What a Week...

This is old news for those who follow me on Facebook, but ....

We picked up Jack at Ryan House Monday afternoon around 3pm.  Jack look tired and a bit out of it, but, for the most part, he held up well during our absence.  The simple fact is, there is no place Jack can go that is as good as home.  I struggle with the knowledge that Jack is happiest at home and knowing that it's important for the rest of us to get away from home.  There is no "win-win" situation.

Tuesday, I ran around in the morning getting ready for my CHOC Clinical Grand Rounds - TouchStones of Compassionate Care presentation the next day.  I was flying out to LA that evening because we had to be at the hospital by 8am.  When I went into Jack's room around 2pm, I took one look at his heart rate and face and I knew there was no way I could let whatever was going on, go on for another 24 hours.  I told Kristi to get Jack ready, we were heading to the emergency room.  Now, those who know me know that it takes a LOT for me to agree to go to an ER with Jack.   I simply don't "do" ERs or hospitals.   But, my mommy-gut told me that whatever was going on with Jack was internal.  I was thinking appendix or gall bladder.

When we got to the ER at Phoenix Children's the waiting room was jammed packed and it was 2:30 in afternoon!  I told the woman who was registering us that there was no way I was waiting in the waiting room with Jack, when they were ready for us, we'd be waiting outside.  She showed me to a quiet area near the waiting room instead.  They took Jack back within a half hour and we saw the resident fairly quickly. She was very good, listened to what I had to say and started the process of trying to figure out what was going on.  The first thing they discovered fairly quickly was that Jack had a urinary tract infection.  With that information, they did an x-ray of the stomach and saw a large stone in Jack's kidney. From there, they did an ultrasound of the kidney and determined that he had something called a staghorn kidney stone. They admitted Jack with what I thought was the intention of dealing with the stone.

My experience with the ER at Phoenix Children's was excellent and I was optimistic that I had made the right decision to come to this hospital. (There is another Children's Hospital much closer to my house, but my past few experiences with Jack in their ER and PICU have not been good.)   Jack got to his room around 10pm that night.  We saw the urologist in the morning and he said he was going to order some tests and once he got the results of the test, we'd know more about what needed to be done.  This was the beginning of the end of my good experience with Phoenix Children's.  Actually, almost all the people I dealt with were wonderful and caring and treated Jack and me well.  The problem was not the people, it was the delivery of health care.  The tests were ordered Tuesday morning.  I was later informed that Jack couldn't get on the schedule for two of the tests until Thursday and he couldn't get on the schedule for the third test until Friday.  So, we were to sit in the hospital and wait for three freaking days to have all the tests done ... and we were inpatient!  I couldn't believe it.  The general peds attending's comment to me was "this is a big hospital with lots of kids."  And your point is?  Let's just say, she was not the brightest light in my book.  I was NOT happy and was not shy about sharing with anyone who entered the room how insane it was that a child who is inpatient had to wait three days to have relatively routine tests done.  I then found out that after all the tests were done, they wouldn't even be able to get Jack on the schedule to have the kidney stone removed for 2 to 3 WEEKS! Is that not insane?  By Thursday, I was ready to just leave and come back for the final test as an out-patient.  Ultimately, they got enough information from the two tests they did on Thursday that they didn't need the test scheduled for Friday. So, they discharged Jack on Thursday afternoon.

The kind of kidney stone Jack has can cause damage to the kidney and the loss of a kidney is a real risk.  The test showed that, as of now, the stone is not blocking the flow of urine and the kidney is not damaged.  So, we wait to get on the surgery schedule because it is not the kind of kidney stone that can be passed - it has to be removed.  To put things in perspective, most kidney stones are measured in terms of mm.  Jack's kidney stone measured 5cm x 1.4cm x 1.9cm.  I'm fairly certain that at any of the top Children's Hospitals, including St. Louis Children's Hospital, Jack would have been admitted and the stone would have been removed before he was discharged.

In any event, we are home - Jack's pain is manageable and we wait to find out when Jack can get on the schedule.  Tomorrow, I get on the phone and do what I can to speed up the process.  I also call the urologist's office in St. Louis and find out how they would have handled this issue if Jack was in St. Louis and what do they think about having to wait 2-3 weeks to have the stone removed.

Jack enjoying some time with the hospital therapy dog. :)

Adding to the crappiness of the week, I missed participating in the presentation of the TouchStones program at CHOC.  I heard that it was well received. Another really cool thing I heard was that the stones were placed in separate bins (Kindness, Compassion and Care) and the doctors each got to pick which stone they wanted.  One doctor said he was okay with "caring", but needed to be more compassionate, so he chose the "compassion" stone.  Another doctor picked a stone, left and then came back and exchanged it for another stone.  Point being - that it really got the doctors to reflect about what areas they personally needed to work on.  How cool is that?  Who knows where the CHOC roll-out will lead us, but I'm excited about the possibilities.

