Monday, June 24, 2013

Struggling

It's been awhile since I've written much of substance on the blog.  There are so many thoughts that I want to share.  On those days that I'm not hiking or participating in the torturous high-intensity workouts at the gym, I go for long walks around my neighborhood.  It seems like I have to keep moving to keep my sanity these days. It's during my long walks that I think, I pray and I compose. But putting my thoughts into an intelligible composition has been a challenge lately.


I'm struggling.

This year has been difficult for me emotionally. Jack is doing well. Me, not so much so. Why is it that the lull between the storms is always tougher than the storm?  The not knowing is tough, but the waiting it out (whatever "it" is) is brutal.  If that makes any sense.  I'm struggling to keep my emotions in check. It's ridiculous how often I find myself in tears. While I'm pretty good at giving the appearance of having my shit together, I can assure you that I do not.  

I'm struggling with how much to share.  There was a day when most of the people reading this blog were fellow trach moms - my sorority sisters (and a few of our fellow frat brothers).  We first met online at tracheostomy.com and from there, many of us have met in person - at our trach conferences and at moms' weekends.  It's easy to share with those of you who live (or have lived) the life.  With the advent of Facebook, the trach board camaraderie has all but disappeared as everyone has migrated to Facebook.  But, I always struggle with whether to link a blog post to FB.  I worry about what people who know me as someone other than "Jack's mom" might think.  I worry that people will worry about me (as in, "she's losing it").  I don't blog for pity, attention, sympathy or for my ego.  I blog because it's cathartic. I blog because it has allowed - and continues to allow, me to connect with so many amazing people.  Nevertheless, I still struggle with how raw I want to be.

So, yes - I'm struggling.  But, I'm okay.  As long as I keep moving, keep busy, keep escaping traveling and remember to just BREATHE, I'll be okay. Thanks for continuing to hang in there with me, for caring about me and for loving my Jack. 

Onward my friends.  Onward.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


My mantras - worn on my wrist to remind me to

"Just keep swimming"
"Enjoy the Moment" and
"Breathe"



Friday, June 21, 2013

Save the Date - Willow Tree Foundation Fundraiser

For those who are local - please come out and support The Willow Tree Foundation on August 25, 2013.

Thank you!


Sunday, June 16, 2013

Sunday, June 09, 2013

14 Years Ago



Fourteen years ago (yesterday) Jack was discharged from St. Louis Children's Hospital PICU after having spent nearly five of the first seven months of his life there.  Those months in the PICU were extraordinarily difficult - so many questions and so few answers.  Yet, I couldn't have asked for a more remarkable team of physicians, nurses and therapists to care for Jack during that time.  I don't think there is one person in that PICU who would tell you today that they ever thought on discharge day that the future would hold such a difficult road for Jack. We were all so optimistic that with time and growth, Jack would be fine.

Jack didn't get to be the kid who came back five years later to say "Look at me, look how far I've come". Nevertheless, Jack is still a kid who left his mark on that remarkable PICU team - a mark that shines through in the words shared by some of them in a book I asked people to sign prior to Jack's discharge.  I love these notes - they are treasures and they sustain me to this day.  Thank you to SLCH PICU for everything they did to get Jack to discharge day fourteen years ago, and thank you to them for loving my kid!

(click on the pictures to make them larger)





















(Jack's cardiothoracic surgeon)









Fourteen years later and Jack is still leaving his mark.  Just ask Grandma Bev.

Monday, June 03, 2013

Grand Canyon Adventure and Short Jack Update

One of the things on my bucket list is to hike to the bottom of the Grand Canyon.  My friend Erin and I have been talking about hiking the Canyon for almost ten years and this weekend we took our first step in preparing for our "to the bottom of the Canyon" hike.  The original plan was to hike to Indian Gardens  and back out for a total of nine miles, but once we got to Indian Gardens, we decided to continue on to Plateau Point, adding an additional three miles to our hike.  At the tip of Plateau Point is a straight drop to the bottom of the Canyon and the Colorado River. It was well worth the extra three miles because of the awesome view of the Canyon and being able to hear the roaring Colorado River below.

I was feeling pretty proud of myself for hiking twelve miles in one day until we ran into a bunch of people who were hiking from the North Rim to the South Rim in ONE day - a total of twenty-four miles!  I asked one of the guys we met why he was doing the hike in one day instead of spending the night in the bottom of the Canyon.  He said because it saved having to carry a heavy pack. (I'm guessing just to be able to say you did it is also a motivator.)  I think I'd opt for the heavy pack and the opportunity to spend time at the bottom of the Canyon.  If I'm going to hike to the bottom of the Grand Canyon, I want to enjoy the scenery and not have to rush to make it out in a day.   The guy we were talking with acknowledged that there wasn't much time to do any exploring doing rim to rim in one day.

