New ENT

We saw a new ENT today - one who trained under our St. Louis ENT.  Two words: Love him!

It was so refreshing to encounter a physician who completely understands why we travel to SLCH, who understands the deficiencies this City has when it comes to coordination of care for complex kids like Jack, who treated Jack like a human being, and who has a great personality to boot. When he came into the room he said "I finally get to meet you!"  (Apparently, our St. Louis ENT had already told him about Jack with the hopes that one day we'd make an appointment to see him.)  I was almost giddy when I left the office - just knowing that I finally have a local ENT who can take care of acute issues for Jack and not feel like I'm settling when Jack receives care here versus St. Louis.  He did a flexible scope in the office and didn't see any granulation tissue and, in fact, he said Jack's airway looks great. Jack hasn't had any more episodes since the last one, so who knows what the issue was.  I think Jack just likes to keep us on our toes.

A relevant fact for the day:

The Phoenix metropolitan area has a population of over 4 million people, yet has only three pediatric ENTs in the entire valley.  There are a lot of ENTs who see both kids and adults, but there are only three who care solely for kids. (One who trained under Jack's St. Louis ENT, one who trained under the airway guru, Dr. Robin Cotton and one who saw the need and was the first pediatric ENT to set up shop here).  That, my friends, is a problem.

In any event, today goes down as a good day!

Happy Birthday to My Nieces

Because I know they check the blog every once in awhile, I wanted to wish my nieces, Bridget and Kelsey (who are sisters) happy birthdays!  Bridget's birthday is today and Kelsey's is tomorrow.  

Below are two of my favorite pictures of my nieces.  Their personalities shine through in these pictures ... or at least one of their personalities does.  Can you guess who? :)

(Bridget, Kelsey, Shannon)

(enough already with the pictures)

(hey, whatcha doing with my pacifier?)

These pictures were taken close to twenty years ago!  I don't even know how that is possible.  Today, Bridget is in her first year of law school at Rutgers School of Law and Kelsey is finishing up her degree at NAU.  These pictures were taken (by me) before I had kids.  This was a time when having kids meant diapers, pacifiers, bottles, formula, Gymboree and well checks ... not cochlear implants, IEPs, DMEs, g-tubes, vents, trachs and PICUs.  I sure miss the naivete of those days. 

Happy Birthday girls - I hope your birthdays are (were) extra-special! 

Independence Day

Today was a day of independence ....

Hilary doesn't drive, so she has to take the City bus to get to school.  She had to leave the house at 5:30am to get to school in time for her 8am class.  The ridiculous part is that the school is 20 minutes away if she were to drive there (incentive for learning to drive??) But, she managed to get up, get out the door, walk to the bus stop, make two transfers, arrive at the school, attend her three classes and do it all over again to get back home.  She walked in the door at about 3:45pm. A long, hot day for her, but she got where she needed to be, on time and all by herself.

Mary is all moved into her dorm at NAU and is ready to embark on her new journey as a college student, all by herself.

Eric had to walk home from the bus stop after school today because Mark and I were with Mary.  I was a nervous nellie about him walking home without an adult, but it's less than a quarter mile from the bus drop off to our house and he doesn't have to cross any streets.  I told him to make sure he came straight home - no dawdling.   This was Eric's first time walking home from school all by himself, and he arrived safe and sound!

Our kids are growing up and becoming independent. It's a good thing, but bittersweet at the same time.  Oh well, we don't ever have to worry about not being needed - we've always got Jack! :)

Mary walking Eric to the bus stop before she leaves for college

(I think she's going to miss him)

Getting her dorm room set up

Hanging out with the Lumberjack 

(school mascot)

All Is Well

I received the summary of my "Executive Physical" in the mail today (as a follow-up to the phone call I got from my doctor two weeks ago).  Apparently, my diet of chocolate and beer is working for me.  According to the report, my cholesterol is very good, my triglycerides are excellent and, based on some special CT scan they did, my arterial age is 39. Not bad, eh?  I did find out why I'm so tired all the time - I'm anemic.  I started taking an Iron supplement and I already feel like I have a bit more energy.  I'm not ready to run a 1/2 marathon yet, but maybe some day.  By all accounts, I should live to see another day.  Yay!

I got Jack an appointment with a new ENT for next week.  The guy is new to the group (and the fourth doctor I will have seen in the group since we moved here) and he trained under Jack's St. Louis ENT - which is how I got his name.  I fully intend to name drop - hopefully it will earn us some brownie points with the guy.  I'm cautiously optimistic.  The only bad thing is that he shares office space with ENT number 2 - who I departed ways with on not such good terms.  I just hope I don't run into the guy while we are there. Then again, I don't really care if I do.