I can now share the video, so here you go:



Onward my friends ....

I Think It's Time for A Blog Post ...

I feel bad that it's been so long since I've posted.  It's not for lack of anything going on, that's for sure.  Let's see, where did I leave off?

Eric's birthday, I believe.

I forced asked Eric to let me take his "10th birthday" pictures.  He wasn't thrilled with the idea, but he did his best to cooperate.  He prefers to not wear his glasses - he says he looks like a "nerd" with glasses.   He's now at the age where he's concerned with how he looks and he has more input into what he wears and how his hair looks.  He cracks me up.  He doesn't like the military-style hair cut that I prefer -- short sides and back.  He wants his hair to be longer because, you know, "everyone" has their hair long.  I'll concede on not having to have super short hair, but what you see below, is as long as it's going to get!

My handsome 10 year old

The birthday party was a success and Eric's friends donated over $100 for Ryan House.  Everyone had a great time.  I heard one kid say that it was "the best birthday party" he has ever been to.  Now, I seriously doubt that, but it's nice to know the kids had fun.

The Chair of Honor

a crazy group of boys

A few days after Eric's birthday, we headed to California for some R&R.  Jack was left in the loving care of the staff at Ryan House.  I was extremely nervous about leaving Jack at Ryan House this time, not because I was worried about the care Jack would receive while we were out of town, but because something is going on with Jack and he's not been feeling well for awhile now.  With a non-communicative child, it's so incredibly difficult and frustrating to try and figure out what hurts when he can't tell you.  Jack has been having episodes of high heart rate and he acts like something hurts him - based on the expression on his face.  Sometimes his O2 sats are affected, sometimes they are not.  I don't think it has anything to do with the new vent.  I've noticed that the episodes are often triggered after he is fed.  I called his pediatrician and asked him if it might be reflux.  He wants us to get Jack's g-tube site looked at first.  If everything checks out there, then we'll see a GI doc.  My "gut" tells me that whatever is going on has something to do with Jack's gut.  We couldn't get in to see the pediatric surgeon (the doctor who manages the g-tubes in this City) until next week.  In the meantime, Jack's pediatrician prescribed Prevacid and we are giving Jack Motrin on a regular basis - which seems to help with the pain (although, too much Motrin can lead to its own set of GI issues).  The other thing we are doing is slowing down Jack's feeds and not bolusing in as much as we typically do.  He's still having episodes of high heart rate and pain, but we are managing it as best we can until we can get to the bottom of it.  Based on the reports I'm getting from Ryan House staff and my friends who have check on Jack while we are out of town, Jack continues to have his moments of high heart rate and pain, but they are managing it with Motrin.  Jack has also been sleeping more than is typical - and that worries me too.  Overall, though, he has been happy and doing well while we have been gone.  We get back home tomorrow and I'm so anxious to go get him and take him home where I know he is most comfortable.  I just hope we can get some answers soon because I can't take seeing Jack in pain and not knowing why or how I can make it better.

Despite stressing out about Jack, we tried our best to give Eric a fun vacation.  We drove up to Monterey and spent time at the Monterey Aquarium and tried to enjoy the beach.  It's been extremely cold and windy, so our beach-front vacation hasn't exactly gone as planned.  I have enjoyed getting to bed early and being able to sleep in.  I feel rested, but so ready to get home and see Jack.

This picture makes me laugh.  Eric says "I don't even know who Forrest Gump is", but if this isn't the perfect Forrest Gump face, I don't know what is! 

Bubba Gump's Restaurant at Cannery Row - Monterey, CA

At the Monterey Aquarium

Cool sea horses

and jelly fish

Freezing our butts off along the Carmel ocean front

and last but not least ....

Today is Mary's 19th Birthday!  She was not happy that we aren't home to celebrate it with her. But, I hear that my sisters and their families took her out to dinner tonight.  So, I think she still had a good time despite our absence.

Thanks for checking in and have a great week everyone!

Vent Update

I think the words "if it's not broke, don't fix it" might be appropriate when it comes to switching Jack to a new vent.  The transition has been anything but smooth.  We went back to the pulmonologist last Wednesday for Take 2.  This time, we had all necessary pieces (for the most part) for the vent and we kept Jack's mode of ventilation the same as it was on the LTV.  He seemed to do better, although his heart rate was still a little high.  After hanging out at the pulmonologist's office for a few hours, we headed home.  Through the night and the next day, Jack was okay - sats okay, but not himself.  I was ready to throw in the towel and say forget it.  Then, the light went on when I noticed that Jack's breath rate on the vent didn't go above the set rate - which meant the vent was not sensing his own breath and was giving him no support whenever he took his own breath.  Jack's respiratory muscles are so weak that his own breath is very shallow.  The vent should sense when he takes a breath on his own and kick in and give support with the breath (in other words - it should compensate for Jack's shallow breath and blow in enough air to make it a productive breath.)  Imagine taking a breath and not getting any results.  No wonder Jack was stressed out.  I conveyed my observations to the RT at Apria (who has been absolutely WONDERFUL) and someone came out and adjusted the "trigger" mode on the vent and it was instantaneously better.  Jack had a good weekend and seems to be adjusted to the vent now.  His heart rate is still a little bit elevated, but it's hard to say whether it's related to the new vent.  At this point, it's a guessing game which is made more difficult by the fact that the main character can't articulate how he is feeling.

