Dear Attending

Dear Emergency Department Attending,

My son recently came under your care.  He was the "14 y/o male, dx muscular dystrophy".  He was the child in the wheelchair, trached and vented, with the contracted limbs and the drool cloth under his chin because he can no longer swallow.  He was the child staring off into space, lost in a sea of pain.

Next time, walk into the room and talk to me.  I understand doctor speak and, yes, I'm going to ask pointed and tough questions.  I don't expect you to have all the answers or fix all that is broken with my son.  But, when it's time for me to make difficult decisions regarding my son's course of treatment, I need to know I'm talking to the physician with the most experience.  I need to know I've asked all the questions, received expert answers and have left no stone unturned.  I need to know I am making an informed decision. After fourteen years of living in the medical trenches, I've earned the right to your presence.  I've earned the right to ask you questions and question your answers.  Respect that right.

Next time, walk into the room and touch my son.  Put a stethoscope to his chest. Examine him.  After fourteen years of living with a disease that has stolen everything from him but his spirit, he has earned the right to your presence.  He's earned the right to your touch, your eyes, your ears, your experience and, I dare say, your heart.  Respect that right.

Onward.

Deja Vu

(picture courtesy of my friend Eric Fisher)

At the time we transitioned Jack to a palliative care doctor last November, we were given a script for morphine.  Since November, we've had to give Jack morphine here and there because of pain, but he's not needed it on a routine basis.  For the past few days, Jack has been in significant pain. His heart rate is high and his sats are low enough to require supplemental oxygen.  As we always do when his sats are low, we approach it first as if it might be a respiratory issue.  We give repeated rounds of the Vest , breathing treatments and extra suctioning.  When that doesn't resolve the problem, we know the low sats are pain related.  I gave Jack the morphine in the amount and frequency as written. He got minimal relief.  I decided to sleep with Jack last night so that I could keep an eye on him. As I lay next to him watching him struggle to close his eyes and get comfortable, it was killing me because I just didn't know why he was hurting.  After watching him for awhile, I couldn't stand it anymore.  I needed to rule out anything obvious before I jumped to the conclusion that it has to be the damn kidney stones.  Knowing how fragile Jack's bones are, I always start there.  I moved Jack's arms and legs to see if anything hurt when moved.  I noticed when I got to his left leg that his knee was slightly swollen and it didn't look right. I heard a popping sound when I bent the leg at the knee.  Jack didn't wince like he has in the past with a broken bone, but he definitely didn't like it.  My gut told me that his leg was broken.  Jack eventually fell asleep, although his heart rate hovered around 100 all night, telling me that he was still in pain.

First thing this morning, I called and was able to get Jack in to see his orthopedic doc. The x-ray showed that he has an impact fracture of his left femur - a very obvious fracture on x-ray. This is the second time he has suffered this kind of fracture.  They splinted Jack's leg with a knee immobilizer and sent us on our way.  A couple of people have asked how or when the fracture happened.  I have no idea.  I don't know when it happened, other than it likely happened within the last week according to the orthopedic doc.

Jack continues to be in a lot of pain despite having his leg immobilized and getting morphine as often as he can.  I called the palliative care doctor this afternoon and asked if we could increase the amount of morphine because the dose as written wasn't touching Jack's pain. She doubled the dose and as I sit here right now next to Jack - he is still in pain.  His heart rate is high and he's requiring oxygen to keep his sats up. We cannot seem to get him the pain relief he needs.  I find it difficult to believe that the broken leg is causing the amount of pain he is still in. So the question is, how much time do I give it before I haul him to the ED to find out if it's something else? And where do we start looking? Do we consider kidney stones as the source even though he had a CT scan just a month ago that showed that the stones were stable?  I can't begin to adequately articulate how incredibly stressful and disheartening it is when you have a child in pain who cannot tell you where it hurts.  I just want this child to get some pain relief so he can get a restful night's sleep.  He is so tired and he can't get comfortable.

I'm supposed to leave for LA on Friday for the Disney half marathon.  I think Jack must not want me to do this race because, if you recall, this time last year we were inpatient at PCH and I had to miss the race.  I'm still optimistic I'll be able to go to LA, but I guess time will tell.

Que sera, sera.

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

I Can't and I Won't

I received the written report from Jack's last CT scan.  I always request copies of the reports because it's been my experience that I don't always get the full report from the doctor. The verbal report I get is typically filtered based on what the doctor is looking for or deems important from his/her perspective.

The full report from Jack's last CT is:

• stable multiple nonobstructive calculi within the right kidney
• stable small nonobstructive calculus in the left kidney
• 1.4 cm calcification in the bladder lumen posteriorly ... appears to represent conglomerates of smaller calcifications. 

Stones abound ... just waiting to announce themselves.  When I talked with the urologist last week about the results, he didn't mention the stones in the bladder.  I called his office and left a message asking if he'd call me because I had more questions.  He called this afternoon, but I missed his call. Hopefully, we'll touch base tomorrow.

The question is, did the bladder stones originate in the kidney and travel to the bladder (unlikely) or form in the bladder.  Based on what I've read, I'm guessing that the stones formed in the bladder because Jack experiences many of the issues that give rise to bladder stones (the details of which I'll spare you).  So, where do we go from here?  The one thing the urologist did ask me last week was whether the nephrologist is still following Jack.  That's debatable.  If you recall, according to her, Jack is a "very sick and complicated kid" and she pretty much left it at that. The blood work that was done last March was done at my suggestion and notwithstanding the fact that the results caused her to make a change in Jack's meds - she didn't request any follow-up blood work or a follow-up appointment.  Bladder stones require monitoring.  I'm debating on whether to stay with our current nephrologist, request a second opinion from someone else in the group (which is generally not allowed - or so I'm told) or travel out of state to find another doctor (ugh!)  I'm not naive to the possibility that seeing a new nephrologist won't change a thing as far as Jack's treatment and/or condition is concerned.  But, I need someone who is more invested in Jack.  Yes, I'm a difficult parent and yes, I have high expectations.  But, I've muddled through the medical muck long enough to know how high to set the bar and what I need to do to make sure that those who care for Jack are at the top.  Many years ago, one of Jack's St. Louis docs told me that I needed to "temper my expectations" when it comes to what I expect from Jack's doctors.   My response to that is - I can't and I won't.

I'll wait to talk with Jack's urologist and then make some decisions from there.

On a positive note,

A while back, I read about an organization called CAREGIFTED that gives respite to family caregivers through all expense paid getaways.  One of the qualifications is that you must have been a caregiver for at least 10 years.  I shared information about this organization with a couple of my sorority sisters and encouraged them to apply.  Initially, it didn't occur to me to apply myself, although I'm not sure why.  About a month ago, I sat down and wrote out my story and filled out an application.  I received an email last week informing me that I had been selected for a Caregifted getaway.  Amazing!  I honestly never thought I'd be selected.  There are several places to choose from for your week getaway and I chose Vancouver Island.  They offered me a week away in September, but I'm not able to go because of prior commitments.  I told them I wouldn't be able to get away until some time next year, so they will let me know the 2014 availability as soon as they know it.  I am beyond excited and humbled that I was chosen for such an amazing gift.  I can't even imagine what it will be like to have an entire week of uninterrupted sleep and time all to myself.  I'm feeling guilty already.

That's the update from here.  I'm trying to keep the whining to a minimum, so the blog entries have been sparse.  I've got a few blog thoughts started - the topics are anything but light.  I'm not sure when (or if) I'll finish writing them.  In the meantime, thanks for checking in and thanks for caring!

xo