Friday, August 23, 2013

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


Mary Anne Perez said...

Hello, my friend. I don't always get to read your posts but I'm glad I read this one. What a blessing you are to your children. I really mean that. And what a reminder for me to be grateful for the life I have, with its own pitfalls and curve balls. Every time I read your blog I'm reminded of how amazing you are, seriously. I wish I could run alongside you on your run, but that would be disastrous. Maybe I can cheer you on or meet you at the finish line. Let me know if you have time to meet up when you're out here.

Clara Harmonson said...

Hi Ann, it's been a while since I've left comments here, but I've reading and thinking about you, Jack and your family. You are a truly amazing woman, and as you are scared of the unknown and trying to roll with the punches, I pray for the best nurses to come to your life. The best for Jacks current needs, the most reliable and the ones that will fall in love with your boy. Sending you a hug from Tx!

ssouth said...

Oh Honey, hugs for the fears and strength for the journey. My prayer is that the right nurses for Jack and your family appear on your doorstep with open hearts and gentle hands. Love you!

Susan said...

That's not trivial at all Ann. It's scary, I'm sure, changing nurses, when Jack is so dependent upon them. I can understand why you feel sick to your stomach. I hope and pray this transition goes well for you, Jack and your whole family. (((((HUGS)))))

Anonymous said...

Hey Ann, too bad you don't live in Denver! I'd come and work for you :). I know your journey is exhausting; stay strong! I hope you enjoy your half-marathon. Lots of luck! Hugs, Whitney

Sarah said...

Thank you Ann...for saying what we all feel. I wish I had a magical wand to make it easier. People seem to think that as we adjust to things, they will become easier. As though time will fix it. It doesn't... But you continue to inspire me! Jack is so so lucky to have a mom like you. Love and hugs as always!