I have to say, I'm disappointed in Jack's pulmonologist. He has not made one phone call since we left his office on Wednesday asking how Jack is doing.  That bothers me - a lot.  This is life support we are talking about, I'd think you'd want to know how your patient is doing.  The doctors in this city never fail to disappoint me.  *sigh*.  That said, as much as I complain about Apria, they have been fabulous with the transition - especially the RT.  I've texted her on her personal cell phone, emailed her and called her relentlessly this last week and she's been more than patient with me.  She truly cares.

Added to the stress of switching Jack to a new vent is knowing that we will be leaving him at Ryan House for six whole days while we head to California for Spring Break.  The timing for making the vent switch wasn't well planned on my part.  I am scared about leaving Jack for that long, but everyone keeps telling me I have to try it - that I won't know if I don't try it.  But, it's so very hard.  Two of Jack's nurses and several of my friends have all agreed to check up on Jack while we are gone, so that makes me feel a little better.

In other news, my "baby" turns 10 years old next week.  Hard to believe that it's been almost ten years since we made the move from St. Louis back home to Arizona.  Eric really wanted a birthday party with his school friends this year.  We agreed, but unlike my super creative friend Susan, I'm not hosting the party at my house.  Nope, I go all out and pay lots of money to some germ infested place where the kids can jump and bounce for an hour and then eat greasy pizza and sugar laden cake.  Lame, I know.  But, Eric did choose the place and he is thrilled, so it's all good.  I even convinced Eric that it would be a good idea to forgo gifts from his friends and, instead, ask everyone to make a donation to Ryan House. Surprisingly, he was perfectly okay with it.  Now, I just have to psych myself up to socialize with parents that I feel so disconnected from.  The party is Sunday.  Wish me luck!

That's the latest and greatest from here. Have a fabulous week my friends.

Jack at IKEA - looking happy (and red-faced)!

All Things New

The new vent trial didn't go so well.  The issue was our DME company didn't show up with all the right pieces and parts for the new vent.  Jack did fine initially, but his heart-rate went into the 160s and pretty much stayed there while on the new vent.  There was clearly something wrong with the set-up, so the decision was made to put him back on his regular vent and try again next week when we have the correct set-up.  You know, because I have nothing else better to do with my time but spend another day at the doctor's office.  Grrrr!  (Time is a precious commodity and I really, really hate wasting it!)   The pulmonologist also changed Jack's mode of ventilation, which, in retrospect, was not a good idea because we should only change one variable at a time so if there is a problem, we only have one source to look to.  We don't know how much of Jack's stress yesterday was attributable to the vent and how much was attributable to the change in mode of ventilation.

And, I just have to share something that really gets under my skin.  After we got home, I called Jack's pulmonologist to talk to him about how Jack was doing and he says to me "you might want to check his trach to make sure he doesn't have a plug".  Really? REALLY?  I've only been doing this for thirteen years, I think I know when my child's trach is plugged and when it's not.  Sheesh!  (I really do like our pulmonologist, but this comment didn't earn him any points, that's for sure.)

In any event, next week is "Take 2" and I'm optimistic that it will be much better the next time around.

Here is a picture taken less than an hour into the vent change -- Jack was still happy at this point.  My hand is on the new Trilogy vent.

After a long and stressful day at the doctor's office, we came home to this:

Our new puppy - Hamilton

I don't think I mentioned that we had to return the dog we adopted around Christmas to the shelter because of all his health issues.  The kids have been searching for a new dog ever since.  We've never had a puppy and I never wanted a puppy - for obvious reasons.  My hands are already full, I cannot handle all the work (and mess) that goes with training a puppy.   I was overruled.  Mark and the kids saw "Hamilton" at a Petsmart adoption event last weekend and they just had to have him.  I will admit, he is really cute and looks so much like our dog Rylie.

I'm not sure why it is that change is so exhausting to me anymore.  I think I'm just flat.out.tired after thirteen years of chronic stress.  I knew going in that switching Jack's means of life support wasn't like getting a new wheelchair - this is serious stuff.  Sometimes you forget just how serious until you start messing with something that isn't broken.  From what I'm hearing from parents whose kids have switched to the Trilogy - they love it, so I know getting the new vent is the right decision.