The temperature in the Canyon reached 100+ degrees and we headed back up right at the peak of the afternoon heat.  We ran into several park rangers who suggested to us "if you don't absolutely have to be on the trail now, we recommend you wait a few hours because the trail will be shaded then." They told us that hikers were dropping like flies because of the heat. I wasn't sure where I was going to go if I didn't "absolutely" have to be on the trail. After all, it's not like there was a bar nearby where we could hang out and wait.  We decided to venture on and thankfully Erin had us well stocked with Gatorade packets and electrolyte chews.  I'm not much of a drinker - well, let me rephrase that - I'm not much of a water drinker, so Erin was good at reminding me to drink water often.  After about two hours in the brutal heat, we finally hit the shaded area of the trail and it was much more bearable after that.

From the top of the Grand Canyon to Indian Gardens it is about 3000 feet (to the bottom of the Canyon, it's an additional 2000 feet).  As you can guess, going down the Canyon was a snap. Going up the Canyon was a fairly steady climb until the very last mile, which ascends 1000 feet in one mile.  Having the toughest part of the hike being the last mile makes for both an exhausting and exhilarating finish.

Surprisingly, I never felt like I was too exhausted to continue and I wasn't even that sore when I woke up this morning.  Our "practice run" was a success and now we are ready to tackle rim to rim (in two days, not one).  We are planning on a rim to rim hike next Spring (April) and we are also planning a hike to Havasupai Falls in November.  Who's in?  You have to spend the night at Havasupai Falls, they won't let you hike in and out in one day because it's too long a hike. (Havasupai Falls is not part of the National Park Service, it's on Havasupai Nation land, so they get to make the rule that requires you to stay the night if you hike to the Falls.) 

Hiking has definitely become my favorite form of exercise.  Half marathons really aren't my thing.  I have committed to the Disney half marathon the first of September as part of Team Cure CMD, but after that, I think I'm done.  I'll leave the marathoning to my friend Christy.  I much prefer hiking!

For those not on Facebook, here are pictures from the hike (and below the pictures is a short Jack update):

(Note: some of the pictures are cut off because I made them larger.  Click on the picture if you want to see the entire thing.)


"Enjoying the Moment"
(checking out the Canyon the evening before our hike)



Sunset at the Grand Canyon - Pima Point 
(the Park service has shuttle buses that take you to various points along the Canyon. Sunset is a very popular time and there are several points that are known for having the "best" sunsets)




The start of our hike - Bright Angel Trailhead


Our destination - end of the trail at the tip of the plateau  


A photo-op on the way down 



Hiking down the Canyon was a snap


 blooming cactus along the trail


wildlife at Indian Gardens


The view from Plateau Point - the Colorado River


Another view from atop Plateau Point


Heading back to Indian Gardens


taking a break from the heat at Indian Gardens 
(a major rest stop for all hikers)


heading out of the Canyon (4.5 miles and 3000 feet to go!)


The afternoon sun was brutal 



still a ways to go to get to the top

looking back at how far we'd hiked from Indian Gardens





Still a ways up to go 


Back at the top!


My hiking companion and friend, Erin


_____________________________________

Short Jack update:

The day after I talked with the nephrologist's nurse when he didn't give me any real information about Jack's blood work, I received another call from the nurse letting me know that Jack's potassium was still too low, so the nephrologist was increasing his potassium chloride.  Contrary to what he had told me the day before, it seems that the nephrologist IS going to do something with the information!

Last week I received another call from the nephrologist's nurse asking me to call him as soon as I could. I'm thinking there is something urgent regarding Jack that he needs to talk with me about.  Not exactly.  He called to ask me why the urologist sent them the results of Jack's UA. Really? The first thing that wanted to come out of my mouth was "why don't you call the urologist and ask him?  Why are you asking me?" My response was that perhaps the urologist wanted to keep the nephrologist in the loop.

We had an appointment with Jack's palliative care doctor last week.  She informed me she's going mostly inpatient, so we will now be seeing another palliative care doctor.  Bums me out to have to lose her, but I hear the other doctor is just as fabulous.  They weighed Jack and he's lost a few pounds.  He looks skinny to me, but that's to be expected with the decrease in food.  For the most part, Jack continues to do well.  He has days where you can tell he's not up to par, but pain doesn't seem to be the issue. I think he just feels a little "off".  There have been days when Jack's heart rate runs really low - in the 40s when he's sleeping and not much out of the 50s-low 60s when he is awake.  I emailed his neurologist to ask her about it and within a few hours of sending the email (which I sent on Memorial Day), she called me on my cell phone.  Love her!  She said the low heart rate could be a conduction issue.  There are things you can do to treat it, if that is in fact what the issue is.  At this point, we aren't going to do anything to address the issue.

That's the update from here.  Thanks for checking in and caring about my sweet Jack.

xo