Tomorrow is the big day - we take Mary up north to attend college at Northern Arizona University.  She's about 75% packed and no where to be found this evening.  I swear, I haven't seen her for more than an hour since she got home from Ireland at the end of June. She's either at work or with her friends or cousins.  Sadly, she is ready to spread her wings and get the heck out of this house.  I can't say I blame her.

Thanks for checking in on us ... all is well.

My Day

Get up at 6:30am and drive forty-five minutes to my Aunt's house.  Drive my Aunt to Cracker Barrel and enjoy a nice breakfast with her. Drop my Aunt back at her house.  Drive home to pick up the girls to take them out clothes shopping for college (because, you know, they don't have enough clothes already).  Spend a couple of hours shopping. Take the girls out to lunch and then head home.  Once home, clean bathrooms, do laundry, straighten up the kitchen, suction Jack (after washing my hands, of course), feed Jack lunch, more suctioning.  Around 3:30pm, start getting Jack ready to go out to meet my family for a sending-Mary-off-to-college dinner.  Get Jack in his wheelchair.  Notice Jack turning purple.  Bag Jack with oxygen until he is pink again.  Hook Jack back up to his vent and watch him turn purple again.  Pull out Jack's trach while he's still in his chair to see if he has a plug.  No plug.  Put the trach back in and continue to bag Jack.  Change out the vent circuits because the Peep valve is making a strange noise.  Hook Jack back up to his vent and watch him turn purple again! See Jack look at me with eyes that say "please do something ... I'm dying here" (literally).  Bag Jack again and decide that Jack is not going out to dinner with us.  Get Jack back in bed and lay him down flat.  Color starts returning to his face.  Mark and I look at each other and are thinking ... want to flip to see who stays home with Jack and who goes?  Decide that I should go because it's my family.  I send Mary ahead with Hilary and Eric otherwise we are going to be late to the dinner that I planned and asked everyone to come to.  I wait about fifteen minutes to make sure Jack is going to be okay.  I look at Mark and say "it's pretty bad when you are afraid to be home alone with your own kid".  I leave to meet my family for dinner, trying to hold back the tears as I drive.  Have a nice dinner with my family, keeping a close eye on my phone the entire time just in case Mark calls.  Arrive back home.  Jack is pink and happy! Vacuum the floors, do another load of laundry, get Eric in the shower and then to bed.  Exercise thirty minutes on my stationary bike.  Get Jack fed, suctioned and ready for bed.  Mop floors.  10:30pm .... sit down!

Yep, I'm definitely living in the moment these days!

_______________________

As for what the heck is going on with Jack - I haven't a clue.  Worse yet, I don't have any confidence that there is a doctor in this City who can help me figure it out.  But, I have to try. I'm starting with the ENT because I want to rule out any granulation tissue at the end of his trach tube given that his episodes appear to be positional.  If it's not that, I guess we'll see the pulmonologist next.  If I don't get anywhere here, we'll be in St. Louis in seven weeks and maybe someone there can help us.

_______________________

Pictures from dinner .....

Have a great week everyone!

In the Moment

Now that I have "officially" committed to participating in two 1/2 marathons as part of Team Cure CMD, I decided it was time to get my running shoes on and put in some miles.  I'm going to walk the LA 1/2 again (in October), as well as the Phoenix 1/2 in January.  This evening when I was out on my walk/occasional run, I made an observation.  I noticed that I look down, not ahead when I walk.  I remember my sister pointing this out to me on one of our training walks last year.  I do a lot of thinking on my walks and I'm very focused on what's in my head, not where I'm heading.  I'm not so much looking down, as I'm looking inward.  It's safer.  I tried to force myself to look ahead on my walk and, to be honest, I really couldn't do it.  I felt vulnerable.  I think that's indicative of how I've come to live my life.  I stay safely tucked away in my own little space, head to the grindstone, inward focused .... just living in the moment.  It's a matter of survival really.  Some days it's all you can do to get through moment and, then there are those days when you just want to savor the moment.  The here and now is enough.

I used to approach life eyes wide open, full steam ahead.  Now, I don't have the fortitude to think too far into the future.  I used to be such a planner - always with a carefully mapped out destination.  You see how well that worked for me.  The last twelve years have definitely been a lesson in humility.  This evening I realized how I have changed.  For better or worse, I find myself living safely in the moment with little desire to look ahead to the future and what it may bring.

