Yielding (A Reminder)

(Yielding is a well written essay that hits very close to home for me.  I shared this piece on my blog years ago, but it's a good read no matter now many times you read it and it's something I need to be reminded of often.) 

Yielding

(from Changed by a Child)

Looking at what might be ours if we surrender to the fact of our child’s disability and its impact on our life, looking around at the roles others in a similar position seem to occupy, we might immediately protest: “Hey wait a minute.  I don’t want to be exceptional, special, an advocate, political, a pioneer, a teacher, an expert on disability, brave, anguished, stigmatized, toughened, changed, holy.”

To surrender means to yield to the power of another; it carries strong connotations of defeat and ignominy. But to surrender also means to give up resistance.  When we cling to our self-will we are in the ludicrous position of putting ourselves in charge of things that are out of our control.  On the other hand, when we give up our will, when we give up resisting something we can’t change anyway, we open ourselves to a new set of choices.  Actually, we never abandon our ability to will and to choose.  We only shed the will we are presently exerting, because it no longer fits the circumstances of our life.  Like a molting lobster, we give up the too-small will and grow a new set of intentions that fit.

Having given up our will that our child will walk, or see, or go to college or continue the family name, having embraced the new choices and undertaken new actions, we may discover that what we are doing is, in fact, exceptional or pioneering.  We may find that our new, bigger shell is that of an advocate or an expert.

Plans

Last year, our plans included a couple of week long family vacations. What wasn't in the plans when we scheduled these trips was the additional 30+ days of work I'd miss due to hospital admissions for Jack. Given the events of last year, I've been hesitant to make any vacation plans this year. However, the guys I work for made it clear that I was to take vacation time and not worry about how much time I was off last year.  Needless to say, they didn't have to twist my arm to get me to comply.  To date, I've only taken a few days off - limiting my vacations to long weekends.  

We've now made it almost to the end of April without a hospital admission or any significant issues with Jack.  I don't really get why Jack is doing so well at the moment given he's dealing with the same issue he was dealing with this time last year.  The only difference now is that he is on a couple of new meds and we've increased his water intake significantly - which, apparently, are working to keep the pain he experienced last year at bay.

Because Jack is doing so well, I took a leap of faith this week and booked a bunch of flights to several different events taking place later this year.  I sure hope I didn't just jinx myself!

I plan to attend the Cure CMD family conference that will be held at the NIH in July.  I'm excited to meet the CMD families who live on the East Coast. I'm also going to take advantage of being so close to a couple of my trach-mom friends.  If things go as planned (Ha!), I hope to finally meet my friend Christy!  Christy lives about 100 miles from the NIH - which is nothing compared to how many miles apart we are now.  The only potential hiccup in our plans is that Christy's daughter, Harlie, will be having major jaw surgery at Boston Children's a few weeks before I'll be out there and it's hard to know how long she'll be inpatient following surgery. But, the way I see it (as I see most things in life these days), is, if its meant to be, it will happen.

The kids (sans Jack) and I plan to travel to New Jersey for my niece's wedding in October.  I also have plans to hike the Grand Canyon in May and I'm doing the Disney half in September.  I have a few other trips on my wish list, but haven't booked those yet.  My schedule is full.  It feels good.  To feel like I can actually make plans beyond next week is such a feeling of freedom.  You have no idea (well, some of you do) what it means to just be able to make plans, let alone actually carry them out, when you have a child that requires the level of care that Jack does.  There is always an element of fear - fear that the best laid plans will come crashing down around me at any given moment. But, I'm trying to not allow myself to be held hostage by all the "what ifs" and to just go for it. 

Right now - at this moment, life is good.  I'm taking it and I'm running with it for as long as I can.  At least that's the plan. 

xoxo

Shared Perspective

I'm someone who likes to read articles in medical journals on a variety of different topics. Sometimes I'm looking for articles that are specific to Jack's disease or issue at hand, but mostly I enjoy reading articles that deal with the issues of parenting a chronically ill, medically fragile, disabled child.  I'm always intrigued by studies of kids like Jack and parents like me. I like to see how my experiences line up with the experiences of those similarly situated.  

Recently, I came across a PubMed article that I wanted to read, titled Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities.  Because I could only get the abstract on PubMed, I emailed the physician who authored the article and asked if he could send me the full article. Within fifteen minutes of sending the email, I received a response from this physician via his iPhone that said he was currently out of town for work, but he would send me a PDF in the next day or so.  As promised, he sent me a copy of the article a couple of days later.  Impressive, eh?  

I read the article and it was spot on from my perspective as well.  What was remarkable to me was how some of what parents shared in this study mirrored what I shared in my "Dear Future Physician" letter. Definitely, a shared parent perspective.  It's heartwarming to me that the medical profession even does studies like this - that they care enough about how parents feel to want to ask the questions and make changes based on what they learn.

Here is a link to the ARTICLE if you are interested in reading it.

Segueing from the PICU experience to the hospital experience in general, for those not on Facebook - St. Louis Children's Hospital has been part of a six-part docu-series called "The Frontline for Hope" that "takes you behind hospital doors to share inspiring stories of the doctors, nurses, patients and families" at SLCH. The series follows the journeys of several different patients and their families.  It's a remarkable series that is aired locally in St. Louis, but the 20-minute episodes (sans commercials) are available online the day after the show airs.  As strange as it sounds, watching the series really makes me miss St. Louis Children's Hospital.  Being at the place that has cared for Jack most of his life and where I spent so much time the first year of his life, gives me such a sense of comfort.  Every time I walk through the doors of St. Louis Children's Hospital I feel like I'm "home". I'm at a place where the doctors, nurses and staff are the very best, where they know my child and where they know me.  Becoming attached to a hospital isn't something most people experience (or ever want to experience), but those of you with chronically ill children completely understand where I'm coming from.  It truly makes me sad that we've made the decision to not make any more trips back to SLCH with Jack.

