It's A Process

When you are the parent of a technology dependent child, your focus very early in the journey (when you don't have a diagnosis and you still have hope) is to do everything in your power to get rid of the technology.  You get in "wean mode".  I spent the better part of the first three years of Jack's life trying to get him off the ventilator.  The longest he could ever go off the vent was about an eight hour stretch. In retrospect, he should never have been off the vent that long - or at all.  But, being the goal oriented, task master that I was, I wasn't going to cut the poor kid any slack and he gave it his all during those times he was breathing on his own off the vent.  If he could have talked, he no doubt would have told me to give him back the damn vent. If he could have moved, he no doubt would have grabbed the vent circuits and hooked himself back up.

Even after I accepted that Jack wouldn't ever get off the vent,  I still couldn't get out of wean mode. If I couldn't get him off the vent completely, then I was at least going to work on weaning down the amount of support he needed.  He didn't get very far.

When Jack would get sick and require increased vent settings and supplemental oxygen, all I could focus on was getting the vent settings back down to his baseline and getting rid of the oxygen.  Until recently, Jack has never been on routine meds.  My emphasis has always been "less is more".  My need to wean was never meant to torture Jack, but to have something to work towards.  All parents want to see their kids make progress, it's what gives us a sense of purpose and accomplishment.  It's what gives us hope. Despite Jack's ultimate diagnosis and lack of progress, I continued to wean and to push because I still had hope.  Hope - it's a funny thing. 

Getting out of wean mode is a process.  It takes time.  And that brings me to where I am today and Jack's need for morphine.  Initially, Jack needed a high dose of morphine around the clock to control his pain and allow his body to rest.  Eventually, wean mode kicked in and I tried to get Jack down to morphine on a PRN basis.  The problem with that was, when the pain comes, it hits hard and Jack ends up in respiratory distress before the morphine can kick in.  We went to scheduled morphine every four hours. Jack did well. So, of course, what am I thinking?  Wean down to every six hours or maybe he can make it to every eight hours.  I know this sounds crazy to most of you, but all I can say is, it goes back to feeling like you are making progress and with progress, comes hope.

The bottom line is, Jack needs morphine on a scheduled basis and he needs it more often than every eight hours. This is what he is telling us. I need to be a better listener and I need to change my way of thinking. Letting go of the "need to wean" mentality is hard to do.  But, I need to do it for Jack.  Forget progress, forget hope, forget a sense of purpose or accomplishment. It comes down to what will make Jack comfortable.

As my friend, who is one of the docs on my support team, recently shared with me about weaning Jack's morphine:

" ... could not agree more with getting away from weaning as victory.  Victory over what? The disease? We will all have to let our kids with CMD go gently into the night though we have spent the better part of our lives making every effort to do just the opposite - attempt to defy progression, make small concessions but not without a fight and go down paths with no right answer  . . . "

And she is absolutely right and I love her for her honesty.  I can't say enough how blessed I am to have the most amazing people guiding me and supporting me in this leg of the journey.

I'll close by saying to all of you, despite the tone of this post - don't be sad.  Jack's pain is controlled and he is doing well.  When he isn't hurting, he is happy.  He really is so easy to please  - "Give me my vent and give me my morphine and life is good, Mom." 

Okay Jack, you can have your vent and you can have your morphine.

xoxo

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

A couple pictures of Jack off  the vent 

(for those who are wondering, the tube going to Jack's trach is not a vent circuit, it's hooked to a compressor that is delivering humidified air. Jack is breathing on his own in these pictures)

How We Are Doing

So we are two weeks on hospice and I think it's fair to say that Jack is doing much better than his mother. Then again, he has unfettered access to morphine and, well ... I do not.

Jack is doing better. Being able to control his pain and allowing his body to rest has really helped bring him back from that far off place he escaped to when he was trying to deal with the pain.  He is much more alert and attentive these days and is even sharing smiles on occasion. I've been able to wean his morphine down from the maximum dose every four hours around the clock to PRN with a lower dose.  However, every time I think I might have him weaned down to needing no morphine, he lets me know that is not the case.  He's still needing it a couple of times a day.  The million dollar question is why? I've slept very little the last two weeks because I'm relentlessly haunted by the "what ifs".  What if we are missing something obvious? What if whatever is causing Jack's pain is a simple thing that can easily be treated? What if he was being seen by his St. Louis doctors instead of the doctors here?

