an understatement.

So, I'm going to do the only rational thing to do when the stress level is off the charts ... I'm running away.  For a few days anyway.  I have a friend coming to town from Maryland and we are escaping to Sedona for a few days this week.  We actually planned this get-away back in November, but the timing couldn't be better.  I may never come back.

spectacular Sedona 
(not my photo)

Jack is doing great.  I think it's safe to say that he's stable and feeling well and maybe, just maybe, this year will be an uneventful one.  He does have occasional "episodes" where his color changes pretty quickly and he looks like he's about to faint (if he were standing up).  It usually happens when he's in his wheelchair.  Our guess is that it's heart related.  He eventually recovers and seems to be no worse for the wear (so far).  Next month will be six months post-op from his last kidney surgery, so I'm going to ask his urologist to order a kidney ultrasound - which he originally wanted six weeks post-op, but I thought that was too soon (or maybe, I was just "done" with hospitals and doctors at the time), so I never scheduled it.  I'm not expecting that the ultrasound will show a recurrence of stones, I'd just like to confirm that all the medications Jack is on are doing what they are supposed to.  Plus, I kind of miss all those trips to Phoenix Children's (NOT!)

Speaking of Phoenix Children's  - last week I participated in a palliative care educational program at the hospital as a member of a panel representing the different organizations in the State of Arizona that provide services and support for sick and dying children and their families.  I was invited to share information about the Willow Tree Foundation.  I recognized several of the PICU and airway floor nurses who cared for Jack last year who were in attendance.  One of the airway floor nurses told me that she'd be sending me a lot of referrals now that she knows about the Foundation.  I expect business to pick up significantly after this event, which will be great!

Well, that's about all the news I can muster from my little corner of the world.  Thanks for checking in, thanks for caring.


Monday, February 04, 2013

Of a Few Things, I am Certain

The other night, I woke up around 1am and as I was lying there in bed listening to the rhythmic sound of Jack's ventilator through the monitor, my thoughts naturally went to Jack.  As I stretched out my legs to get comfortable, I imagined what it must feel like not to be able to do that simple act even though your body is telling you it wants to.  In fact, I tried to see how long I could go without moving as I lay there in bed.  I could feel my body wanting to shift positions and I struggled to not move a muscle despite my body's urging.  I didn't last very long before the uncomfortable feelings took over and I had to move.  Try it sometime - see how long you can go without moving.  It's tougher than you think.  You don't realize how much you move to get comfortable without even thinking about it - until you can't.

Needless to say, after failing miserably at my little experiment, the tears came when thinking about how Jack must feel.  I couldn't go back to sleep, so I went downstairs to lay down with Jack in his bed. When I walked into his room, I was quite surprised to see that he was still wide awake.  I had my phone with me because I had intended to listen to music with my headphones on.  Since Jack was awake, I ditched the headphones so that we could both listen to the music.  I have a playlist of contemporary Christian songs that I played.  Jack was clearly happy to have something to break the silence of the night.  I held Jack's hand and tried to catch a few winks.  At one point, I looked over at Jack and saw that he had tears in his eyes. This was not the first time I have seen Jack moved to tears by a song. Yet, I am always taken aback when this child displays such emotion to the words of a song.  It's these moments that quell any doubt as to the depth of Jack's understanding of the world around him.

I've said it before and I'll say it again - Jack's eyes speak volumes.  It's almost frightening.  It's as if he sees directly into my heart, my mind and my soul. The wisdom behind the silence is piercing. There is a spirit about Jack that can't be explained, but can be profoundly felt in moments like the other night.

There are few things in this life of which I am certain, but if Jack has made me certain of anything, it's that there is a God, there is heaven and there are angels sent from heaven to grace us, to teach us and to bless us.  Of what I am most certain, is that Jack is one of those angels.


For anyone wondering, the song that moved Jack to tears was "Here With Us" by Joy Williams.