In any event - if you are interested, you can watch the episodes HERE.

And, just because I'm feeling nostalgic, here are a few pictures of Jack taken during his five month PICU stay at St. Louis Children's - where decisions were made that sent us on this journey that is beyond anything we expected, but which has enriched our lives beyond measure.

I think Jack was the only kid in the PICU who was vented via an ET tube and was not sedated. At the time, we didn't realize that the reason he never tried to pull his ET tube out was because he didn't have the strength to do it (the wrist tie-downs weren't necessary, but they didn't realize that at the time either).

The day he was trached 

(if you only knew how long it took me to make that decision - one of the hardest decisions of my life)

All Is Well

Sorry for the break in blog posts - there's not really much to post about.  Life is calm and boring and all is well. 

For my non-Facebook friends -

picture from a good day (which there have been quite a few of lately)

Thanks for checking in.
xoxo

Jack, TouchStones, Road Trip and Birthday

Jack

Word spreads fast. I met with the social worker from the palliative care program today and she said that Jack's pediatrician heard that the kidney stone was back and thought Jack was likely headed for a hospital admission soon.  The social worker wanted to know if a hospital admission was something I wanted or did I want to switch him over to hospice. Whoa! I shared with her that (1) hearing the word "hospice" makes me physically sick to my stomach; and (2) I don't understand why I would switch to hospice at this point. Apparently, what I envision hospice to mean is much different than what hospice in fact means.  I don't yet grasp the advantages of transferring to hospice (which can be a temporary transfer and not necessarily a permanent placement).  In any event, I told her Jack is not symptomatic, he's happy and feeling well and I'm not ready to make any changes.  Of course, she was fine with that and is not pressuring me to make any changes - she's just making me aware of what my options are.  She also told me she'd stick to only using the word "palliative care" for my benefit. :)

As far as monitoring the kidney stone, Jack's urologist wants another CT scan in August unless Jack starts having problems with pain or otherwise.  In the meantime, we take our cues from Jack and just keep on keeping on.

To respond to Jenn's comment on my last post - Jack has only been on Amoxicillin prophylactically for UTIs and no other meds that would contribute to stone formation.

TouchStones

The first year residents at Phoenix Children's are being introduced to the TouchStones program through Ryan House (the residents are required to participate in an educational program provided by staff at Ryan House).  TouchStones was shared with the first group of residents earlier this month and the feedback I received is that my Dear Future Physician letter moved them to tears (that surprised me) and that they appreciated the information provided in the letter.  I don't think there is any question that most physicians inherently know that showing kindness, compassion and care towards their patients is a necessary part of the practice of medicine.  However, what the residents from PCH shared is that while they know the importance of showing compassion, they don't always know HOW to show compassion.  My letter offered some insight into how a physician can show kindness, compassion and care towards patients and their families.

My letter offers insight from my perspective and is only one example of how a physician should treat his or her patients.  I encourage all of you other parents out there to share your insight and feedback with the physicians who care for your children.  After all, doctors can't read our minds. I'm a big proponent of writing letters and giving feedback to the doctors I've encountered over the years.  I can honestly say that 99% of the letters I've written have been letters of thanks for the care provided to Jack.  I think it's important to let doctors know that we appreciate them and share with them those things they do that stand out as exceptional to us.  Contrary to popular belief, doctors are human just like the rest of us and they appreciate hearing that they are doing a good job.  Conversely, I think it's important to provide feedback - in a respectful and constructive way, when a doctor acts in a less than kind, compassionate and caring way.  We all receive feedback in our jobs - both good and bad and doctors should be subject to the same feedback.  I certainly hear from my clients when I don't meet their expectations and, just recently, my assistant suggested that perhaps I should think about touchstones for attorneys. (I'm not sure if that was directed at me or not!)

A perfect example of how sharing a letter can make a difference involves a good friend of mine.  She has an adult son with disabilities and it has been nothing short of a nightmare as she is transitioning his care from pediatric to adult physicians.  Her son was having problems with his shunt and after several surgeries and many visits to the ED, the neurosurgeon told her that there was nothing more he could do for her son and that he'd just have to learn to live with the pain he was experiencing.  Ultimately, my friend found a different neurosurgeon who operated again and discovered that there was, in fact, an issue with the new shunt that had been placed by the other neurosurgeon.  I pushed my friend to write to the prior neurosurgeon and let him know what happened because it's important for him to know that he was wrong in this case.  My friend eventually did send a very well written letter and shortly after she sent the letter, she received a response from the neurosurgeon.  He told her he appreciated her letter and that he would use the information she shared and the experience with her son as a learning experience.  Kuddos to that doctor for acknowledging that he has room for improvement.  If the letter had not been written, the doctor would never have known.

My point being, doctors need our feedback, especially our young doctors who are still gaining experience in not only the science of medicine, but the art of medicine as well.

Go forth and write those letters!

Road Trip

I spent last weekend in Southern California visiting with my friend Anne.  My friend Jenny, from St. Louis, flew out to Phoenix and joined me on the road trip to California. The original plan (made back in January) was for me to go out to California to keep Anne company while she was on bed rest due to a high risk pregnancy.  But, things have been going better than expected and bed rest hasn't been required.  It was fun to get away and spend time with Anne, her husband Joe, daughter Maia and Jenny. The fact that Anne lives near the ocean was an added bonus.

I know it seems like I've been out of town every other weekend lately.  The fact is, I need time away.  The cumulative effect of caring for a medically fragile child for fourteen years coupled with the intensity of last year has drained my reserves.  I'm easily depleted and restoring my reserves is essential to my sanity.  Call me a wimp, but I understand the importance of respite and I take every opportunity I can to make it a priority in my life.  I'm fortunate to have nurses who I trust and who will work extra hours when I'm out of town and a husband who never begrudges my time away.  Not that I need to justify my time away, but I do get the raised eyebrow from some when I skip out of town by myself.  I know Jack appreciates the fact that I take time away because I'm a much more present and happy mom when I get back.

