Answering Some Questions

In my "Blogging" Post, Dana asked a couple of questions that I thought I would answer.

How do we move Jack?

The answer depends on who is moving him.  Mark moves Jack by physically lifting him out his bed and into his wheelchair (and vice versa).  If I need to move Jack, I enlist the help of Jack's nurse or Hilary or Mary because it's a two person lift for me.  I haven't lifted Jack by myself since at least 2005. Jack's nurses move him using the ceiling mounted lift in Jack's room.  Yes, we should all use the lift, but I don't have the patience for it.  I've used it on occasion when I'm by myself, but I always feel like I'm going to break Jack in half when I use the lift.

Our insurance paid for the lift system.  I could have gotten a track system that would have gone from Jack's room to the family room, but I didn't want to destroy the doorways or have tracks hanging from the ceiling in the other rooms of my house.  Because we have high ceilings, the tracks can't be installed flush against the ceiling, they have to suspend from the ceiling.

Jack's nurse, Kristi, uses the lift to transfer Jack from his bed to his shower chair and then rolls the shower chair into the shower.  We have two slings for the lift, one for his wheelchair and one for his shower chair.  I would have loved to have a track that traveled to the shower, but we were told that they won't install a track in a shower due to safety reasons. In retrospect, I should have pushed the issue because I know people who have tracks in their bathrooms. 

The one thing I do not like about our set-up is that after Jack's shower, Kristi pushes his wet shower chair back to his room and uses the lift to get Jack back into his bed.  The problem is that the shower chair drips water from the shower to Jack's bed.  Not good for the flooring in Jack's room (pergo) and not safe given the flooring in Jack's bathroom (ceramic tile).  Kristi does a good job of drying the floor right away and so far, I haven't noticed any damage to the floor, but I'm sure it's just a matter of time.  

The State of Arizona has a program that paid for converting Jack's tub/shower area into a roll-in shower. The program also paid to put special hinges on several doors that allow the doors to open wider for wheelchairs and it also paid for a cement ramp out our front door.  

Jack's shower set-up

We transport Jack from place to place in our van.  We have a full-size van with a wheelchair lift.  I do NOT like it.  The lift takes up too much room in the van.  But, it's served it's purpose, so I can't complain too much.  For anyone contemplating a wheelchair accessible van -- get a rear entry lift, not a side entry lift.  I can't tell you how many times we are unable to use handicap spaces because there is no space to roll Jack off the lift once it is down. Even wheelchair accessible spots aren't always big enough. Our van has 130,000+ miles on it and we really need a new one, but I can't force myself to spend the $50,000+ to buy one.  Maybe someday ....

Dana also asked about using blankets to cover the vent circuits to keep the water from accumulating.  We've been having a lot of trouble with water accumulating in the circuits even with using the blankets.  I finally just turned down the heater to the lower setting and that - along with the blankets has kept the water at a minimum.

Here is a picture:

You just have to be careful NOT to cover up the peep valve. You can't tell from this picture, but the peep value is not covered with a blanket - it can "breathe" freely. 

Jack does not have a power wheelchair.  He got one when he was five years old and he was doing fairly well with it.  He wasn't great, but he did okay.  I personally didn't like it - it was awful to get in and out of the van - it was too heavy and too big.  In 2005, Jack suffered an anoxic event when he disconnected himself from his ventilator and he never recovered the strength to use his wheelchair after the event.  Although, I think it's the combination of the anoxic event and the effects of Jack's disease that prevent him from using a power chair.

As far as tips for building relationships with nurses and doctors - I think I've just been very lucky. 

I've always had a good relationship with Jack's nurses and I've almost always had good nurses.  When Jack first came home from the hospital, I had nurses in my house who knew more than I did about vents, trachs and Jack's care.  I listened to them, they listened to me and we had a mutual respect from the very beginning.   I'm not sure how or when the patient/nurse relationship became one of friendship, but Jack's St. Louis nurses have truly become my very good friends - especially Peggy.  Now that we don't live in St. Louis, we don't have to worry about crossing any "boundaries" - not that we worried about it much when we lived in St. Louis.  I'm sure it's difficult to build relationships with nurses if there is constantly a revolving door of nurses and when you do know more about your child's care than the nurses.  In my case, Kristi has been with us for eight years and it's not an overstatement to say that she knows Jack as well as I do.  

I also think a big factor with my success with nurses is that I am not home with them, so I'm not there to see every little thing that might annoy me.  Are there some things that Jack's nurses do that annoy me? Yes, but it's never been anything that puts Jack's life in danger.  I have very competent nurses caring for Jack and I'm comfortable leaving him in their care every day.  I don't like having nurses in my house when I'm home.  Not having nurses in my space keeps the tension at bay.  

I don't know that I have any advice for building relationships with doctors because I haven't had a lot of luck with the doctors out here.  Although, I have a great relationship with Jack's St. Louis docs (current and former).  The difference between the doctors here and the doctors in St. Louis is accessibility.  None of the doctors out here will give out their email, so I don't have the opportunity to establish much of a relationship with them.  They won't take the time to get to know me or Jack.  The key to my relationships with Jack's St. Louis doctors is that I had their email from the beginning and I used it - A LOT.  I used it a lot because I hated taking Jack to the doctors (still do) and if I could get my questions answered or orders called in using email and the telephone - I did it.  I asked a lot of questions, I questioned a lot of their decisions, and I vented a lot of my frustration.  They always listened and they always responded. To this day, I don't know why Jack's doctors put up with me - I was relentless!   Jack's situation was unique from the beginning because when he was discharged from the PICU, he was not followed by a pulmonologist, he was followed on his vent by a PICU Intensivist and a PICU Fellow.  Because these docs didn't have offices, I had access to them 24/7 via email and their pagers.  They both got to know me very well and we still keep in touch to this day.  It's important to not be afraid to speak your mind and know that you know your child and what you have to say is important, educated, based on experience and worthy of being heard.  It's also important how you present yourself.   Present yourself with confidence and without hostility or arrogance.    