This, my friends, is where faith comes into play.  Despite all the "what ifs",  my gut tells me that the decision to transition Jack to hospice is the right one.  And, I believe with all my heart that my "gut" is God driven. If I can't believe that, then I've got nothing to go on and I desperately need something to go on.

Being on hospice does come with a few perks.  For one, the coveted morphine is delivered right to your door - no trips to the pharmacy in the middle of the night required. Your hospice doctor also makes house calls. I had scheduled an appointment with Jack's pediatrician/palliative care doctor awhile ago, but because Jack is on hospice, she came to the house yesterday - along with the hospice nurse and the social worker.  A bit overwhelming, but also much appreciated and welcomed. It's a bit of an adjustment to get used to so many people being there for you. I mean really being there - in person, for you. It's uncomfortable and good all at the same time.

As for me, I used to think I had a pretty good handle on juggling the whole medically complex kid + regular kids + working full-time thing.  Not so much anymore. I completely forgot Eric's parent-teacher conference last week.  But, all I had to do was throw out the "Eric's brother was transitioned to hospice" line and it was all good. Another perk of being on hospice - people cut you a lot of slack.  And lately, I've needed to be cut a lot of slack because I'm missing a tremendous amount of work due to lack of nursing coverage.  The upside to the lack of nursing is that I'm getting to spend a lot of time with Jack - just mom and Jack time.  It's been nice ... and a lot of work.  It's been years since I've done a trach change, changed out the vent circuits and other equipment that needs to be changed out every few weeks or even given Jack a bath, because his nurses usually do those things.  But, I so appreciate this time I'm getting to spend with Jack that I otherwise wouldn't have. Life has a way of working out how it's supposed to, even if it doesn't seem like it at the time.

Mark has been out of town all week and won't be home until late Sunday, and, as much as I appreciate all the quality time I'm getting with Jack, I'm in desperate need of some sleep.  So, Jack and I will be heading to Ryan House this weekend where I can sleep and he can get the love and attention he deserves.

Well, that's the update from here. Sorry for the long break in blog posts. It's difficult to put all that I'm feeling and thinking into words, especially when I'm so darn tired.  Most days, I seriously have to remind myself to BREATHE.  I do feel like Jack is in a stable place at the moment. We are able to control his pain without snowing him - I'll take that.  One day at a time.

Onward.

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

Just some pictures of Jack .... Just because.

Circa 1999  (~ 9 months old)

Circa 2000  - Jack is in his stander and Elmo is strapped to the oxygen tank stand :) 

The "H" Word

Picking up where I left off a couple of posts ago ...

After two nights and two days of almost no sleep because of pain we could not get a handle on, we took Jack down to the emergency department at 4:30am Wednesday morning. After spending most of the day in the emergency department and having a thorough work-up of tests, there was nothing they found that pointed to any specific thing that would be the source of Jack's extreme pain.  Mark and I decided that we weren’t going to admit Jack and go on a fishing expedition to try and find what could be causing the pain.  If the source wasn't obvious, we weren't going to put him through a bunch of invasive tests that may or may not give us any useful information.  This decision was based on all that Jack had been through the last year and a half and what had already been done as far as surgeries and procedures.  

The decision was made to transition Jack to hospice.  Hospice is a scary word, I know that.  I've been avoiding the word ever since we transitioned Jack to palliative care. But, it’s important to understand (as I’m trying to understand) that hospice does not only deal with end of life care, it also provides comfort care. It is possible to be discharged from hospice. Jack may or may not come through whatever issue is causing him the pain.  But, by being on hospice, we can make sure Jack gets the pain control he needs without visits to the emergency department and without hospital admissions. To be clear, we are not precluded from pursuing further testing if we change our minds down the road. 