Respite for everyone!

Anyway ....

The ocean view from the second floor balcony of Anne's house

Jenny, Anne (and baby) and me

nothing like the serenity of the ocean to ease your worries

(photo courtesy of Jenny)

Birthday

And last, but far from least ...

Mary celebrated her 20th birthday last week.  If Mary had her way, she'd have skipped 20 and jumped right to 21.  Ah, the naivety of youth - always wanting to speed up the clock.  If they only knew.

Okay, it's almost 1am - time for me to end this and catch a few hours of sleep.  Until next time ... peace my friends.

The Consensus of the Ologists

The nephrologist called me Monday morning.  She told me she had talked with Jack's urologist and he suggested trying to treat the kidney stone non-surgically by giving Jack medication that would increase the acidity of his urine and potentially dissolve the stone.  The problem with this approach is that the drug they use to increase the acidity of the urine causes problems with the lungs.  Not the best side effect for a kid on a vent with diminished lung function to begin with.  But, the nephrologist said she'd talk with Jack's pulmonologist and get his thoughts and then call me back.  She said she was concerned that the pulmonologist would think she'd lost her mind to even consider it.  My concern was whether the stone would dissolve into a fine substance that could easily be passed or would it just break off into smaller pieces that would have to pass.  If it broke apart into smaller pieces, then the pain of passing the pieces of stone would be sheer hell for Jack.

The nephrologist called me back this morning and said that Jack's pulmonologist wasn't completely opposed to putting Jack on the medication, that he said he could follow Jack closely and increase his vent settings to compensate for any breathing issues.  But, the pulmonologist did want the other ologists to be sure that if we went this route, that the likelihood of successfully dissolving the stone was high.  The nephrologist said that the drug they were considering was typically prescribed to prevent kidney stones, not dissolve them and that the urologist thought it might work, but really couldn't be sure. (I give the guy credit for thinking outside the box.) The final consensus of all the ologists is that it's just not worth the risk.

So we are back to trying to determine (1) how to handle the newly formed 4.7 cm kidney stone from hell; and (2) how to prevent the stone(s) from forming in the first place.  I should add that I received the radiologist's report from the CT scan in the mail today and in addition to "extensive calcification in the upper right renal collecting system", there is "tiny new nonobstructing calyceal stone in the upper pole of the left kidney."  So, now we are also dealing with kidney stone formation in the left kidney - which, for some reason, the urologist failed to mention to me (and is the very reason I request copies of all Jack's reports).  In any event, the nephrologist said that one of the meds she put Jack on is doing the opposite of what it should be doing.  So, she's taking him off the one potassium med and putting him on another one.

When I asked the nephrologist if she had any ideas as to why Jack is having so many problems with kidney stones and why the medication that should be working to prevent them is not, her response was "you mean, other than the fact that he is a very sick and complicated kid?".

I think that's code for "I don't have a clue."  

This is where perspective comes into play.  At this moment in time, I don't see Jack as a "sick kid".  I'll give her the "complicated kid" label - although I think how complicated a patient is to a doctor is largely a factor of that doctor's experience (or lack thereof).  From my perspective, for the majority of last year, Jack was a sick kid. Today, he's not in the hospital, he's not in pain and his numbers (sats and HR) are stable.  Does she see him as a sick kid solely because he's on a ventilator?  Or because he's on a ventilator and he's complicated?  The quandary is, in being offended when a doctor who doesn't know my kid that well views him as a very sick kid, I'm contradicting my own position that Jack is now sick enough to transition him to palliative care.  Obviously, I'm still struggling with accepting the decisions I've made.  There is nothing about this journey that has been easy, but decisions regarding Jack's care at this juncture are brutal.  They are as difficult or even more difficult than the decisions that had to be made fourteen years ago.

And this is where I'm incredibly fortunate to have the friendship, support and guidance of several of Jack's St. Louis doctors (current and former).  These doctors have been with us from the very beginning - they know me, they are invested in Jack and they truly care about both of us. As I try to reconcile taking a palliative care approach with how to manage the new/recurrent kidney stones, the insight and concern of these doctors has been invaluable.  I can't say enough how blessed Jack and I are to have such amazing people on our team.

At this point, the nephrologist has done her part (from her perspective) by changing up Jack's meds.  She is deferring to the urologist for any further treatment.  I left a message with the urologist to talk about what the plan is for monitoring the stones outside of waiting for Jack to let us know (by way of pain) that something must be done immediately.  I don't think there is any doubt that the large stone has to be removed at some point. The question is when. The honest answer is, I don't want Jack to have surgery at all, ever.  But, I'm not sure it can be avoided indefinitely.  I also don't want to find ourselves in an emergent situation again and then have to wait weeks to get the surgery on the books because of all the scheduling issues at PCH.  And the bigger issue is, if this stone is eventually removed - how do we keep it from coming back again?  The "your kid is a very sick and complicated kid" response isn't really the answer I'm looking for.  I have to wonder whether I'd get the same response from the nephrologist in St. Louis.  Or maybe my kid really is complicated and there is no discoverable source or treatable condition.  It certainly wouldn't be the first time I've heard that when it comes to Jack.

For now, I guess we wait, watch and take our cues from Jack.  The last week and a half Jack has been doing great and I'm just happy to have a happy Jack.  I'm trying to enjoy the moment and not look too far into the future.  Easier said than done, but I'm trying my best.

I imagine this blog post is way more information than the average blog reader cares to know.  But, I'm a detailed kind of person and that's how I write.  So, if you are still with me - thanks for checking in and thanks for caring.