This is what one of Jack's docs shared with me in an email.  Obviously, it meant a lot to me to hear that I had earned the respect of Jack's doctors despite my "forthright style":

"I'll tell you what you did to earn our respect.  You stood up for Jack. Period.  Never wavered. Always had his best interests first.  Often at the expense of your own.  Your forthright style probably can put off some insecure physicians.  But I think A, P and I only respect you more for your "attitude".  Please don't change - I've said it before and I'll say it again: you are the reason Jack is here and, within his potential, thriving."

And, I've never changed :)  

I could go on and on, but I've rambled on long enough so I'll shut up for now.  

Hope that helps some Dana (and anyone else who might have gotten something out of my ramblings).

Tomorrow is a day off from work .... oh happy day!

A First

Tonight I captured a FIRST .... three of my children engaging in an activity TOGETHER!  This never happens because Hilary is a loner and typically does her own thing and because of the age difference between Eric and his sisters.  To most, this scene would be no big deal, but it truly is a first for me and listening to my kids laughing and having fun together is just so ........... cool!

If only Jack was in the picture holding a Wii remote, it would be the "perfect" first.

Blogging

I had a blog post drafted but then decided not to post it because it seemed too narcissistic. Then again, all blogging is narcissistic to some degree.  When I started this blog, it was never intended to be about me, it was started solely to keep people updated on Jack's spinal fusion surgery in 2006.  I kept it up after that because ... well, because people kept reading.  Occasionally, I'm "struck" with words about this journey with Jack that I feel are worth sharing - words I call "Blog Thoughts".  Writing is very therapeutic and cathartic for me and I write as much for myself as I do for those who read this blog.  However, it's been over a year since I've written a Blog Thought.  I'm wondering if maybe I've got nothing left to share.   Perhaps I've finally reached the point in this journey where I really am okay.  I'm not consumed with how different my life is or what I don't (and won't ever) have.  Granted, it's easy to be in this place of contentment when things are going smoothly with Jack (and nursing and insurance) and, I'm certainly not looking for any drama just to have something to blog about. The problem is: contentment = lack of blogging material.

I know who some of you are who read this blog because you leave comments.  I know how many hits a day this blog gets.  So, I also know that there are many who read this blog and never comment.  It does beg the question .... why do people read this blog?  It can't be because of my words of wisdom or profound thoughts because, lately, I've got none.  I'm not sure my family's everyday life is all that interesting either. So, you ask, what exactly is the point of this post?  I'm not sure I know, but hey ... at least I gave those of you who check in on us something to read! :-)

Seriously, my point is that this blog has morphed into something completely different than what it started out as and I'm not sure where I'm heading with it or for how long.  But, I will say (as I've said before) that I appreciate those who check in on us and continue to check in despite the long break between posts.  I appreciate those who take the time to leave a comment.  Mostly, I appreciate that when times do get tough, there are people out there who truly care.  That, I guess, is why I keep blogging.

Thanks for stopping by.


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p.s. I'm open to suggestions if anyone has something they'd like to know about me, my family or if you have any ideas for a blog post.

All Is Well On The Homefront

We are all well here at the Ranch.

An update on those recovering from surgery ...

Our dog Rylie is up and moving around much better.  She sits at the bottom of the stairs whining because she can't go up. We have a gate that blocks her way  -  and trips me about every other time I go up and down the stairs.  If I'm not careful, I'll end up breaking something and need surgery myself.  For a non-animal lover, I really do think our dog is really sweet. So sweet in fact, I actually let her lick my hand today.  It was gross, but I sucked it up and indulged her  :-) (sorry, I just can't do dog slobber.)

Mary got the half-casts off her feet and she is now in those lovely black boots.  She can now get around by walking on her heels in the boots and has graduated from the wheelchair to crutches.  Her stitches are still in until Monday. Mary has some great friends and cousins who have hung out with her at the house and kept her entertained.  Now that she can get around better, they have been carting her around town and gotten her out of the house.  I'm not sure when she will be able to drive because she can't drive with the boots on.

Here is a picture of Mary being serenaded by one of her friends.  What a nice guy!

Eric started his science camp this week and he loves it.  At first he thought it was going to be like school and he really wasn't interested in going. But, he's been having a blast. Yesterday, he dissected owl pellets.  Do you know what one finds in owl pellets?  Small bones! Very cool (if you are into those kinds of things.)  Next week is robot week at camp.  I can't wait to see what kind of robot Eric creates.

Hilary is enjoying hanging out doing a whole lot of nothing.  I'm already starting to book flights for her return to school in the Fall, Thanksgiving break and Christmas break.  I'm hyperventilating at the amount of money it costs to get this kid from Phoenix, Arizona to Rochester, New York. It's insane.  I remember when my kids were little and I couldn't wait for them to get out of daycare because I was going to save so much money.  Silly me.  Kids aren't cheap no matter what the age.

As for Jack ... oh, how I love this kid.  He demands so little and is always so happy and content.  Just give him a few cans of food a day, keep his airway clear and make sure the TV or iPod is on and he's a happy camper.  The simplicity of his life (his dependence on sophisticated machines to keep him alive aside) is refreshing in the otherwise manic life I live. Jack forces me to stop, rest, listen and soak in the moment.  I need him as much as he needs me.

I'm in the middle of reading two books.  The first one is "Finding Your Own North Star: claiming the life you were meant to live".  I'm still trying to figure out what I want to be when I grow up.  I just hope I can figure it out before it's too late to make a change.