At the moment, Jack is getting morphine round the clock and, as of today, he is significantly better than he was just two days ago now that we have the pain controlled. He is awake and alert, but certainly not his usual self. I really hate not knowing what is going on. It’s beyond my understanding why the doctors can’t readily find the source of the pain.  But, I’m fortunate to have the support of a trio of doctors who are also my friends – Jack’s St. Louis neurologist, a PICU intensivist and the founder of Cure CMD.  All exceptionally bright people who know more than anyone else about Jack’s disease and who, most importantly – know and truly care about Jack and me.  They assure me that the tests that have been run would find the source of Jack’s pain if it was something that could be easily found and treated. I trust these people implicitly and I will continue to consult with them as things progress. 

I thought long and hard before sharing this information.  However, I’ve always been honest in sharing this journey, so I can’t stop now just because the topic is an uncomfortable one.  I can say that today things don’t seem as dire as they did a few days ago. But, I really haven’t a clue where this is heading. 

That's the update my friends.

Onward.

__________________________

P.S. For the second year in a row, I was unable to participate in the Disney half because of Jack issues.  I think Jack has a problem with me going to Disneyland without him!

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

Unchanged

Jack had the CT scan of his abdomen yesterday and I talked with the urologist today.  The verdict is that the stone has not gotten any bigger since the last scan in March - keeping in mind that it currently occupies more than half of the space in the collecting system of his right kidney. The urologist did say that the stones that are outside the kidney (because of the perforation that occurred during the first surgery last year) have moved to the pelvic area.  He tells me these "floating" stones aren't painful for Jack.  Call me a skeptic, but I'm not convinced that they are as benign as everyone says they are.  Nevertheless, Jack is having more good days than bad days at the moment and I'll take that.  If the kidney stone(s) had continued to increase in size, I was prepared to tell the nephrologist that we were going to discontinue the meds she has Jack on. I figured if they aren't doing anything to stop the stones from forming, then why be on them.  I guess we'll continue with the meds given the status quo.

That's the short and sweet update from here.

Onward.

xo

Cure CMD at the NIH

After having just spent two days at the National Institutes of Health for the Cure CMD conference, all I can say is ... Wow!  You can't help but be in awe as you walk around the campus of the NIH.  The place emanates brilliance (and security).  One of those brilliant minds is Dr. Carsten Bonnemann. Dr. Bonnemann works closely with Dr. Anne Rutkowski (Co-Founder of Cure CMD) and he is instrumental in helping Cure CMD carry out its mission.  Notwithstanding his brilliance, Dr. Bonnemann is humble, he is kind and and he is approachable.  He spent the first evening of the conference hanging out with families, answering questions and even looking at an MRI scans brought by a family who traveled from South America to attend the Conference!

My intent in attending the conference was to meet several CMD families who I've only known via email and Facebook.  I wasn't disappointed.  It was such a great experience to not only meet the families I'd connected with online, but to also meet other CMD families, as well as physicians from several top Children's Hospitals across the country, physicians/researchers from Europe, and the geneticists/researchers who work with Dr. Bonnemann at the NIH.  The brilliance factor was off the charts! It was a privilege to participate in such an awesome conference held at such a remarkable venue.  

A few pictures of the NIH campus:  

Lobby of the main clinical building

elevator doors

I loved this quote on the wall of the auditorium named after its author:

Hospitals with long 

traditions of excellence have 

demonstrated abundantly that 

research enhances the vitality of teaching; 

teaching lifts the standards of service; and

service opens new avenues of investigation

______________________________

Short Jack update:

Jack has his repeat CT scan next week. I had to move it up because the last few weeks he has been experiencing pain and is not tolerating sitting in his wheelchair.  His urine output is also down, which has me concerned that the stone may be blocking things.  I'm not looking forward to where this might be heading.  I'll update after the CT once I know more. 

xoxo

Miscellaneous Stuff

Statistics:

Seven years ago today, I posted my first blog entry. This blog was originally started to keep family and friends updated on Jack's spinal fusion surgery that was taking place in St. Louis.  I originally played with Caringbridge and started to set up a page on their site, but then I discovered Blogger and the rest, as they say, is history.

This is my 802nd blog entry.

4388 comments have been posted over the course of the last seven years.

That's crazy.  And awesome.

We are loved and, trust me, all of you who read this blog and who comment here (or on Facebook) have carried us through the last seven years.

