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?

TouchStones Update

Thank you all for the birthday wishes for Jack and for watching his video.  It's still so hard to believe that Jack is 13 years old!  I can clearly remember Jack's first birthday - he was so sick. He was miserable, I was in tears and there was little energy for any celebration. We have come so far in thirteen years. While life is nothing like I expected or wanted (and still don't want), I think we've done a fairly good job of learning to "dance in the rain".   I'm so thankful for all the friends I've met along the way who are dancing right along with us.

____________________

On a different note, there are some exciting things going on with the TouchStones program.  I don't think that I've yet shared that we now have Children's Hospital of Orange County on board thanks to the persistence of my dear friend Sarah (Keturah's mom for those on the trach board).  CHOC is going to roll out the program hospital wide for all of its physicians.  They are putting together their own video using my "Dear Future Physician" letter as the foundation for what they want to say.  I've been invited to be a part of the video as well.  Exciting stuff!

I also recently exchanged emails with one of Jack's former PICU docs who was the physician who supported the Touchstones program from the beginning.  She was the one who gave me the confidence to move forward with the idea.  She was at Johns Hopkins at the time, but she is now on staff at Vanderbilt Medical School and Children's Hospital.  She shared with me that she has introduced the TouchStones program into a "Healer's Art" class she teaches at the medical school and she hands out the pocket stones on the last day of class.

It warms my heart to know that the program is being used at some of the top childrens' hospitals in the country.  Thank you St. Louis Children's Hospital for hooking me up with amazing doctors and thank you Tracheostomy.com for hooking me up with amazing parents.

Although I would love to have more hospitals on board, I recognize that we are making a difference one hospital at a time.  If we can change the way one physician treats his or her patients and families (and I believe we have), then we have succeeded.  I am a firm believer in making a difference one "starfish" at a time.  I shared the "Starfish Story" a couple of years ago, and I share it again to remind you that we can ALL make a difference one person at a time.

__________________________

THE STARFISH STORY

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

Happy 13th Birthday Jack!

Jack is 13 years old today. A teenager! Thirteen years ago I could never have imagined the journey that Jack and I would travel.  Even today, I stand back and still can’t quite wrap my head around where we started and where we are today. Who would have thought?  In the beginning, not many of us, that’s for sure.

Jack is loved, Jack is happy and Jack doesn’t know any different.  Today, we celebrate all of those things.


Rather than share a bunch of superfluous words, I share a song that perfectly expresses how I feel thirteen years into this journey.  


Happy Birthday Jack – we love you to the moon and back!

Sneak Peek

In the video I am putting together for Jack's birthday, you will see a lot of pictures from a professional photoshoot that I had done in September.  The person who took Mary's senior portraits (Doni) wasn't available because she is taking time off for her new baby.  The person she suggested did a great job - although, I will  say I don't think she's as good as Doni.  Here are some pictures from the shoot - a preview of what you'll see in the video.

LA Half

Despite my lack of training, I finished the Los Angeles 1/2 marathon and I wasn't the last one across the finish line. Yay!  It was a lot of fun, especially because it was Halloween weekend and there were a lot of crazy costumes amongst the runners.  There was a group of Elvis runners pushing jogging strollers holding ice chests full of beer.  They were drinking while they were running.  I'm really not sure how they finished the race and they even finished in front of me! (should I admit that?)

Pre-race pictures

Downtown LA

Part of our Cure CMD team

I don't have any post-race pictures and if I did, I doubt I'd share them. :)  I did something to my foot this race - when I took my shoe off after the race it was swollen, red and painful on the top (and still is today).  Based on my Google diagnosis, I think I might have a stress fracture.  I'm not sure whether I need to have it seen by an orthopedic doc or not.  I guess I'll wait a few days and see if it improves.  Whatever the issue is, it better resolve by January because I have another half marathon to walk!

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

Eric went trick-or-treating with one of his friends from school.  You can guess who is who.  

Jack's birthday is Friday.  So many thoughts and ideas in my head ... transforming them into something I can share with you will be the challenge.  As all my special needs moms know, birthdays are so, so bittersweet.  Stay tuned.