The other book is "The Pursuit of Perfect" - the book I mentioned in a previous post.  This book discusses the difference between being a Perfectionist and being an Optimalist.  According to the author, the  differences between a Perfectionist and an Optimalist is that a Perfectionist rejects reality while the Optimalist accepts it.  The Perfectionist rejects failure, the Optimalist accepts it as a natural part of life and as an experience that is inextricably linked to success.  I am a born Perfectionist (as is Eric).  As the parent of two children with disabilities, it's difficult to ignore my reality.  Acceptance wasn't something that came easily or that happened immediately.  In fact, I rejected my reality for years.  However, with time, I've come to accept my reality because of my children and for the sake of my children.  As you may recall, I wrote about being a perfectionist in this post: "Perfection".

I really like this following quote about acceptance:

When we fully accept reality - the good and the bad, the pleasurable and the painful - we can create and spread affluence; when we accept rather than resist, we become a pipeline, a conduit, through which wisdom and goodness can flow.  


Thanks for checking in my wonderful friends!




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For those wanting to know how my mom is doing -- she ended up back in the hospital for a week with a severe UTI and other GI issues that needed to get resolved. She was discharged on Wednesday and she is now in a different rehab facility that we hope will actually do some rehab. The last place she was at didn't make any effort to get her out of bed or rehab her.  The hope is that she can get to a point in her rehab at the current facility where she will qualify for placement at an acute rehab facility where she will get the intense rehab she needs.  It's been a very tough recovery from a broken leg and she's got a long way to go yet.  But, she's one tough lady and if anyone can get through this, it's her.

Summer Days

Summer days ....

Are spent lying on the couch with your feet propped up, sipping gatorade and getting all the pain meds you want

where no amount of pain or grogginess can keep you from doing THIS all day long ....

staying up way past bedtime, hanging out with sibs and cousin playing Wii games and finally succumbing to sleep on the family room floor with no worries about having to get up early the next day 

ahhhh, the FUN days of summer.  (Although, Mary probably wouldn't call this week "fun" - but she's doing well.)

Wishing you all a fantastic Friday that carries through for a fabulous weekend.  Thanks for checking in!  

Eleven Years

Eleven years ago today, Jack was discharged from St. Louis Children's Hospital PICU after spending almost five months there looking for answers that were never found and trying everything to avoid the inevitable.  

Who knew what the next eleven years would bring.

Eleven years of:

> sleepless nights

> threading a suction catheter down my child's airway

> dumping cans of liquid food into my child through a hole in his stomach

> changing out a plastic tube inserted through a hole in my child's neck

> rinsing my child's snot out of a plastic canister

> troubleshooting a machine that breathes life's air into my child's lungs

> changing trach ties and g-tube dressings

> wrapping a pulse-ox probe around my child's fingers and toes

> listening to the rhythmic whooshing of the ventilator and the rumbling of the suction machine

>  monitoring oxygen saturations and heart rate

>  having nurses in my house and following someone else's orders regarding my child's care

> ordering medical supplies

> telephone calls to DME companies regarding wrong orders

> reading EOBs

> working my way through countless telephone prompts to get to an insurance company representative who talks to me like I'm an idiot

>  meetings with nursing agency reps, department of developmental disability reps and vent dependent program reps

> x-rays, orthotics, splints and wheelchairs

> coordinating medical appointments with work schedules

>  email communications with doctors

> amazing friendships with nurses and doctors who dared to cross the line

> profound friendships with the most amazing women who walk this walk along with me

> experiencing the love, care and concern of the many people who care for, care about and support families like mine

> dashed hopes

> new dreams

> appreciating the little things

>  discovering who I am

>  growing emotionally and spiritually

>  learning

>  standing my ground and

> loving more deeply than I ever thought possible

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The last eleven years have been anything but easy and while I don't believe that things always happen for the best, I do believe that it's possible to make the best of things that happen (to quote Tal Ben-Shahar, author of "The Pursuit of Perfect: How to Stop Chasing Perfection and Start Living a Richer, Happier Life").  I can't imagine a life without Jack and all he has brought to me and those whose lives he touches.

The one thing that has saddened me the most over the last eleven years has been my perception of Jack's quality of life.  His disease has stolen so much from him and there is so much he cannot do.  I often wonder why Jack has to live this life. Yet, not too long ago I had an "AhHa" moment that gave me a whole new perspective on Jack's quality of life.  I was sitting with my mom in the nursing home shortly after she was transferred following surgery.  My mom was in an incredible amount of pain, unable to do anything for herself and unable to communicate anything about how she feels or what she needs.  (My mom has severe aphasia as a result of the surgery to remove a brain tumor three years ago).  Sitting there with my mom, I got to thinking about quality of life and then it hit me  . . .  Jack has a phenomenal quality of life.  He may not be able to move a muscle, is dependent on a machine for every breath and requires assistance with every aspect of his life -- but despite these limitations, Jack is engaged, he is not in pain and he finds joy in his life.  It was the "knock up side of the head" I needed to appreciate that Jack's life has purpose and that I am richly blessed to have him in my life.

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I've shared these pictures before, but I'm going to share them again. Pictures from Jack's discharge day - June 8, 1999.  

  

sporting his new "homecoming hat" - a gift from Dr. Garcia

the obvious connection between Jack and a very special doctor

(Dr. Garcia)

snoozing on the ride home

Another Great Weekend

We spent another great weekend at the Ryan House.  Eric is in nirvana there.   Jack ...  he's not sure yet.  He's happy, but unsure.  He looks at me with these eyes that say "hey, what's up?  I'm perfectly happy at my house, in my bed, watching my movies and having my nurses cater to me!"  He just needs practice  - which we intend to give him a lot of.  We are looking forward to our next visit.