I've only downloaded my 2006-2007 entries into a blog book.  I really need to get the other years downloaded and the memories preserved.  The problem is that I want to save all my comments and those have to be individually cut and pasted into the blog book that is "slurped" into BookSmart - the program I used in the past to download my blog entries.  All I need is time.  Or to pay someone to do it for me.  I'm thinking the latter might be the more realistic option.

Thanks to all of you who follow, who read, who comment and who care! Needless to say, the last seven years have been quite the ride.  If you are interested in reading some of what I consider my "better" writing - I suggest reading the posts that I have listed on the right sidebar under "Blog Thoughts". They cover a range of topics and I think they are representative of this crazy journey we are on.

Cure CMD and More Travel:

I already shared this on Facebook, but for those who are not my Facebook friend, here is the link to an article from the latest edition of Quest (a magazine published by the Muscular Dystrophy Association).

Taking Aim at Congenital Muscular Dystrophies

The article is an interview with Dr. Carsten Bonnemann - a pediatric neurologist at the National Institutes of Health and an expert in the field of congenital muscular dystrophies. Dr. Bonnemann is the person who is trying to determine the genetic basis for Jack's form of CMD through whole genome testing.  Speaking of which, it's been eight months since we sent our blood off to be tested. I'm hoping we hear something soon. Not that it will change anything for Jack, but it's still information that I'd like to have.  We know Jack's subtype of CMD is a dystroglycanopathy.  There are several known subtypes of dystroglycanopathies.  Jack has been tested for four of them in the past and his genes for those known subtypes came back as normal.  I've been told that it's likely that Jack has his own unique subtype of CMD. I wonder if I'll be able to name the subtype if they discover which gene is involved?  I've got a few choice words I can think of to call it. :)

Next weekend, I'll be flying to DC to attend the Cure CMD Family Conference that is being held at the National Institutes of Health.  I was asked if I would be willing to sit on a panel at the conference and I agreed.  When I saw the conference schedule, I discovered that I'm on a panel with four MDs!  The topic is breathing management of individuals with muscular dystrophy.  Of those on the panel, I suppose I have the most practical experience on the topic. I'm actually looking forward to participating in the conference and I'm really looking forward to meeting the families who will be attending.

I have to share an example of the power of the Internet.  Several weeks ago, one of my friends on Facebook shared the link to this blog post: I Effing Hate Holland.  After reading this, I sent an email to the author because of the connection we have as moms of 14 year old sons with a diagnosis of muscular dystrophy. After exchanging emails back and forth and me sharing a little bit about Cure CMD and the upcoming conference - this mom registered and will be attending the conference!  I'll get to meet her in person and introduce her to some of the best of the best when it comes to diagnosing and managing CMDs.  How cool is that?

Why I Hate Meds

It's no secret that my claim to fame when it came to Jack was that he was never on any routine meds except for his morning pulmicort treatment.  Whenever I had to give Jack's history and "list of meds", the docs were always amazed that he didn't have a "list".  That all changed when the kidney stone reared its ugly head.  Now Jack is on several meds that he gets twice a day.  The problem with meds is that they all have side effects.  If you read the side effects of the meds Jack is on, there are some that we wouldn't know if Jack is experiencing because he can't tell us.  That breaks my heart.  Recently though, we've noticed that Jack's hair is really thinning.  That makes me sad.  One of Jack's claims to fame has always been his awesome head of hair.  Almost everyone who saw Jack (from his doctors to the woman who cuts his hair) would comment on what awesome hair he had.  Not anymore.  When I looked up the side effects of his meds, one of them lists alopecia as a side effect. Bummer.  I realize that thinning hair is the least of Jack's problems and I suppose if the trade off for losing your hair is keeping the pain of a kidney stone at bay, it's worth it.  But, it still bums me out.  Fourteen year old boys aren't supposed to be losing their hair.  Then again, they aren't supposed to be trached, vented, g-tube fed, immobile and wheelchair bound either.

Que Sera, Sera.

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.

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My mantras - worn on my wrist to remind me to

"Just keep swimming"

"Enjoy the Moment" and

"Breathe"

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!

Happy Father's Day

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.