Not Happy

I left a message first thing Thursday morning for Jack's nephrologist to call me.  I received a call from her nurse letting me know the nephrologist was out of the office, but she would let her know I needed to talk with her.  The nurse first asked if I needed to make a follow-up appointment and I told her that I did not intend on schlepping Jack down to Phoenix Children's for an appointment when the doctor didn't need to see him to answer my questions.  When I didn't receive a call by noon today, I called again and again reiterated that I needed to talk with the doctor.  I received a call from a different nurse in the office wanting to know if I just needed to know the results of the CT scan.  The answer to that question would be "No".  Why these people feel the need to screen my reasons for wanting to talk with the doctor is beyond me, it doesn't matter - my son is the patient, I am the parent and she is the doctor!  In any event, I again explained why I needed to talk with the doctor.  The nurse said he'd pass the message on to the doctor, who WAS in the office today.  It's now after 7pm and I didn't get a return phone call.

I'm not happy - and that is using my nice words to explain how I really feel.

You know, the things I wrote in my "Dear Future Physician" letter back in 2008 have not really been an issue for me personally for many years because I've been fortunate to avoid having to deal with doctors for the most part until last year.  But, as I say in my letter, when I call a doctor and ask for him or her to return my call, I really need him or her to return my call.  And not a week later! There is no excuse for Jack's nephrologist not calling me back today.  Jack's urologist has always returned my calls the same day, even when I'm told he is out of the office.  He usually calls me after 5pm when he is in his car, but he calls me.  It's really okay for a doctor to make a phone call after 5pm. I can hear some of my doctor friends grumbling right now! But really, my friends, put on your parent hat (especially those of you with medically complex kids) and I know (hope) you understand where I'm coming from.

It's Friday evening and I really need to set aside my anger because I don't want it to consume me over the weekend.

'Nuff' said!

It's St. Patrick's Day weekend and there's no time like the present to start celebrating!

I'll leave you with a few of my favorite St. Patrick's Day quotes:

Some may say the glass is half empty,

Some may say the glass is half full,

But the Irish will forever say

"Are you gonna drink that?"

*********************

As you slide down the bannister of life, 

may the splinters never point in the wrong direction!

Slainte´ my friends!

Well, F

I'll refrain from inscribing the word that first came to my mind when the urologist called to give me the results of Jack's CT scan today.

Yes, the thing that showed up on the ultrasound is, in fact, the return of the kidney stone from hell.  It's at least 4cm in size or 80% of the size of the stone when it was discovered a year ago.  The urologist said he's never seen a stone grow back so fast.  The thing acts like it's a tumor.

If you recall, back in November when we got the results of Jack's 24-hour urine analysis, the results showed a couple of things in Jack's urine that were concerning. The most significant finding being a very high oxalate.  At the time, I decided not to pursue further testing because Jack had been through so much already and he was just starting to feel better.  Based on the return of the stone, I think we are going to have to pursue further testing.

I did do some limited research on high oxalate, also known as hyperoxaluria.  There are several potential causes for hyperoxaluria. One is diet, which we know is not the case with Jack (he doesn't eat leafy vegetables).  There is also a rare genetic condition where an enzyme in the liver is defective which causes an increased amount of oxalate to be produced.  I'd be inclined to say that it is very unlikely that Jack would be born with two congenital conditions - Muscular Dystrophy and Primary Hyperoxaluria.  But, the unlikely has been known to happen when it comes to Jack.

Where we go from here is that I hope to talk with the nephrologist tomorrow.  The urologist said he was calling her today and I figured I give her a day before I called.  I'm just hoping I don't get any push back from the office when I call and tell them I want to talk to her today.  I will not wait days to talk with her and I don't see any reason to haul Jack into the office when she doesn't need to see him to discuss what is going on.  I'm guessing she will order the blood work she had in mind last November.  High oxalate can also show up in the blood - which is bad news because it can affect the heart. In fact, Primary Hyperoxaluria can affect heart function.  I'm not ready to make any connection regarding Jack's decreased heart function given that he also suffers from muscular dystrophy, but my interest is peaked.

As far as what we do about the stone at this point in time - we wait and watch.  Jack is much better than he was last week - he's off oxygen and feeling good.  I don't think his most recent episodes of distress were related to the stone.  Until he starts showing signs that the stone is causing him relentless pain, we will monitor the stone every 3 months with CT scans and also check for UTIs on a regular basis.  Neither we nor the urologist are anxious to subject Jack to another surgery.  The only way to get the stone out will be another percutaneous nephrolithotomy.  The stone is too big to break up via the non-invasive lithotripsy.  I cannot even contemplate another major surgery for Jack right now.  In fact, it makes me sick to my stomach just thinking about it.

I will probably contact both the St. Louis urologist and nephrologist to get their thoughts on this.  I don't know either one of them very well and they don't know Jack well, so it's not the same as dealing with Jack's regular St. Louis docs.  But, based on my past experience, they are both very receptive to helping Jack.

On a happier note, we had a great visit with Peggy last week.  We wish she could have spent more time with us, but we'll take what we can get.  I know most of you have heard the story of how Peg came into our lives, but for those who don't know, you can read about our dear friend Peggy HERE

Happy to see each other

Enjoying the beautiful AZ weather

In birthday news, Eric celebrated his 11th birthday on Tuesday - from breakfast to dinner, the day was his day!  The added bonus is that he's always on Spring Break for his birthday and that makes it an even better birthday from his perspective. 

Birthday muffin for breakfast

playing his new game

dinner celebration at the restaurant of his choice 

That's the update from here.  I'm exhausted just writing it all out.  Living it is just about killing me.