Home

We are home and settled back into the routine of every day life.  Most importantly, we are home where we have help with Jack.  I don't want to harp too much on how truly exhausting it is to travel 3000 miles with a ventilator dependent, essentially quadriplegic, almost thirteen year old, eighty pound child because the fact is - I choose to travel to St. Louis - I'm not required to travel there.  But, I don't think it's possible for most people to really understand the amount of physical work involved in traveling half way across country with Jack.  Jack does not travel in his wheelchair, he sits in one of the captain's seats in the van.  Therefore, when we stop for the night at a hotel, Mark has to lift Jack out of the seat and carry him out of the van, the whole time Jack is disconnected from his vent and I'm right there assisting with the transfer and hooking Jack up to his other vent once he is in his wheelchair.  This lifting of Jack alone is back-breaking.  Add to that the unloading and loading of his equipment and supplies - which requires two trips with a fully loaded hotel dolly.  I counted that on this trip - because we did it over three days each way and we also had a minor delay due to car trouble which required an additional, temporary hotel stop - we loaded and unloaded Jack and all his stuff 14 times!   I need to get a video of the loading and unloading process just to give you an idea of all that is involved. Mark says we look like a traveling circus.

I'll also not complain too much about having to provide all of Jack's care 24/7 for 10 days straight with no help because I know some of you who read my blog don't have nursing help and you provide all your child's care all the time.  However, I can tell you - I could never be Jack's full-time caregiver.  I'd be dead by now. Seriously.

My whole point being that even though I took a trip to St. Louis and I was away from the office for six days, I was NOT on a VACATION people!  (what I want to scream when people ask me how my "vacation" was.)

In any event, we made it home safe and sound, Jack is well and Mark and I are slowly recovering.  It takes us about a year to recover and erase from our memory the hell of this trip.  Just in time to do it all over again! :)

Okay, so we did have one "fun" day. The last day in St. Louis, the weather was beautiful, so Mark and I decided to take Jack to the St. Louis Zoo.  Jack didn't really enjoy it too much because it was windy and he was probably still recovering from the prior day's eye surgery.  Oh well, we made a valiant effort at trying to have some fun with Jack while in St. Louis.

Mark's awesome picture of us on the Merry-Go-Round. Granted, he was trying to get a picture of a moving target.

Lots going on over the next few weeks.  I'm walking the LA 1/2 in less than two weeks and I haven't trained one bit for the walk.  Not sure what I was thinking agreeing to do this knowing that I haven't trained like I did last year.  Then again, I'm only walking it - I'm not running it.  But, there is still a time limit, so I do have to walk with some speed.  Wish me luck!  

Jack's 13th birthday is fast approaching.  So much I want to share, but finding the time to put my thoughts to words (and maybe a video) - therein lies the challenge.  Hopefully, I'll come up with something that does justice to his reaching the milestone of being a teenager.  (can you believe that?!)

Thanks for checking in my friends.  Have a fabulous rest of the week! 

A Story of Compassion

Yesterday, I had a lunch date with Jack's neurologist. I'm fortunate that every year when we come out to St. Louis, she takes time out of her busy schedule to meet me for lunch.  She was seeing patients in the "Center for Advanced Medicine" ("CAM") building and Jack and I went there to meet up with her after she finished. Housed in the CAM building is the Siteman Cancer Center, a non-pediatric cancer center.  The CAM building is a large, modern, glass building with a huge lobby - it looks like a hotel lobby with a valet counter, information center, coffee bar and even a piano where a woman was playing music along with an older gentleman who was belting out "Danny Boy" as everyone milled about the lobby.  Jack and I had to wait awhile for Dr. C to finish seeing her patients and as I was sitting there, I did a lot of people watching.  I saw tired eyes and weary bodies of people being pushed in wheelchairs by husbands, wives, daughters, and sons because they were too weak to walk. There were people walking with canes, people carrying oxygen tanks and people who were obviously in the throws of cancer treatment.  My eye caught a man who was, I'd guess, to be in his mid to late 40s.  He was being pushed in a wheelchair by who I assume was his father.  It was obvious that he had some type of cancer of the jaw, neck or throat because of the incisions on his face.  He had a trach and sitting in his lap was a suction machine.  His eyes looked sad and distant.  However, as his father wheeled him past Jack - the man looked at Jack and then crossed his arms on his chest to show the sign for "love".  It was such a simple, yet profound gesture.  A gesture of compassion that required no words.  What an amazing way to end our week at SLCH - to experience the kindness of that man who felt a special connection to Jack and who showed love in the mist of his own suffering.  It was a very touching and memorable moment.

St. Louis

We arrived safe and sound in St. Louis on Monday.  It's been a fairly stress-free week being that we are only seeing one doctor this time around.  Jack had his eye surgery today and only one eye needed to have the laser procedure done to relieve the pressure.  The ophthalmologist did mention that it may be time for new lenses because he's grown and things have changed inside the eye.  We have a post-op appointment tomorrow and we'll talk about everything then.  I have a feeling these once a year trips to St. Louis (rather than every other year) are going to become the norm for us.  I can say with certainty that our next trip out here will be in a different vehicle.  It's just too much for Jack to sit in a seat for 8+ hours without the ability to change his position.  And, it's just too difficult for Mark to lift Jack in and out of the van anymore.  If only I were a rich man, then I'd buy me one of those houses on wheels and travel in luxury to St. Louis.  If only ....