As for the new puppy  - well, sometimes you just have to go with the flow.  I didn't really want another dog, let alone a puppy. But, everyone else in this house is happy, so be it.

I hope this post makes sense.  I'm exhausted and falling asleep as I type.  Thanks for checking in my friends.

After all these years ...

After all these years, I still find it very difficult to let people in, to open up to "in real life" strangers and let them know that my life is just a little bit different from most.  I have no problem sharing the details of this life or my innermost thoughts and feelings when I'm on this side of the computer and I don't have to actually face the people I'm sharing with.  I find it extremely uncomfortable to share the fact that I have a disabled child with people I encounter in person, let alone share the details of this life. 

However, there are times where I have to step out of hiding and let people know that I need help and explain why.  Recent case in point:  I received an email last week from the parent assistant for Eric's class asking if any kids would be interested in joining a writing club that will meet before school one day a week.  Eric would love this as he is such a creative thinker and writer.  Problem is, Mark is at work early in the morning and I can't leave the house until 8am when Jack's nurse shows up.  To participate in the writer's club, Eric would have to leave the house around 7:45am.  I can't get him there.  So, I had to suck it up and share just enough about my life to let this mom know that yes, Eric was interested, but I couldn't get him there and ask her if there is anyone who would be able to pick him up in the morning and take him to school.  It's times like this, when I can't even get my kid to school a half hour early that I really resent the restrictions this life places on our family.

Of course, the mom was very understanding and sent out an email asking if anyone could help give Eric a ride in the morning.  Within a few hours, two people volunteered.  I, of all people, should know that people like to help.  Heck, I like to help - that is why I founded The Willow Tree Foundation.  It's just much easier for me to give than receive.  

The mom also told me that Eric has talked about Jack with her and some of the kids in his class.  She told me he seemed sad when he was talking about Jack.  Break.my.heart.  I guess it's a good thing I have Eric in Sibshop.

Eric also shared with me this weekend that his teacher "forced" him to talk about Jack.  Eric is like his mother, he doesn't like to be the center of attention.  I asked Eric what he shared and he said he told his teacher that Jack has muscular dystrophy, a trach, a machine that breathes for him and that he can't talk or eat.  Guess that pretty much sums it up! I asked Eric if the conversation was just between him and his teacher and he said, no - that he was asked about his brother in front of the entire class.  I don't know what the circumstances were or why the topic came up, but I give Eric a lot of credit for talking about Jack in front of his entire class. 

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

I spent most of the weekend drafting a "Management of a Ventilator Dependent Child" parent perspective essay for a Cure CMD International Webinar.  Not an easy thing to do. It's difficult to take thirteen years of experience and decide what is important to share and putting so many thoughts into an organized writing.  But, I finished around 2am this morning.  

Next thing I have to work on is my introduction speech for CHOC Grand Rounds next month when we roll out the TouchStones program.  Scary and exciting at the same time.  I'm anything but a public speaker, but, then again, I never thought I'd ever find myself suctioning a trach and adjusting vent settings either.  :)

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

Jack gets the new vent on Wednesday.  I'll be sure and let you know how it goes.  

Thanks for checking in.

New Vent - No Hospital Admit

First thing Monday morning, I sent an email to Jack's pulmonologist that said:

Dr. P:
I don't know if you've had a chance to talk with Apria yet regarding switching Jack over to the Trilogy, but can you remind them that the Trilogy will be the fourth vent Jack  has been on since he was 7 months old and we've never had a hospital admission when he's changed vents.  I think we are all capable of figuring it out in your office.  


I received a phone call on Thursday from Jack's pulmonologist letting me know that we will be switching Jack over to the new vent in his office.   


Score! :)

I shared this information in an email with my favorite (former) doc of Jack's. His response:

I wish I could clone you. We have so many patients here who could be transitioned and managed with chronic ventilatory needs without a PICU admission. I love that you are such a creative advocate for Jack.

It's nice to know that I've still got it in me - the whole advocating thing.  Sometimes I wonder.  I'm not sure if it's that I don't have the same need to advocate for Jack like I had in the beginning or whether it's just that I don't have the energy.  But, I'll admit, it feels good to know that when I do advocate for Jack, it's appropriate and successful.

Puts a smile on my face going into a busy weekend.

Eric has swimming and Sibshop tomorrow and Mark and I are actually going to a grown-up only dinner at a friend's house.  It's unusual for us to even get an invite, let alone find nursing coverage on a Saturday evening.

Score again!

Have a great weekend my friends!

Just Living Life

Just a quick update because I want to be better at keeping the blog updated, but also want to stick to my commitment to try and get to bed by 10pm.  I'm really trying to get more sleep because the last 13 years have really caught up with me.