My favorite place to hang out at the Ryan House:

The Sanctuary is incredibly quiet and peaceful and a great place to read and catch a short nap.

On Saturday night we went to an Arizona Diamondback's baseball game. We had to drag Eric away from the Ryan House to go to the game, as he was convinced that baseball is "so boring".

Does this look like a bored kid to you?

It was fun to get out for the evening with Eric and our friends, but I'm with Eric .... baseball is incredibly boring to watch (so much so that we left the game early!)

Our dog, Rylie had her surgery last week and she is slowly recovering.  She was quite pathetic the first few days. The thing wrapped around her waist is holding on a pain patch.  She's now had the patch and bandage removed and she has to take it easy (no running or stair climbing) for 12 weeks.

Mary has her surgery this week.  I borrowed a wheelchair from my friend, as Mary will be without the use of both feet for several days after surgery - she doesn't get her walking boots until next week.  At that, she has to walk on her heels because she can't bear weight on the front part of her foot for a good 4-6 weeks in order to give the hardware time to set in the bone (they are putting plates and screws in the bones of her pinkie toes).

Wishing you all a fabulous week! Thanks for checking in.

Back Relief

This weekend my awesome brother-in-law built us a one foot base for Jack's bed and my aching back is so very thankful.  I have a constant ache in my lower back from always bending over Jack's bed and I was in desperate need of some relief.  My brother-in-law just bought my back at least another ten years.

It's the perfect height -- just below my waist.  

Thanks Jim .... you are the BEST! 

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Two more days of school, our dog has surgery tomorrow and next weekend we're at the Ryan House again.  Busy week.  Hope you all have a great one!

Communication

Much to our dismay, Hilary chooses not to wear her cochlear implant at home.  She tells me she wears it at school, however, I'm not convinced that's really the case.  It totally bums me out when I think of everything we did to give Hilary the best chance at hearing and talking so that she could function in a hearing world.  She, on the other hand, doesn't seem to be on the same page as us.  That's her right and her choice, so I'm done fighting with her over it (although, I'm not sure how she's going to get and keep a job if she isn't fluent in sign and won't wear her implant so she can hear and speak more clearly).

Because Hilary won't wear her implant, we've taken to just writing things down (it reduces the frustration factor immensely).  Eric is thrilled to have Hilary home because she can help him with his video games.  He too, has taken to communicating with Hilary via the written word.  There are pads of paper all over my house with various conversations documented on them.  I found these hilarious, as Eric communicates with Hilary about his game:

Eric to Hilary

Hilary to Eric

Eric to Hilary

I'm thinking this game is a little too advanced for Eric on many levels!

Word of the Week = Surgery

This week included a pre-op visit to the foot surgeon for Mary.  Mary suffers from "Tailor's Bunions" and the pain has gotten to the point where she's ready to have the surgery done.  She's having both feet done at the same time and because summer break is short for my kids, she'll be spending the majority of her summer break off her feet recovering from the surgery.  The bigger disappointment (from Mary's perspective) is that she'll be out of work for at least 4-6 weeks.  Target stands to lose a significant amount of income during Mary's absence, as she spends at least half her paycheck at Target!

As if one surgery isn't enough to contend with, our dog is suffering from a torn ligament in her back leg. She suffered the injury about a month ago, but we decided to wait on surgery because the cost is prohibitive and we were hoping if she rested the leg, it might get better on its own.  Today, she exacerbated the injury and she is really hurting, so surgery is a must at this point.  There go any plans for a summer vacation, but, seriously .... how can you resist this face? 

The kids still have school next week for a few days before summer break begins.  I've signed Eric up for a few summer science camps that look like a lot of fun  - one is a robot camp and he gets to make his own robot to bring home. Can't wait to see that!  Eric is also going to "Camp Peggy" again this year, which he and Peggy are both looking forward to.  I'd love to join him because I really miss Peggy - I'm thinking about it, but haven't made plans yet.  I love summer break because I don't have to drag kids out of bed or make lunches for school every morning.  It's so nice! Next year Mary will be a senior ... makes me sad because before I know it, she'll be leaving home too.  Oh well, I'll get lots of Mary time this summer because she'll be stuck at home with me. :)

Hope you all have a great Memorial Day weekend!  

This and That

I'm not one to stifle my kid's creativity, but really ....

(please disregard the dust)

does his showroom have to be every surface in my house?!

Good thing he's so darn cute!

His first piano recital

(video - it's only about a minute long)

Yesterday was my mom's 71st birthday! She is doing much better in terms of pain and alertness.  She still has a ways to go as far as therapy and gaining use of her non-broken leg. But, she's doing great.  She's one tough lady!

Call me crazy, but I've signed up to walk the Los Angeles 1/2 marathon as part of Team CureCMD at the end of October.  I've just started my training and a friend of mine gave me a training schedule that will (hopefully) help me get in shape so I can finish the walk.  I'm excited to do it and my sisters said they'd walk with me.  I've committed to raising at least $500 for CureCMD, so I will be posting a link at a later time for anyone who may want to support the cause.

Thanks for looking in on us. :)

Sunday Check-In

Wow, it's been an entire week since my last post!  Not really much going on except every day life that's keeping me busy.  I have many ideas about things I want to write about, but I just can't force myself to stay up into the wee hours of the night to write.  Good thing I'm not a professional blogger, eh?

We are in the mist of the last days of school, graduations and graduation parties.  Hilary arrived home today. Mark flew out to help her pack up her stuff and ship it home.  She hasn't been home since Christmas, so it's been a long 5 months.  Hilary says "it's good to be home".