Say It Isn't So

Jack had his kidney ultrasound on Tuesday.  You know, the one that was supposed to show that the added meds and extra water are keeping the kidney stone from hell at bay?  Well, maybe not.  When the ultrasound tech said she needed to check with the radiologist to make sure he didn't need additional images and she was gone for well over 20 minutes, I knew something was up.  When she returned and took images from a different angle, I could easily see that something was taking up about 1/2 the space in his kidney.

Jack's urologist called me this afternoon and said he compared the latest ultrasound to the one taken just about this same time last year when the stone was first discovered and they don't look the same.  He's not convinced that what the radiologist is calling a stone is in fact a stone.  They measured it at 4cm already and the urologist said he can't imagine it coming back that fast.  I'd like to believe him.  I want to believe him.  The only way to know for sure is for Jack to have yet another CT scan of his kidney.  I think this will be about the tenth CT scan in a year's time.

Just to be clear, palliative care doesn't mean we won't take action when issues arise for Jack.  It means our primary focus is on Jack's comfort and not the resolution of every issue that arises because of the progression of Jack's disease.  However, doing nothing when it comes to kidney stones is not a comfort measure.  That being said, we know that if, in fact, there is another large kidney stone, we won't agree to having the same procedure done that was done twice last year because it didn't resolve the issue the first time around. But, we'll cross that bridge if we get there.

Jack has had a rough week.  He's still on oxygen and has needed a lot more bagging than he's required the last few months, but not as much as he needed when he was at his worst.  He was miserable at Phoenix Children's yesterday and required bagging pretty much the entire time.  Not fun at all.  We've been giving him morphine almost every day to get him through periods of pain.  It's hard to know the cause of his pain/distress.  The message I got from Jack's nurse earlier this week was "your son's lungs sounds like crap".  He's improved as the week has progressed, but it's possible he has pneumonia. Or is the distress kidney stone or UTI related? (UA results are still pending.)  Or maybe a combination of all of the above?  It's so incredibly frustrating having a non-verbal, medically complex child who is hurting.

Speaking of "bagging" Jack, a commenter on my last post asked what I mean when I say we are bagging Jack.  Note: all my trach parent friends, you can skip this part as none of this is information you don't already know. :)

When we bag Jack, it means we are manually ventilating him with a hand-held ambu bag.  Here is a picture of the ambu-bag/oxygen set up next to Jack's bed.

Bagging someone is similar to giving them mouth-to-mouth resuscitation, except we squeeze a bag to give him air and we are giving him air through his trach and not his mouth. (And, Jack isn't coding at the time we are bagging him. However, if we didn't bag him through his episodes of respiratory distress, he would likely, eventually code.)

Ambu bag connected to Jack's trach

Bagging Jack gives him more forceful and more frequent breaths than he gets via his regular vent settings.  His oxygen sats are usually in the low 80s and lower before we bag him (after having first suctioned him to make sure the desats aren't due to secretions blocking his airway).

When Jack first came home from the hospital after being trached/vented, we had to bag him quite often because we had him off the vent a lot during the day and he would get pockets of collapse in his lungs because his respiratory muscles weren't strong enough for him to adequately ventilate himself off the vent.  When Jack was about three years old, it was clear he wasn't ever going to get off the vent and we stopped trying to wean him.  Once he was on the vent full time, he almost never required bagging. This having to bag Jack all the time is new within this last year.  As you can imagine, it's incredibly stressful having to resuscitate your child on what is becoming a routine basis.  Pretty soon, someone is going to have to resuscitate me because my body can't take much more of this stress!

Anyway, I'm not going to worry too much about the potential kidney stone until I know for sure that's what we are dealing with.  The difference this time around is that in between his episodes of distress, Jack is really pretty happy.  He wasn't that way last year when this whole saga started.  I'm expecting a call from radiology scheduling tomorrow and I'd guess we'll have the CT scan sometime next week.  Stay tuned.

On a completely different note, I just have to say that Eric is such a good sport.  When I drug him out of bed last Saturday morning at 5am to participate in the Ryan House Run, he asked me "Did I agree to this?"  He actually didn't have a choice. I signed him up, told him I needed a partner and he was it! He really did end up enjoying himself, mostly after the race was over.

After the finish of the 5K race

On yet another completely different note, I received paperwork in the mail this week telling me I needed to get Jack registered for his freshman year high school classes.  HIGH SCHOOL?!  It just can't be possible that Jack would be in high school next year.  Jack should be flirting with the girls,  playing sports and text messaging his friends all day long, not struggling to breathe and feel comfortable.  Sometimes the unfairness of it all really makes me angry.  But, I have to let it go because anger just saps my energy and I've got so little energy to spare these days.

Speaking of sapped energy, I must really look like hell because the child cashier at the grocery store gave me the senior discount when I bought groceries tonight.  Seriously kid, I might look tired, but I don't look 55+,  dammit.

Closing on a positive note, Peg arrives tomorrow and we are so looking forward to her visit.  We've not been able to see her much the last few years we've been out to St. Louis because she's been out of town.  Looking forward to our traditionally long talks into the late night hours and the requisite wine tasting that goes along with it.

Onward.

Peg and Jack circa 2000

Bullet Point Update

• Mark has a new job and we still have health insurance (with the same company, so we can go through this all over again in a few years).

• My Sedona get-away was spectacular and it was so great to spend time with my friend Karen.  Two days wasn't nearly enough, but I'll take what I can get.

• Jack's kidney ultrasound is scheduled for next week (love our urologist).

• Eric and I are participating in the Run for Ryan House on Saturday. We are doing the 5k - should be fun.

• Our dear friend Peggy is coming out to Phoenix to visit us for a few days next week. She says she's coming out to see Jack, not me. Too bad, she's still going to have to put up with me because I'm taking a fews days off from work when she is in town! :) (For those who don't know Peg, she is one of Jack's former St. Louis nurses who has become one of my very best friends.)

