I Know, I Know ...

 .... I need to update the blog.

There's so much going on that seems like a big deal in my little world, but feels trivial when I think of sharing it.  This life as the parent of a medically fragile child with a progressing disease is anything but routine, despite that it has become our routine.  Routine or not, it can be overwhelming and exhausting at times.  But, we keep on keeping on because Jack didn't ask for this crappy life and he deserves nothing but our best for as long as we can give it to him.

I talked with Jack's urologist the day after I missed his call. For the record, this guy is at the TOP of the bar.  God had mercy on me.  After the urologist was unable to get in touch with me by phone, he emailed me (unprecedented for doctors in this City) and asked if I had additional questions since we last talked. I let him know my additional concerns based on the written CT report and before he called me the next day, he had taken the time to go to radiology, sit down with the radiologist and go over the CT scan again to specifically look at the issues I raised based on the report.  Like I said - At.The.Top. The plan is to do monthly UAs and monitor for infection.  As for the nephrologist, I'd like to say I'm done with her, but she writes the scripts for all of Jack's meds.  At this point, as long as Jack stays the status quo, I'll just stay the status quo.

The biggest stressor in my life these days is nursing.  I've written much about the nurses we have been blessed with over the years. But, to be honest, after fourteen years of having people in and out of my house every friggin' day, I've about reached my breaking point.  Or maybe it's just one of the many factors that has pushed me to my breaking point.  As much as it pains me, it's time to make some changes and bring new nurses on board.  So incredibly stressful.  You get the nurses who have loads of clinical experience and are very competent but are unwilling to stop and listen to how we do things and what is unique about Jack.  I'm scared.  I'm scared for Jack as he encounters strangers who will touch him, care for him and interact with him knowing he can't voice his opposition or concerns.  I'm scared to entrust his life in the hands of people I don't yet know.  It's just really, really hard.  I've had more than one person suggest that maybe I should work from home a day or two a week so that I can be here with Jack.  I think we must make this look too easy.  Fact is, Jack is a lot of work from the moment he wakes up to the moment he goes to sleep.  I could detail all that goes in to caring for him on a daily and hourly basis. But, suffice it to say, Jack requires skilled nursing care (whether it be from a licensed nurse or his parents) for a reason.  There is little down time. So, I trust, I pray and I take my cues from Jack as we make the transition to new nurses in our home.

To be honest, I wake up every day scared and sick to my stomach. If only that translated into an inability to eat, there would at least be an upside to all of this. This leg of the journey is brutal. The unknown is torture, especially for someone like me who likes to know the how, what, when and where of it all. I'm not so good at going with the flow.  But, it's sink or swim and so far, I'm still managing to tread water.

The next few weekends will be busy, but fun. This Sunday, I have the Willow Tree Foundation fundraiser and next weekend I'll be in Los Angeles participating in the Disneyland half marathon.  I swear this is my last half marathon - I don't know why I sign up for these things, I am so not a runner! One of Jack's former St. Louis nurses is coming out to run the race as part of Team Cure CMD.  I'm looking forward to spending time with her as well as seeing one of Jack's former St. Louis docs who now lives in LA.

I'll leave you with a few pictures of my handsome number two son.  He's growing up and is such an enjoyable kid these days. I know that could all change once he reaches teenage-hood, so we are enjoying the ride while we can.

  Cheers my friends. xo