Since I don't have anything profound to share with you, I'll share this great article written in 2008 by Michelle Mayer, a reseacher, educator, mother and wife who was diagnosed with schleroderma.  Michelle was well educated and medically knowledgeable and she writes about being the "Difficult Patient".  I think for those of us with medically involved children, the article could be re-titled "The Difficult Parent" and be spot on when it comes to advocating for our children and what we expect from the medical profession. (and it would likewise apply to anyone who has to navigate the medical maze and advocate for their loved one.)  I especially found it interesting that there are a few points that Michelle makes that are very much the same as what I wrote in my "Dear Future Physician" letter.

It's a very good read.  Here's the link: The Difficult Patient

Wishing you all a fabulous week!

Fun Times!

Ready to show the crowd what he's got 

perfect alignment

Let 'er roll

S - T - R - I - K - E

cheered on by his biggest fan! 

Fun times! 

Resilience and Hardiness

Jack's neurologist shared an article with me titled "Family Function in Families of Children With Duchenne Muscular Dystrophy". (DMD) The article investigated the relationship of child- and family-related variables with family function in families with children who have DMD. However, the different criteria looked at were based on prior studies of children with chronic illnesses other than DMD, so I think its relevance extends to all families with chronically ill children, not just those whose children have DMD.

Caring for a family member with a severe chronic illness has been associated with increased family stress, diminished health for caretakers and increased financial burden. (YOU THINK?) Some families appear to cope with these effects of chronic illness in a child better than others, and the concepts of family hardiness and resilience have been introduced as variables explaining this ability to function effectively in the face of adversity.

Family resilience is defined as the "ability to function well and to be competent when faced with life stress."

I suppose it's a matter of how one defines "function well". I guess it's fair to say that I (and my family) function well . . . all things considered. I mean, I'm not strapped in a straight jacket, rocking back and forth in a padded cell, right?

Hardiness has been defined as "the internal strengths and durability of the family unit and is characterized by a sense of control over the outcomes of life events and hardships, a view of change as beneficial and growth producing, and an active rather than passive orientation in adjusting to and managing stressful situations."

I'm good with all the criteria for hardiness except the part where change is viewed as beneficial and growth producing. Nope, not me. I dislike change very much. However, I have to say that my ability to cope with change has improved significantly over the last eleven years. As one of Jack's docs told me awhile ago "you have mellowed beyond description". That said, I've got some more maturing to do before I see change as "beneficial" when talking about the kind of change that comes with having a chronically ill child.

Other interesting results from the study:

*the child's level of dependence was not significantly correlated with the family function.

Which means you don't "win" if your child has a higher level of dependence. (not that it's a contest or that you "win" anything). Chronically ill children = family stress regardless of how involved they are.

*parents whose children were diagnosed at a younger age did better because they had more time to garner information regarding the disease and how to cope with its effects on the family.

The ultimate findings of the study indicate that as family hardiness, caregiver health and family support scores increase, family function increases.

The study concluded with the statement that further research into the factors that promote hardiness, health, and support could assist in designing interventions to assist families to maintain and improve their level of function.

From my perspective, the "findings" were obvious and shouldn't have required a study to ascertain. They should have skipped the first part and jumped right to finding factors that promote hardiness, health, and support. Although, I think that hardiness and resilience are innate and aren't traits that can be taught or acquired. The factors we can control are health and support.

So to all my resilient and hardy friends, thank you for your faithful support. As for the health part of the equation .... it's time for me to head to the gym! 

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Resilience is rooted in a tenacity of spirit - a determination to embrace all that makes life worth living even in the face of overwhelming odds. When we have a clear sense of identity and purpose, we are more resilient, because we can hold fast to our vision of a better future.

For Your Evening Entertainment

I realize for many of you, it won't be evening when you read this ... but, it's evening here in the Valley of the Sun, so just go with it :)

Photo and video editing at www.OneTrueMedia.com

Jack had a couple of doctors appointments today. The first was with his pediatrician who he hasn't seen in a year and a half. Because his birthday falls during cold/flu/H1N1 season, I decided to wait to take him in for a "well check" until now. It's really a waste of time to take him in, but his pediatrician signs off on his paperwork with the nursing agency, so I think it's only right that he see him on occasion. I asked if he could do some routine blood work because his nurse practitioner had luck getting blood last time we were in. Unfortunately, she was off today, so he asked one of the other pediatricians in the office to try because, supposedly, he is good at getting blood. He took one look (spent maybe 30 seconds looking) at Jack's arms, hands, feet and said he wasn't even going to attempt it. Chicken! I dread the day Jack ever needs a blood draw because he has zero venous access.

Next stop the orthopedic doctor. We wanted to get an x-ray of Jack's spine because we feel like his scoliosis is worse despite the fact that he is fused T-2 to sacrum. Every time our local ortho sees Jack's x-ray he says "man, that's a lot of screws". The good news is that all the hardware looks good and is in place. The bad news is that Jack's left hip is now completely out of socket - which is why his scoliosis looks worse. His left leg is significantly longer than his right leg. It's just painful to see on x-ray. I don't understand how it's can't hurt, especially when he's sitting in his wheelchair. But, it doesn't seem to bother him.

Two doctors appointments, two times lifting Jack out of his chair and UP onto an exam/x-ray table and then back into his chair and now I need an orthopedic doctor for my back!

Hopefully, we're done seeing doctors until October when we make our biennial trip to St. Louis. All our appointments are scheduled and October will be here before we know it. Doesn't it seem like we just went to St. Louis? I swear, times flies .........

Ciao my friends!