• Jack is sick. I walked in the door after work last night to find Mark bagging Jack.  Since then, more bagging, increased vent settings, 3L oxygen, high heart rate and a miserable kid.  I'm not sure yet where this is heading.  In the past, it would have been an absolute NO to going anywhere near a hospital when Jack was sick because I had absolutely no confidence in the hospitals here.  But, after all of last year's admissions and making a few key connections with doctors I trust and who can make things happen, I'm not as opposed to taking Jack to the ED if I feel it's necessary. As of now, I don't feel it's necessary.  We started him on Tamiflu.  Our pulmonologist gave us a script with several refills to have on hand.  I'm not sure it's the flu, but I figure it can't hurt to give him the Tamiflu just in case.

Stay tuned.

Onward

Sorry for the long break in blog posts.  Life is busy, but nothing extra-ordinary going on. Well, unless you consider the fact that Mark found out a month ago that he's been "displaced" at work.  That's the corporate world's nice way of telling you -- you are out of a job.  Mark's company has a history of going through massive layoffs every couple of years.  So much of a history, that the company's CEO has made a reputation for himself because of all the layoffs that have occurred during his tenure.  The annoying thing is that they layoff entire departments and then turn around and post a bunch of new job openings and the "displaced" employees are "encouraged" to apply for those jobs.  Mark is fairly confident that he will get one of the coveted spots, but there certainly are no guarantees and we are getting down to the wire with no replacement job yet.  I'm just trying to keep my panic level at a minimum. Aside from the obvious loss of income, the loss of health insurance would be catastrophic. To say the stress level in our house right now is at an all time high is an understatement.

So, I'm going to do the only rational thing to do when the stress level is off the charts ... I'm running away.  For a few days anyway.  I have a friend coming to town from Maryland and we are escaping to Sedona for a few days this week.  We actually planned this get-away back in November, but the timing couldn't be better.  I may never come back.

spectacular Sedona 

(not my photo)

Jack is doing great.  I think it's safe to say that he's stable and feeling well and maybe, just maybe, this year will be an uneventful one.  He does have occasional "episodes" where his color changes pretty quickly and he looks like he's about to faint (if he were standing up).  It usually happens when he's in his wheelchair.  Our guess is that it's heart related.  He eventually recovers and seems to be no worse for the wear (so far).  Next month will be six months post-op from his last kidney surgery, so I'm going to ask his urologist to order a kidney ultrasound - which he originally wanted six weeks post-op, but I thought that was too soon (or maybe, I was just "done" with hospitals and doctors at the time), so I never scheduled it.  I'm not expecting that the ultrasound will show a recurrence of stones, I'd just like to confirm that all the medications Jack is on are doing what they are supposed to.  Plus, I kind of miss all those trips to Phoenix Children's (NOT!)

Speaking of Phoenix Children's  - last week I participated in a palliative care educational program at the hospital as a member of a panel representing the different organizations in the State of Arizona that provide services and support for sick and dying children and their families.  I was invited to share information about the Willow Tree Foundation.  I recognized several of the PICU and airway floor nurses who cared for Jack last year who were in attendance.  One of the airway floor nurses told me that she'd be sending me a lot of referrals now that she knows about the Foundation.  I expect business to pick up significantly after this event, which will be great!

Well, that's about all the news I can muster from my little corner of the world.  Thanks for checking in, thanks for caring.

Onward. 

Of a Few Things, I am Certain

The other night, I woke up around 1am and as I was lying there in bed listening to the rhythmic sound of Jack's ventilator through the monitor, my thoughts naturally went to Jack.  As I stretched out my legs to get comfortable, I imagined what it must feel like not to be able to do that simple act even though your body is telling you it wants to.  In fact, I tried to see how long I could go without moving as I lay there in bed.  I could feel my body wanting to shift positions and I struggled to not move a muscle despite my body's urging.  I didn't last very long before the uncomfortable feelings took over and I had to move.  Try it sometime - see how long you can go without moving.  It's tougher than you think.  You don't realize how much you move to get comfortable without even thinking about it - until you can't.

Needless to say, after failing miserably at my little experiment, the tears came when thinking about how Jack must feel.  I couldn't go back to sleep, so I went downstairs to lay down with Jack in his bed. When I walked into his room, I was quite surprised to see that he was still wide awake.  I had my phone with me because I had intended to listen to music with my headphones on.  Since Jack was awake, I ditched the headphones so that we could both listen to the music.  I have a playlist of contemporary Christian songs that I played.  Jack was clearly happy to have something to break the silence of the night.  I held Jack's hand and tried to catch a few winks.  At one point, I looked over at Jack and saw that he had tears in his eyes. This was not the first time I have seen Jack moved to tears by a song. Yet, I am always taken aback when this child displays such emotion to the words of a song.  It's these moments that quell any doubt as to the depth of Jack's understanding of the world around him.

I've said it before and I'll say it again - Jack's eyes speak volumes.  It's almost frightening.  It's as if he sees directly into my heart, my mind and my soul. The wisdom behind the silence is piercing. There is a spirit about Jack that can't be explained, but can be profoundly felt in moments like the other night.

There are few things in this life of which I am certain, but if Jack has made me certain of anything, it's that there is a God, there is heaven and there are angels sent from heaven to grace us, to teach us and to bless us.  Of what I am most certain, is that Jack is one of those angels.

_________________________


For anyone wondering, the song that moved Jack to tears was "Here With Us" by Joy Williams.

More on Palliative Care

After talking with Jack's new pediatrician about Jack's never empty stomach, she said the problem is a motility issue.  Jack's GI system has slowed down and he is not moving his food through like he used to.  We talked about giving him meds to help with motility, but she said she didn't like to prescribe meds for this unless the child is gagging or throwing up (which Jack is not) because the meds have their own set of side effects.  As you all know, I'm not a big fan of meds either.  She suggested to simply cut out one can of food per day.  I agreed completely.  Jack has been on four cans of formula per day for the last five years.  He is now only getting three cans of formula per day.