As I keep up with friends on Facebook and my IRL friends, I realize how fortunate we have been.  So many people I know are bouncing in and out of the hospital with their kids for one issue or another.  There's nothing more stressful than a sick or hurting child.  For us, it's been a very long time since Jack was in the hospital and at least a couple of years since he's been sick.  I know how remarkable that is and it's not something I take for granted.  I'm not sure why we've been so "lucky" as to avoid sickness and the hospital, but I do know that being able to "just live life" is a blessing to be appreciated.

As part of our just living life ...

Eric has made great strides in his swimming.  He went from a kid who had to be strong-armed into the pool to a kid who is now mastering all four strokes and well on his way to the advanced stroke/swim team in a matter of seven months.  Eric has the perfect swimmer's body - lean and long.  He looks really good in the water.

Saturday morning after swim class 

Multi-tasking tube feeding and suctioning at the same time (picture courtesy of Eric)

I've even had the time to fit in a home improvement project.  I try to accomplish one project a year.  This year, I painted the upstairs hallway wall and created a picture wall.

As for the girls ...

Hilary has established a good client base by doing some freelance work. She has networked with people who know her genre of art and she's had a lot of requests for her drawings.  She's doing quite well profit-wise, especially given that she doesn't have any overhead and she has a free place to live. :)

Mary is busy with school and wishing she could come home more often then she's been able to.  She doesn't have a car at school and we can't be making the drive up north every weekend to bring her home.  I think she's enjoying college for the most part (but, realizing that home isn't such a bad place to be!)

The new ventilator that Jack will be switching over to is in and the next step is making the switch. Jack's pulmonologist wants to do it in his office, Apria (our medical equipment company) wants the change to be made in a hospital.  I don't understand why a hospital setting is necessary, especially given our experience with vents.  Jack is on his third different vent since 1999 and he never needed a hospital stay when we switched to a new vent in the past.  I've decided that I'm not going to get too stressed out about it - if we have to go inpatient we will.  I'm learning to go with the flow a little more because the stress of fighting the system is just not worth it.

I've also been asked to write another "perspective" for the Cure CMD website.  They want me to share my perspective in caring for a child with respiratory issues. What it's like to care for a child with a trach and vent. I think I should break it down into two parts - the technical part (the equipment and care involved) and the emotional part (in caring for a medically fragile child).  I appreciate the opportunity to share my experiences (after all, what good is experience if you can't share it?) and I enjoy writing.  I only wish I had more time to focus on my writing.

I also have a copy of the video that we put together at CHOC.  It's really humbling to listen to other moms read my words from my "Dear Future Physician" letter and know that they too can relate to the message conveyed by those words.  I will share the video as soon as I find out if it's okay to share before it's shown at CHOC.  (which is scheduled sometime this month.)

That's all I've got for now.  It's past 10pm and I have to be up bright and early to start week three of "Couch to 5K".  If I'm successful, by the end of week 8, I'll be able to run a 5K - with the hope that I can  progress from there in preparation for the Disneyland half marathon in September. I'm also contemplating participating in the St. Louis half in April - a Cure CMD team was recently put together for that race.  Not sure yet on the St. Louis race - a lot will depend on airfares. They are ridiculously high right now.

Okay, I'm really done now!  Love ya!

Hope

HOPE

As defined by Dictionary.com:

Hope: the feeling that what is wanted can be had or that events will turn out for the best.

As written by Barbara Gill in “Changed by a Child”:

Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job.

To quote my friend Christy:

 “Hope is a funny thing”. 

________________________

As parents, we all have hopes and dreams for our children.  As the parent of a medically complex and disabled child, hope is a powerful thing. It is what drives us, carries us and comforts us in the darkest of times. 

In the beginning of Jack’s journey, there was so much hope. Despite being a 33- weeker, Jack’s course was uncomplicated and he came home six weeks after he was born - eating and breathing on his own and requiring only a small amount of supplemental oxygen.  My hope was simply for Jack to wean off the oxygen. Shortly after he came home, Jack suffered an apneic event (he stopped breathing) and ended up in the PICU.  It was discovered that Jack was born with a cardiac anomaly – a vascular ring that was compressing his airway and esophagus.  Jack had surgery to divide the vascular ring without complication and when he was discharged from the PICU following surgery, I don’t think anyone expected to ever see us again. I hoped the worst was behind us. Two days after discharge, Jack was readmitted to the PICU in respiratory distress. Jack was ultimately intubated and over the course of three months, multiple attempts were made to extubate him.  Each attempt at extubation, I hoped with all my heart that he would make it off the vent so that we could just go home. To no avail.  Five months after his first PICU admission, Jack was discharged sporting a trach, ventilator, g-tube and no diagnosis, but with the hope (and expectation) of everyone involved that all the medical intervention was temporary.  When I signed off consenting to the trach, I honestly never contemplated that it would be permanent.  In the first months of his life, Jack did not present as a child with a progressive neuromuscular disease.  In fact, engraved in my memory is a comment made by a neurology fellow during rounds one morning.  He looked at Jack and said, “Here is a neurologically healthy child.”