Happy Mother's Day

Albeit, almost over, Happy Mother's Day to all. My Mother's Day was nice. I started by having breakfast with Eric, then exchanged a few texts with Hilary, went on an afternoon bike ride with Mary and finished off the day by going on an evening walk with Jack. In between, I worked out at the gym, cleaned house, did laundry, did some Target shopping and read a few chapters in my book. All in all ... a good day.

Yesterday morning, I got out my camera and captured a typical Saturday morning in the Life. Mark was sleeping (he worked Friday night) and Mary was at work. It's usually just me and the boys hanging out together on Saturday mornings. There's nothing particularly exciting or interesting about this video, but hey .... I'm desperate for blog material, so this is what you get :)

Make video montages at www.OneTrueMedia.com

Update on my mom: she was transferred to a sub-acute facility (aka: nursing home) this afternoon. She won't get as much rehab therapy as she would get in an acute facility, but due to all her other issues, she needs more care than just rehab for her leg. She's still having issues with low platelets that wasn't addressed before she was transferred. Not sure where this is all heading, but hopefully, she'll bounce back like she always has.

Have a great week my friends!

New Blog Look

I figured since the blog has become more than just about Jack, it was time to change things up a little to add those included in the "and then some".  I guess this means I'll still be blogging for a while longer.  :)

Thanks Danielle (aka The Design Girl) --  I love it!

Wednesday Update

My mom finally made it to surgery at 4pm today.  We had to fight to get them to transfer her to the orthopedic floor following surgery (she was on the medical floor pre-surgery).  It is ridiculous what we've had to fight for when it should be a no-brainer.  Thankfully, the surgery is over and we now hope and pray that the recovery goes smoothly and she can get the heck out of that hospital never to return again.

This medically advocating is exhausting and I'm ready for a break (no pun intended). 

Thanks all for your concern for my mom.

My Mom Update

I was reminded (seems I need a lot of reminding lately) that people other than those who just know me through Jack, read this blog.  After my DNR post, several phone calls were received regarding my mom.  So, for those who know my mom, I am updating.  The DNR order has been removed. My dad was confused as to when was the appropriate time for such an order and this is not one of those times.

Today was, quite frankly, the day from hell.  My mom is two days post broken femur and she still hasn't had surgery to repair the break, nor has her pain been managed at.all.  I spent a good part of the day trying to get my mom transferred to the hospital where she's had her brain surgeries -- a much better (in my opinion) hospital than the one she currently is at.  I could spend paragraphs explaining all that was involved in getting this accomplished, but at the end of the day, it was ultimately decided to keep her where she is.  They tried to do surgery tonight, but discovered -  as they were practically wheeling her into the OR  -- that her platelets are too low.  Surgery has been cancelled.  Has a transfusion been ordered?  Supposedly, but not until the morning (why I don't know).  They now (after two freaking days in the hospital being in incredible pain), have a pain management plan in place (at least in theory, I'm skeptical).

I've said it before and I'll say it again ... hospitals are very dangerous places.  We have someone with my mom as often as we can, but it's tough to be there all the time with our schedules. I'm just hoping and praying she has the surgery tomorrow and that she survives the recovery.  It's a huge surgery because the break is so bad and her recovery will be extensive.  To give you some idea as to why the break is so bad -- my mom had knee replacements in both knees. She fainted and fell directly on her knees.  Knee replacement hardware includes a screw that goes into the femur. Well, when you fall on your artificial knee, the screw pretty much shatters the femur.  Like I said, it's a bad break (the x-ray is painful just to look at!)

That's the update from here.  Hopefully tomorrow will be a day of forward progress. Thank you for checking in, thank you for caring.

It's My Birthday

It's 2:30am on my 49th birthday and I can't sleep.  My mom fell last night, ended up in the ER, is now in ICU.   My sister just texted me to tell me they just put the purple DNR wristband on my mom. There's no sleeping now.

As I walk through the quiet house full of sleeping residents (save one), the only thing I can hear is the swooshing of the ventilator keeping my sweet Jack alive.  I can't help but wonder, will there ever come a day when I have to decide purple wristband for him?  Damn, life is complicated and complex and confusing.

As I wandered down the stairs, I was greeted with these:

and three really great birthday cards from five really wonderful people in my life.

On the other hand, life is beautiful and fun and great!

Happy Birthday to me.

(I really need to get some sleep. I promised myself a 5am workout at the gym and it's now T minus 2 hours .... think I'll make it?)

*************
Postscript: never made it back to sleep, but did make it to the gym :)

Thank you for the birthday wishes and well wishes for my mom.  You guys are the best!

Sunday Morning Golf

I was reminded by my mother-in-law the other day that she reads my blog (she is 90 years old and uses a computer -- impressive, eh?) She told me she enjoys seeing the pictures I post.  These are for her ... the boys out golfing on a Sunday morning.  These are from last Sunday and yes, Eric's clubs are too small (time for a new set)!

Happy Sunday!  

More Conversations

More of my conversations with a doctor.  I'm so blessed to have such an exceptional group of doctors on our team, who have stepped beyond the walls of the hospital to offer care, compassion and support.  I love these docs and I truly owe my sanity to them. 

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5/24/01

Hi -

I thought I’d share the results of Jack’s tests with you. The fluoroscopy shows that his right diaphragm is still not working – i.e.: the phrenic nerve hasn’t regenerated enough to overcome the plication. The left diaphragm is working, but not as good as it could. Dr. S is supposed to talk with the people she knows in Chicago about the phrenic nerve pacer, but I haven’t heard back from her yet.

I had requested the chest CT to see if there was any compression or compromise as a result of the right aortic arch or any changes following the division of the ring. Everything looks fine in that regard.  Dr. S said the radiologist noted the presence of bronchiectasis, apparently a new finding. 