Jack was very popular in Same Day Surgery today - lots of visitors stopped by to see Jack.  It's so nice that so many people remember Jack and stop by to visit with him and me.  I was also able to request - and get - my favorite anesthesiologist who is so good with Jack and who knows Jack very well.  I can't say enough how much I love St. Louis Children's Hospital.  Just walking around the Washington University Medical School/Children's Hospital campus is such a neat experience - the place just has the  feel of academia and excellent medical care!

Some pictures from our week so far ....

The view from the deck of our friends' house  

My handsome and happy Jack. 

Where I've eaten every day since we've been here 

(at least once a day, sometimes twice a day!)  

Definitely a place of "advanced medicine"

the place we come for

22 Years

Today Mark and I celebrate 22 years of marital bliss. Not bad considering that for 21 of those years we've been parents of children with special needs. Although, technically, we didn't find out Hilary was deaf until she was a year old. So, we always say, we had 2 "good" years of marriage.  The key to our lasting marriage - despite the overwhelming odds against it lasting - is HUMOR.  If nothing else, we both can still laugh.  And, anyone who knows Mark knows that he is darn funny.  He's quiet- but funny!  Little known fact - Mark was a theatre major in college.  He's a great actor with a great sense of humor. I've encouraged him to get back into acting by joining a community theater.  Unfortunately, his work schedule just doesn't allow it right now. But, maybe some day ....

The following pictures are really lousy for a couple of reasons.

1. They are old (22 years old, to be exact).
2.  We didn't have money to hire a professional photographer when we got married - so the quality is crappy to begin with.  But, I thought I'd share them anyway.

The priest in the left of the picture (who you can only partially see) married my mom and dad (and taught both my dad and me in high school). The other priest - he was also one of my high school teachers.  He was a friend of my dad's growing up and he said my mom's funeral.  He's awesome.  If all priests were like him, I might still be going to church.  (But, that's a whole other topic!) 

Time for me to shut down the computer and finish packing.  We're hitting the road tomorrow and 5am comes early.  

Aaaahhh . . .

So much to do and so little time.  T minus 2 days before we leave for St. Louis and I'm probably more ill prepared than I've ever been in the past. Part of me just doesn't want to go and the other part is really looking forward to seeing my St. Louis friends, savoring a pumpkin muffin from the St. Louis Bread Company (aka Panera), and breathing in some cool, crisp Fall weather.  But the laundry and packing that needs to be done in a short time frame has kicked the stress level up a notch.  If only that thing called a "job" didn't suck up all my time.  But, alas, whenever I feel overwhelmed with too many things to do, I just head over to my friend Christy's blog and she keeps me in check. (Christy is one crazy, busy lady and she still finds time to run marathons.  She's amazing!)

When given the choice of staying or going, Eric elected to not go with us to St. Louis.  It was a difficult call for him because he enjoys seeing Peggy, but in the end, he just couldn't face the three days in the car (each way).  We decided to make the trip over three days instead of the usual two days. It's just getting too much for Jack to tolerate 12+ hour days in the car.  We'll spend more days on the road (6) than in St. Louis (4), but we're hoping it will be a more enjoyable tolerable trip doing it at a slower pace.  We'll see.

Last Sunday, Hilary turned 21 years old.  Seriously, how is it possible that she is 21 years old?! She was just a baby, darnit!

If you recall, when I decided to re-enroll Jack in school, I took the position that I would keep my expectations low.  I have not been disappointed.  The first quarter of school is finished and Jack has received ZERO hours of the OT, speech and life skills/academics set out in his IEP - an IEP that was signed in early August.   At the end of the day, whether or not Jack goes to "school" will have no impact on his future and, for this reason, I try not to get too upset with the lack of compliance by the school district.  But, it's this lack of compliance that caused me walk away from the hassle of it all three years ago.  And, it also comes down to what is right and what is wrong and the actions of the school district are just wrong.  I could file a complaint with the Department of Education, they'd find the school district to be out of compliance with the IEP and mandate that the missed hours be made up.  However, I've been there, done that and you see how much of an impact it had on the school.  At this point, I'm just not sure if I'm ready to play hardball or say WTF.

Adding insult to the injury, I received this in the mail today:

Jack's very first report card.  First of all -- I still can't wrap my head around the fact that Jack is in 7th grade!  I've never met the "Counselor" and I have no idea what "P" means.  "Pass"?  I really didn't need to receive this report card. It contains absolutely no meaningful information and it's just a reality check that makes me sad. Pfft...

Anyway .... I'll do my best to update our travels to St. Louis. Thanks for checking in.