From the moment of Jack’s discharge, my mission – and hope – was to get rid of it all.  Occupational, physical and speech therapists invaded our house daily to work with Jack to get him to sit independently, eat by mouth and communicate.  I pushed Jack relentlessly and mercilessly.  Months passed and the first year quickly faded into the second year. Jack made little progress on all fronts.  I was forced to temper my hopes.  I went from hoping Jack would get rid of it all to just hoping he would get rid of the ventilator.  Couldn’t he at least just get off the damn vent? I literally begged Jack to breathe on his own.

When Jack was three years old, one of his doctors gently suggested that I “needed to make peace with the ventilator.” It was clear to everyone by then that Jack had more going on than initially thought. We still didn’t have a diagnosis, primarily because I refused to follow-up with Jack’s neurologist after Jack’s discharge from the hospital.  Whatever she had to say, I wasn’t prepared to hear it at that time. Letting go of the hope that Jack would be able to live without the ventilator was by far one of the most difficult things I’ve ever had to do.  It was the ultimate defeat for me because it was what I had so fervently hoped for, for so many years.  Losing the g-tube and wheelchair were secondary hopes that could be tackled after we got past the ventilator.  When Jack couldn’t get past the ventilator, what was left to hope for?

On Jack’s 5th birthday, I penned out my “new” hopes for Jack in the first of what has since become an annual birthday letter:

“I hope that every morning when he wakes up and every night before he closes his eyes, he feels safe and knows that he is loved. I hope that his days on this earth are lived without pain. I hope he achieves a way to communicate his feelings and desires to others. I hope he stays healthy. I hope he accomplishes all that he is capable of.”

Despite my apparent acceptance of Jack’s limitations and my new hopes for Jack, they were short lived. I wanted more. When Jack started school, I had every hope that he would thrive and be able to show everyone how smart he was.  I hoped that his teachers and therapists would find a way for him to express what was going on in his head.  Jack got a power wheelchair and I hoped that he would be able to maneuver it on his own and have some control over his life.  Jack was beginning to make progress with his schooling, his communication and his wheelchair until one fateful day in 2004 when he disconnected himself from his ventilator and suffered an anoxic event – an event that stole so much from him. It was devastating and I was, once again, forced to temper my hopes for Jack. 

My hopes were renewed when Jack got his state of the art eye gaze computer system. I hoped with everything I had (almost as much as I had hoped he would ditch the vent) that he would finally be able to communicate with us. I imagined him using his eyes to write us a letter, sharing all the thoughts that had been held captive in his head all these years.  I really, really hoped we’d found the key to “unlocking” Jack. Despite all my hopes, Jack is unable to effectively communicate using his eye gaze system. 

I have since learned through my involvement with Cure CMD that Jack’s subtype of muscular dystrophy can cause cognitive impairment that affects the ability to communicate.  The reality is, Jack will never be able to communicate in the way I had hoped because of his disease.  Jack will never talk, walk, eat or breathe on his own.  Not one single hope that I had in the beginning of this journey will ever come to be. 

Imagine what it’s like when your child is living the worse case scenario for someone with his disease.  Much of Cure CMD’s mission is to find ways to slow down the progression of the disease. The hope is to help individuals NOT end up like Jack.  How’s that for a hope buster?

It’s difficult to know what to hope for anymore. I certainly no longer hope that what I want can be had.  Some might tell me to go back to the hopes that I had on Jack’s 5^th birthday – that those hopes are good enough. Some days, those hopes are good enough.  Other days, it feels like giving up.

I continue to allow teachers and therapists to come into my home. I continue to sit Jack in front of his eye gaze system.  Because, the fact is, hope is a funny thing. Hope is what allows you to take a chance on the future.  Hope is what gives you the strength to get up each day and “keep on keeping on”. 

For those reasons, I continue to Hope.

Sabbatical

Okay, I'm back.  I decided to take a blogging sabbatical - I guess I should have told you ahead of time.  Actually, it wasn't a planned sabbatical in that I felt like I needed a break from blogging, I just didn't have anything interesting to share.  However, it appears that my blogging absence has some of my readers worried.  I received several phone calls asking if everything is okay and a text from Mary telling me "Mother you need to update your blog!"  I just figured Facebook was keeping everyone updated.  Now I know that there are a few regular readers out there who aren't on FB (and who don't leave comments - so I don't know you read!)

In any event, I feel the love and it's much appreciated.