Jack’s neurological antibody analysis done by Dr. P all came back normal. This is one instance I was hoping they’d find something.

All the tests I can come up with have been done and we’re no closer to any answers or solutions than we were before. 

I’ve got Jack set up to try the Pulmonetics vent.  I had to get Dr. S to place an order for the vent.  I get the impression that she is not happy about it. Her favorite vent is the Legacy.  I don’t think she is one for change, but hey - I’ve had to deal with a considerable amount of change in my life, she can deal with some too.  I’ll let you know how it goes.

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5/24/01

Ann,

Thanks for keeping me posted about Jack’s tests. I’m not sure what to make of the continued lack of phrenic nerve function – did Dr. S talk with you about this? I’m no expert, but if the phrenic nerve is not functioning, how will pacing the nerve help? I thought the nerve had to be intact for this to work. 

It’s good the chest CT showed no compression.  Bronchiectasis as an isolated finding – depending on its severity, is hard to interpret.

I know it is incredibly frustrating not to have ultimate answers.  Even in 2001, patients have problems that have either never been seen before or no one has been able to put enough of them together to label them and get a new diagnosis understood.  If it helps at all, if there was a treatable problem, it would have been identified a long time ago. You have been giving him the best medicine there is for whatever his “true” problem is: love and supportive care.  He will grow to reach his fullest potential because of your incredible devotion to him.  There is no medicine or operation that can come close to what you do every day for him.  I’m not just trying to be nice; this is just the simple truth.

Keep me posted.

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5/25/01

Regarding the phrenic nerve pacer – I don’t know if it will help.  Dr. S. did say that if his nerve was completely severed than it wouldn’t help, but it’s only partially non-functioning.  I know that Jack’s phrenic nerve paralysis is not congenital,  it is a post vascular ring division issue and Dr. C did and EMG and determined that the nerve was not totally non-functioning.  Based on what I’ve read, when there is paralysis to the phrenic nerve following chest surgery that most the time the phrenic nerve will regenerate over time – in one study all the kids got their function of the diaphragm back anywhere from 1-7 years. 

I don’t know if the phrenic nerve pacer will help, but I didn’t think it would hurt to ask. I know he doesn’t fit the criteria for the typical user, I’m just looking for ANYTHING that might get him of this #$*&@ vent! The ultimate solution is going to be time and I just need to accept that.

Have a good weekend.

Ann

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5/25/01

Ann,

I see the point about the phrenic nerve issue – I ran into Dr. S today and she said the same thing – it couldn’t hurt to investigate it.

It’s easy for me to say this because it’s not my own kid on the machine. And of course, you’ll take this in the partial light manner in which I offer it. You need to make peace with the ventilator.  The ventilator can be your friend.  

Ok, so it’s a silly idea. Here’s another one. Write a book about all of this. Get your feelings on paper and organize and explore them.  You have learned so much you don’t even realize.  Share what you’ve learned with others.  The worst that could happen is that it may not get published, but then you could publish it yourself on the Internet.

Just a thought. Take care.

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5/26/01

Okay, this will be the last time I will bother you, but I have to respond.  I really appreciate your words of encouragement.  It really helps.  But, I won’t even go there when it comes to taking care of a child on a vent.  There are issues beyond just taking care of Jack and they are usually the more difficult ones, e.g. insurance and equipment issues.  I just found out Friday that I am going to have a battle with my insurance company to get the Pulmonetics vent. They think it’s merely an issue of convenience, so they aren’t going to approve it.  Also, how can it be good for someone to be mechanically ventilated? Granted, it beats the alternative, but how is his life expectancy affected from having air forced into his lungs by a machine?

I’d love to write a book but, before I can – you are right, I have to come to peace with the ventilator and I’m not there yet.  If I do write a book, I would direct it to the medical profession to give them some insight on what it’s like after they send the kid home. You’ve taken the time to listen and find out, most doctors aren’t that caring.

Ann

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5/27/01

Ann,

You’re not bothering me. I’m learning more from you than you are from me in this dialogue. I’m sure that I have no clue about the myriad of “peripheral” issues involved with caring for Jack, but that’s why I admire and respect what you’ve been able to do all the more.

There is no doubt it is better to breathe naturally than have a ventilator do it for you or help you. But, in general, as long as the oxygen concentration is not high and the volumes and pressures aren’t either, there is not felt to be any real damage to the lungs.  Certainly babies who need chronic ventilation because of severe lung disease are able to heal their lungs and grow new lung while on ventilators.  Patients on ventilator may have a shorter life expectancy because of the underlying condition that makes them need the ventilator – it’s not necessarily that the ventilator itself is the danger.  The one hole in my reasoning, of course, is that the artificial airway bypasses the normal protective mechanisms of the upper airway, so patients with tracheostomies may be more prone to respiratory infections.

If you ever write a book, I bet it would be valuable to both physicians and families.  And, I’ll be the first in line to get my copy autographed by you.

Hope you have a chance to relax this weekend. 

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6/2/2003

Jack is scheduled for his first outpatient procedure in this medically challenged City next Friday.  He’s having another bronch by a new ENT that I’m not sure I like yet.  My biggest worry is with the anesthesiologist. Jack’s last bronch was done bedside in the PICU by the pulmonologist and he never even increased Jack’s rate after he was sedated. He just gave him 8L of oxygen instead – I guess to make sure his numbers looked good. Am I safe in assuming the anesthesiologist that will be sedating Jack this time will know to increase his rate when he is sedated? The problem is that you taught me the right way to do things and now I know too much.  Wish us luck.