The decision to cut back on Jack's food is a palliative care decision.  The focus is not on optimizing Jack's nutrition and growth at this point, it's about optimizing Jack's comfort. This is a hard concept for some to grasp.  In fact, when I mentioned this change to the case manager for our nursing agency, he commented something to the effect that we will have to monitor Jack's weight and if he starts losing weight, we can re-evaluate.  I had to point out to him what palliative care means and that "no", we wouldn't be monitoring Jack's weight.

Remarkably, cutting out one can of food per day has made a significant difference in Jack's level of comfort.  His heart rate had been consistently running in the high 90s to 100s prior to reducing his formula and now he's running consistently in the 50s and 60s.  Not only do his numbers indicate he feels better - he looks better and he's clearly so much happier now that his stomach contents aren't crushing his lungs and heart. It is the little things after all!

As I continue to blog, I intend to focus on and share the palliative care part of Jack's life because that is where we are now in this journey.  I will share the challenges we come up against and the decisions we have to make for others who might be in a similar place now or who might find themselves in a similar situation in the future.  I'm also sharing because I've had more than one person ask me what "palliative care" is.  Pediatric palliative care is a relatively new discipline.  A recent article I read stated: "Pediatric palliative care has grown considerably in the past decade since the Institute of Medicine report When Children Die (2002) that stated that care for children was not 'compassionate, consistent or competent.'  Since that report, there has been a proliferation of pediatric palliative care programs in children's hospitals throughout the country."

Jack's  new pediatrician graduated from medical school in 2000 - she is relatively young and her speciality is palliative/hospice care.  I can't say enough how fortunate I feel that she agreed to take Jack on as a patient.  I can also say, unequivocally, that I'm so ready for someone else to take the lead and direct me when decisions have to be made.  I know some of Jack's doctors who might be reading this will find that hard to believe, as I've always been the person who believed I was leading the charge on every aspect of Jack's care at all times.  But, seriously, this is new territory for me and I'm just happy to have an expert in the field leading the way.

It's not to say that making the decisions is easy.  The guilt is overwhelming at times.  I question whether Jack is really that "bad" that he needs palliative care, or whether I'm taking the events of last year too far.  But, as I was reminded today when chatting over coffee with my "support person" from the palliative care program - Jack has a progressive disease.  To put it bluntly, Jack is going to die from his disease.  There are chronic conditions and there are progressive conditions. Progressive generally includes chronic.  Chronic does not always include progressive.

For all of his life, Jack has been able to do so little from a physical perspective that the progression of his disease has gone mostly unnoticed over the years.  However, last week I decided, for some unknown reason, to watch one of the videos I have of Jack on the sidebar of the blog.  I watched the video titled "Anyway" that I created in 2007.  I have to tell you, it took all I had to hold in the sob that came out of nowhere when I watched this video (I was at work - crying would not have been a good thing!)  Watching the video made me realize just how dramatically Jack's disease has progressed.  Five years ago, when I shot the video, the idea was to show the lack of strength in Jack's arms and hands.  Well, compared to what he has now, he had a tremendous amount of strength.  The decline is tough to see, but it's the affirmation I need to help ease the guilt that goes along with making the decisions that have been made and will continue to be made as we travel "Jack's Journey".

Comparing the "Anyway" video and the short video clip from tonight gives you a glimpse of just how much Jack's disease has progressed.  It may appear subtle to some, but it's really quite significant.

Chugging Along

I've used both this title and this picture in a past blog post.  After six years of blogging, it's difficult to come up with creative post titles.

Anyway,

We are all chugging along here just trying to maintain the status quo and finding the joy in the journey.  I'm a bit manic these days.  Up some days, down others and every where in between.  There is so much I want to share, but when I sit down to write, it's too overwhelming to put into words all the thoughts that consume me these days.  It really is the calm between the storms that can be the more difficult times to get through.

The good news is that things are relatively calm as far as Jack is concerned.  We are struggling with getting all of Jack's food and the extra water in him each day.  His stomach is never empty.  I decided the other night to completely skip his overnight feeding to give his stomach a chance to rest.  I thought about if it was anyone else - someone who could say how they felt - without a doubt, there would be times when they'd say "Enough! I need a break from having to consume all this water".  So, I decided to say "enough" for Jack because he has no choice but to put up with everything we throw at him.  He can't yell at us, he can't run away, he can't do anything to let us know that he's had enough.  Intuitively, I felt like his stomach needed a rest. It's a balancing act to make sure that we do what needs to be done to keep the kidney stones away and still allow him to be comfortable.

Now that we've been out of crisis mode for a few months, I need to attend to the things that were put on the back burner.  Jack needs to see the dentist, it's been years since his teeth were cleaned.  Problem is, they have to put him under anesthesia to clean his teeth and I'm afraid I'll get push back because of his decreased heart function.  It's difficult to know how hard to push because I just don't know how stable Jack is.  I guess I'll cross each bridge as I get to it. Right now, I'm just having a hard time getting us to the bridge!

I'm trying to maintain my sanity by getting back to hiking on Sunday mornings.  It's tough to get up before the sun is up, but it feels great after hiking a good two hours.  I'm also signing up again for the Disneyland half marathon as part of Team Cure CMD.  It looks like I'll only get in one half marathon this year, compared to the three I did last year.  If you recall, I didn't get to participate in last year's Disney half because Jack was taking up residence in the PICU that weekend.  It's the motivation I need to get out a couple of nights during the week and pound some pavement.  Exercise is good medicine for me - although, an ice cold beer every so often isn't a bad option either!

That's the update from here.  I'll leave you with a spectacular Arizona sunrise photo from my Sunday morning hike.