Since my last update, the only significant item of interest is Team Cure CMD's participation in the Phoenix half marathon.  My beautiful friend Jenny and her adorable daughter Gigi flew in from St. Louis for the race and stayed a few extra days to visit with us.  I forgot what it was like to have a baby in the house, but was quickly reminded that babies control the show.  Gigi was great - her only issue was not being able to sleep well in a strange environment.  I don't think Jenny got much sleep while she was here.  Despite the lack of sleep - Jenny still managed to complete her very first half marathon in under 3 hours.  She is awesome!  I won't share my time because, well ... it's not noteworthy.  The Phoenix course seemed tougher than the Los Angeles course and I was definitely feeling it more this time.  But, (for Christy) - my foot didn't hurt during or after the walk this time.  

The founder of Cure CMD - Dr. Anne Rutkowski also came over from California with her husband, Joe and daughter, Maia (who has the same form of CMD as Jack).  Anne is one of the smartest people I know and has seemingly endless energy.  My sister described Anne as "captivating".  She is so passionate about Cure CMD and its mission that she "sucks you in" and you can't help but want to be part of the "team" and support her in any way you can.  I can't say enough how remarkable a person Anne is and what a privilege it is to be able to spend time with her.

Below is a picture of Anne working with Jack on his eye-gaze system.  She sat right down with Jack and knew how to work the thing without any hesitation.  I feel like a total loser because I never spend any time with him on it.  Anne suggests we spend at least a half hour a day with Jack using his device.  She's right of course, but my brain doesn't feel like learning new things and I don't find navigating a communication board to be an easy task.

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Race day

Team Cure CMD

Anne and Jenny

Clearly, we were more interested in photo opps than our finish time!

(my sister, Maureen)

I have now participated in 3 - count them - THREE half marathons for Cure CMD.  Definitely not something I thought I would ever do.  I've already signed up for number 4 - the Disney Half Marathon over Labor Day weekend.  This one should be fun -- running through Disneyland.  The time limit for the Disney half is shorter than the other halfs, so running will be involved in this next one.  Let the training begin! (I'm actually quite scared that I can't do it -- the running thing.)

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Our original plans were to drive to Sedona the Monday after the race. But, given our sore bodies and a baby who was very vocal about her dislike of the car seat, we decided to forgo the two hour drive to Sedona and visit the Desert Botanical Gardens instead.  Sedona would have been nicer (and cheaper), but what kid doesn't want her picture taken next to a giant cactus, right?

Is she cute or what?!

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Gigi and Jack enjoying some TV time

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That's the update my friends!  I've got another blog thought floating around in my head that was sparked by my time with Anne and by something my friend Christy mentioned in her recent post.  It's about "Hope".   It won't be a feel good post, but it will be honest.  

Stay tuned.

Another SLCH Article - "From the Bedside"

St. Louis Children's Hospital started a new feature on their website called "From the Bedside" - personal stories about patient care at SLCH.  One of Jack's former home health nurses, who is now the manager of Same Day Surgery and the PACU at SLCH wrote a piece for the website.  Jean is a pretty remarkable person herself with her own inspiring story, so it's pretty special that they chose her and that she chose to write about her relationship with Jack and our family.  I wasn't told that this article had been published, I just happened upon it when I was looking around the SLCH website.

What I Learned From Jack

December Recap

Wow, where did the month of December go?  For that matter, where the heck did the year go?! We've been busy this month with lots of opportunities for Jack to get out and about.

Earlier this month we attended the Ryan House Holiday Party where they had "snow" (a machine blew out soap bubbles.)

Jack has the reputation at Ryan House of being a Beatles fan (Mark is a big Beatles fan, so he put a lot of Beatles songs on Jack's iPod).  The harpist remembered Jack and played a few Beatles' songs for him at the party.

Jack's gifts from Ryan House

Last week I flew to Southern California for the day to participate in a video that is being produced by Children's Hospital of Orange County (CHOC) to promote the TouchStones of Compassionate Care program. My dear friend Sarah (Keturah's mom from the Trach board) is on the family advisory committee at CHOC and she really pushed to get the hospital on board. For the video, they chose several sections from my "Dear Future Physician" letter and several moms each read a section for the video.  A CHOC physician was also featured in the video, as was Keturah.  The plan is to roll out the whole program (video and TouchStones) in February.  I've been invited to attend the roll out in February and I'm so honored to get to be there to see it happen.

The group of CHOC moms and Keturah who participated in the video (and me, of course) 

A few days before Christmas we had our annual family cookie decorating party.  We've been doing this for a few years now and it's become quite competitive.  This year there was a lot of pre-decorating planning involved and one sister showed up with her own special decorating tools! It was a lot of fun and many thanks to all of you on Facebook who voted.  :)

The winning cookie 

(apparently a Pinterest idea)

A close second

A few days before Christmas, a woman I work with told me about a rescue dog her husband was dropping off at the animal shelter.  She had her husband (who works for animal control) bring the dog by the office first so I could see him. The dog was calm, sweet and had really sad eyes that said "take me home". So what could I do? Ugh! I called Mark, he took the kids down to the shelter to meet the dog and they decided he was a "yes".  We are now the proud owners of __________.  We don't have a name yet that we can all agree on.  It's changed three times already.  I'll let you know once we decide.  So far, he's working out well. He's quiet and calm.  A perfect fit for our family. (I can't do dogs that bark a lot, jump a lot or that need to be housebroken.)  Unfortunately, we've already forked over a chunk of change since we got _______ because he's got complications from being neutered (performed at the shelter before we could take him home).  Vet bills less than a week into dog ownership is not what I planned, but, then, what ever goes according to plan, eh?