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6/3/2003

Ann,

I’m sorry that you have gained such trepidation of the physicians there – not that it is an undeserved feeling, but I’m just sorry about it.  After all this time you have learned a lot medically, but you’ve also learned a lot about diplomacy with doctors.  Gently, without fear or threat to your voice, speak with the anesthesiologist and tell him/her upfront about your concerns.  If he/she is a decent person, they will at least listen politely and then take your thoughts into account as he/she cares for Jack. Jack has survived some sub-star docs here – he’ll get through the procedure with your help. Now, you just need someone to help you!

I still have lots of Jack’s pictures up in my office and I occasionally use the picture with him and his baby brother chewing on his vent tubing in lectures I give – of course I don’t mention him by name, but I note how rewarding, difficult and frustrating patients can be!

If there’s anything I can do, let me know.  I’m going to Boston for a long meeting on Thursday but will be in touch by email.

__________ 

6/3/2003

Thanks. I always try to maintain a respectful and non-threatening approach with doctors, but you’d be amazed how his or her attitude changes once I start asking things that are outside of the box of what they expect me to know or discuss.  I would think that if you specialize in kids, you should know that you also have to specialize in their parents.  That, I believe is the biggest difference in my experiences here in Phoenix compared to STL.  I have no doubt that these doctors are competent in the science of medicine, they just have a long way to go with respect to the art of medicine.  I also have high expectations when it comes to doctors based on the (mostly) outstanding experiences I’ve had in STL. 

I’m glad you are able to use Jack as one of your positive experiences in your career.  I think he definitely qualifies as “rewarding, difficult and frustrating” – that about sums it up!

Good talking with you …. Enjoy Boston.

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6/3/2003 

I just wanted to add that my medical knowledge is not limited solely to my experience with Jack.  It was always my intention to go to medical school and I spent most of my weekends during college volunteering in the emergency room of a Level 1 trauma center here in Phoenix. So, long before Jack became a resident of the PICU, I already knew the jargon and was not unfamiliar with medical technology or medical professionals.  Unfortunately, I ended up on the wrong side of the white jacket (sounds like a book title, huh?)  I used to think doctors were just short of God before I became the parent of a child who can’t be “fixed” by any doctor, no matter how hard I try.  So, I admit that I have an underlying disappointment and frustration with doctors to begin with and, therefore, it doesn’t take much to push me to the side of disliking a doctor rather than liking a doctor.  But, I also know that I can’t afford to alienate every specialist in this City because they really are in limited supply.  Therefore, I can assure you that I take a non-arrogant and non-threatening approach with docs.  Then, I come home and take a Xanax.  

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6/3/2003 

Ann,

You needn’t worry – I know (intellectually, not emotionally) what you have been through with Jack, and you’d have to be a truly, gullible unthinking person not to have a “healthy” (pardon the pun) skepticism of doctors and the medical world.  I always thought you handled yourself splendidly with everyone here and it sounds like you are being your typical diplomatic self there too.  I may be in the minority, but I don’t like people who just roll over and accept everything doctors tell them – it is people who raise questions and voice concerns that keep us thinking and on our toes.  And if we truly believe we need to continue to challenge ourselves to improve- and we surely do – then that kind of interplay is both good and necessary.  You have always been Jack’s best advocate and you always will be. So, don’t take too much Xanax! 

Good luck and keep me posted.

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8/9/2006 

When you get a minute, can you read the latest update on Jack’s  blog. I need your thoughts.  I’ve about had it with the orthopedic team. My experience with surgeons has always been with the CT surgeons and, from a parent’s perspective, they have always been wonderful to deal with. I am beyond pissed at ortho thinking they can make decisions without my ok.  In addition to the broviac, there is also the possibility that they will have to drain some fluid off of Jack’s left lung and I want CT to do that – not the general surgeons.  Dr. H is available and willing to handle this. Am I being unreasonable to insist that CT do it? I’m told that because ortho called the general surgeons – it is now political if they are called off.  I still think it is my decision, not orthopedic’s.

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8/9/2006

Ann,

You are spot on – as usual – that this is political.  The usual way we do things is that if the CT surgeons already have a relationship with the patient and family, they should be the ones to do the broviac.  Assuming they are willing and it certainly sounds like Dr. H is so inclined.

The broviac will accomplish a lot – in the short term. The biggest immediate benefit is the ability to get blood without sticking Jack.  Whether he needs longer term antibiotics or not should be something decided upon between Ortho and ID – since they were consulted. 

I can’t speak for orthopedics, but I can understand their anxiety. They just put a lot of time and effort – and hardware – which could get infected if he does have some circulating bacteria that is not adequately treated – into Jack.  The somewhat intellectual approach of ID – stop antibiotics and see if anything grow – is potentially a risky venture as far as they are concerned.

Sounds to me like Orthopedics and ID need to have a serious chat, weighing risks and benefits of the various approaches.  Maybe they’ve done that and this is the decision.  Meanwhile, you have every right to suggest that yet another surgical service is not needed, since Dr. H knows Jack and is willing to perform the broviac, if indicated.

I’m sorry you’re all having such issues. Though it may not be of much consolation, given his history and status, things could be much worse.  You knew this would be a big deal and speed bumps (OK, six foot high walls) were to be expected. Please try not to let what you want and/or wish to happen interfere with the decisions needed to see him through the rest of this. You’ve come too far already.

____________________

6/2/2005

. . . 

The other day, one of the young fellows I am training asked me what it was like to have children and take care of critically ill children day in and day out. I reflected a moment and then told her that we eat ice cream at my house for breakfast.  Life is too short and too precious, our world's can be turned upside down with a moments notice and what I see happen to other people's beautiful children could just as easily happen to mine. As a result, if my girls want to eat ice cream for breakfast, we do! 

Both you and Jack made me a better physician and a better person.

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Copyright Ann F. Schrooten 2010 All rights reserved.