(iPhone photo with purple haze filter)

Thanks for checking in!

p.s. AmyK - please email me. I want to send you something. thx.

A Gift from my friend Jenny

For those not on Facebook:

My friend and fellow blogger Jenny is an exceptional writer.  I am humbled that she took the time to pen a blog post about Jack.  What a gift she has given to me and Jack.  

Click the link to read:

One Beautiful Family 

Random Short Update

I sat down at the computer with the intention of writing a blog post on several occasions this last week. But my mood has been so poor that what I would have written would not have been enjoyable.  This post probably doesn't qualify as enjoyable either.

Nevertheless,

Jack is fine.  He's pretty much the status quo and feeling mostly well.  But, it's a lot of work to keep him that way.  His care is non-stop anymore and I'm tired.  So tired that, like tonight, after filling the bag for Jack's feeding pump with 800 cc's of formula and water, I then proceeded to drop the bag and the entire contents spilled all over Jack's bathroom floor.  Not only did I then get to put together another feeding bag, I got the added bonus of getting to mop the bathroom floor.  Of course, I'm swearing like a truck driver and Mark comes rushing downstairs wondering what the heck is going on.  So, yes, I'm tired. And when I'm tired, I'm not in a good mood. I almost wish I had never heard the words "caregiver burnout".  It's as if I've now been given permission to be in a crappy mood all the time.

For the record, I get tired of hearing myself say I'm tired all the time, but being tired has become as much of who I am as my name.  "Hi, I'm Ann and I'm tired".  Chronically ill kids make for chronically tired parents.  

I need an attitude adjustment and I need some rest.  The attitude adjustment is completely within my control. Getting more rest is not.  Every day my challenge is to let go of the anger, find joy in the little things and accept that the status quo is good enough. Some days are easier than others. Weekends are brutal.    

I hope to have something more substantial and interesting to share in the near future.  In the meantime, I'll leave you with a quote I recently came across in a book I'm reading.  The message really spoke to me (and is helping with my attitude adjustment):

I slept and dreamt that life was joy.

I awoke and saw that life was service.

I acted and behold, service was joy.

- Rabindranath Tagore

_______________________________

And just because I feel like sharing random old pictures of Jack, here is one of my little boy "standing" in his stander.  I think he was about a year and a half old here. Stinkin' cute, isn't he?!

Updated to Add a Picture

In my prior post, I forgot to include my very favorite picture of Jack and Holly taken at our going away party in St. Louis back in 2002.

For a kid who doesn't talk, I'd say there was a very special conversation going on here.

Nurses

When we were in St. Louis in October, one of the people I wanted to see but didn't have the time to see was one of Jack's former nurses, Holly.  Holly was Jack's primary nurse the first year and a half following his discharge from the PICU.  She was young, but had a lot of vent experience.  She certainly knew more about kids/trachs/vents than I did.  Holly took very good care of Jack, despite having to deal with a crazy mother whose only focus was getting my kid off the vent and nothing - and I mean nothing, was going to stand in my way.  (Okay, so I was a little delusional back then.)  There were many times that Holly felt a trip to the emergency room - or at least a call to a doctor, might be in order.  But I was adamant that Jack would be fine and the last thing I wanted was to see a doctor or go near a hospital if there was any risk of an admission.  Holly handled my personality well.  Eventually, she had kids of her own and left nursing all together.  

Over the years, we've kept in touch with Holly and her family.  They come out to Phoenix every couple of years because her husband likes to golf here and at one time, they had family living here.  It's been nice to maintain a friendship with someone who played such an important part in Jack's life.  Holly cared for Jack at a time when he was very fragile.  

When we got back from St. Louis this year, I sent Holly an email and let her know all that has been going on with Jack.  After getting the update on Jack, Holly emailed me to let me know that she and her family had just planned a trip to Phoenix after Christmas because she wanted to see Jack. We were able to visit with Holly and her family this weekend.  It was good for us to see Holly and it was good for Holly to see Jack.  We have been very fortunate to have some of the best nurses care for Jack over the last fourteen years and most of them have become good friends.  

Without a doubt, we've breached the professional boundaries with almost all of Jack's nurses.  How can we not?  These people come into my home day in and day out and they are responsible for keeping my child alive.  Having other people in your home all the time is not easy.  There are days I wish I didn't need nurses.  But I do. I need the help and Jack needs the care.  In fact, these days, I need a lot more help that I am getting.  I've practically begged our nursing agency for more coverage, but they can't seem to provide it.  

I can't imagine having traveled the last 14 years without the help, knowledge and love of the nurses who've cared for Jack.  They allow us to carry on as "normal" a life as is possible under the circumstances and I am thankful every day for them.  

Four years ago, I wrote a more detailed (and more entertaining) blog post about nursing - from my first experience with nursing to how we got to where we are today with our current nurses.  Read it here: NURSES

________________________________________

Holly and Jack circa 1999

Holly and Jack circa 2008

Holly and Jack 2012

Merry Christmas To All and To All a Good Night

Another Christmas has come and gone and fun was had by all! Jack has had a really good month - probably the most stable he has been all year.  His care is beyond physically exhausting and oftentimes I think it would be so much easier to just stay home with him than do all that is required to get him ready and out the door.  But, I know it's important for him to get out and it's good for us to do things as a family - all of us.  So, we just "Do It".  

 CHRISTMAS EVE

Before heading out to my sister's house

CHRISTMAS DAY

at my other sister's house

The boys hanging out watching TV

The "big" kids playing a game 

sisters

Face-timing with my brother and his family 

cousins

I have to share that the three present limit did not put a damper on Christmas.  In fact, Eric told us tonight before going to bed that this was "the best Christmas Ever!"  Sometimes less really is more.  

Well, that's all I've got for now. There is more I could write, but it's late, I'm tired and tomorrow is a work day.  Thanks for checking in on us.  Merry Christmas friends!