Mary and our dog ___________

Poor Mary has been working her tail off since she got home from college.  She's working at Target at the guest service counter. You can imagine how nice people have been to her the days before and after Christmas (not!)  They scheduled her with full-time hours, so she's not getting in much relaxation during her Christmas "break".   For the most part, she's not complaining as she needs money for lift tickets and snowboard rental when she returns to school in a few weeks. 

Next week, I'm taking Jack to see his pulmonologist to talk about putting him on a new ventilator.  This vent - the Trilogy - is supposed to be more sensitive, making it more responsive to the patient's own breathing.  I talked with the RT at our DME company and she said they are using it quite a bit with patients here in Phoenix, so I thought we'd better check it out.  It's a smaller vent, doesn't have external peep like the LTV and has longer internal battery life. The only downside is that Jack has to go inpatient to trial the vent.  I'm not excited about a PICU stay, but I suppose I can tolerate it for one night, especially if Jack is not there because he is sick or has had surgery.  I've definitely come a long way from someone who absolutely hated the vent to someone who is now shopping around for a new one!

That's the recap.  For those of you on Facebook - this is mostly old news.  To my blog followers -thanks for checking in and thanks for caring.   I wish all of you a . . . 

VERY HAPPY NEW YEAR! 

Here's to 2012 - may it be a good year for all of us. 

Merry Christmas

Merry Christmas to all my wonderful friends and blog followers. I promise an update soon.

"Knowing Jack"

Jack's story finally made it onto the St. Louis Children's website. I contributed to the writing of the story and I'm very happy with the final version.  It highlights what is special about Jack and what is special about St. Louis Children's Hospital.  What a great gift for me this Christmas season to see Jack featured in a positive way and by a place that has played such a large part in our lives. 

Here is the link to the story:

KNOWING JACK

No Words Necessary

"Opportunities" Revisited

Just wanted to share that my Blog Thought "Opportunities" was published on the Cure CMD website.  They retitled it "A Mother's Touch".  Find in HERE.  Kind of cool!

Family Photoshoots

This weekend I took pictures of my sisters' families for their Christmas cards.  I promised I wouldn't post the pictures all over Facebook or the blog, but I just had to share a few :)

my sister Joan and family

my sister Maureen and family

My dad informed us a couple of weeks ago that he wouldn't be spending Thanksgiving with us because he was spending it in Missouri with his good friends. Today, my sister received this picture via email.  Looks like my dad is having a pretty good time, wouldn't you say? :)

Have a great week my friends!

Respite Weekend

Last summer we scheduled Jack for Ryan House weekends through the end of the year.  This weekend was one of his Ryan House weekends, so we took advantage of the opportunity and headed up to Sedona.  Sedona is one of the most beautiful places there is and I realized this weekend that I really need to be better at taking advantage of having such a beautiful and peaceful place practically in my own backyard.  I always worry when Jack is at Ryan House and we are far away, but when we picked him up this afternoon he look good and he was happy.  I usually call a couple of times to check in on him, but also realize that they aren't ever going to tell me anything other than "he is doing good" when I call, so it's not really anymore reassuring to call and check on him than to not.  If there really is a problem, they have my phone number and they will call, right?!

Ryan House has become so popular that they are now limiting the number of weekends each family can have per year to three.  Three.  That's a bummer because who needs respite during the week?  Oh well, three weekends a year are better then none.

I dragged Hilary out of the house and made her go with us.  She hung out at the hotel on Saturday and Mark, Eric and I went hiking.  We also drove into Flagstaff after our hike and met Mary for lunch.  Today, Mark and Hilary went to "Out of Africa" wild animal park and Eric and I walked around Sedona and enjoyed eating, shopping and people watching.  It was a great weekend all the way around.  

Below are a few pictures from our hike on Saturday through beautiful Oak Creek Canyon.  The trail we took is about 3.5 miles into the canyon for a total of about 7 miles roundtrip.  We turned around at about the 2.5 mile mark.  There are a lot of places along the trail where you have to cross the creek.  Our walking sticks came in handy helping us keep our balance when we walked on the rocks across the creek. 

It's my hope to one day gather up a group of my fellow trach moms and somehow get them all to Arizona for a weekend retreat in Sedona. Wouldn't that be awesome?  Who's in?