Just an observation.  

Weekend Pictures

Jack had a great weekend at Ryan House. We met another wonderful family who was there with their five children.  Three boys all around the same age as Eric - which made for a great weekend for him.   Their youngest two children have a degenerative disease, so they were definitely in need of some respite.  The mom and I and my friend all went to see "The Help" on Saturday night. Great book and equally great movie.

Eric hanging out in the TV room (where a lot of Wii was played)

Jack and volunteer Greg having fun in the pool area

Eric loves the pool at Ryan House because he can touch the bottom anywhere in the pool

That's all I've got.  Not much going on this week. Next week will be a busy one, so I'm just going to enjoy the calm before the storm.

Have a great week everyone!

Random Update

☞ The boys got haircuts on Saturday 

(don't have a good picture of Jack yet)

☞ A month after I dropped off Jack's enrollment forms, I finally heard from the school district.  Someone called to tell me the date and time of the meeting.  Didn't bother to check with me to find out if my schedule was clear - just set the meeting.  I was tempted to tell them I wasn't available just so they'd have to rework all their schedules.  But, I decided that wouldn't be the mature thing to do and it wouldn't serve Jack well for me to make.a.point. So, I just closed my eyes, took a deep breath and repeated several times "it's not about me, it's not about me".  Then picked up the phone and told them I'm available.  I do need to call and make sure that our first meeting isn't the actual IEP because I'm not sure how they can have an IEP meeting for a child they have never met or evaluated.

☞ Tonight when Eric was getting ready for bed, I asked him if he had brushed his teeth, he gave his typical automatic answer of "yes". When I told him that he, in fact, had not brushed his teeth, he looks at me and says "you are the only one who can crack my nut."  In other words, I know when he is lying.  He should know by now that nothing gets past mom!

☞ I'm putting together a team to run/walk the PF Changs Phoenix 1/2 marathon in January 2012 to support Cure CMD.  If you are local (or even if you aren't) and want to join us, let me know.   Anne Rutkowski (founder of Cure CMD) and her husband plan to come over from Los Angeles to participate. Should be lots of fun!  I haven't decided yet if I'll be able to participate in the LA 1/2 in October -- I'd like to, but don't know if I'll be up for it because I've done little to no training since the last 1/2.

☞ We are heading back to the Ryan House this weekend.  Jack hasn't been since January.  By the time we got around to scheduling our summer weekends, they were full. So, this is our first opportunity since the first of the year.  We now have a weekend a month scheduled through the end of the year.  Because it's been so long since Jack's last visit, I'll be staying with him this time.  It's not much respite for me when I have to stay there, but I'm just not comfortable leaving him to fly solo (without his mom) the entire weekend.

☞ Jack is still having random periods of respiratory distress.  It seems to happen mostly when he's in his wheelchair.  I'm convinced that it's because he's not being adequately ventilated either due to his cuff not being inflated enough or he needs his vent settings adjusted up.  It's a hard call when it comes to his cuff because if you fully inflate it, he loses his voice and we don't want to do that to him. But, at the same time, we need to make sure the vent pushes the air into his lungs and not up and out through his mouth.  He needs a vent check and I just need to suck it up and take him to see his pulmonologist.  I just know he'll want to do a "sleep study" (and I use that term very loosely considering we are talking Phoenix and not St. Louis).  It's times like this that I wish we still lived in St. Louis.

☞ I made myself a doctor's appointment for a complete physical (because I'm always tired as hell).  The last time I saw my primary care doctor was in 2003.  He asked who I had been seeing in the interim. I told him no one.  His response - "you don't do doctoring?" (if he only knew!)  I passed the EKG/stress test with flying colors.  But, based on the results of their hearing and vision tests, I think I'm deaf and blind.

☞ Due to the hard work of my dear friend Sarah, Children's Hospital of Orange County (CHOC) has signed up for the Touchstones of Compassionate Care program and will be implementing it hospital-wide for all of its doctors.  Very exciting news.  One hospital at a time - we will make a difference.

☞ Mary moves into her dorm in two weeks. :(

☞ Hilary starts classes at our local community college in two weeks. :)

☞ Random picture:

(Doesn't everyone have trach tubes just lying around on their counters along with the mail?)

☞ Words of wisdom

If you want others to be happy, practice compassion.  

If you want to be happy, practice compassion. 

This Kid

THIS KID ...

scared the bejesus out of his parents today!  When Mark showed up to get Eric at the bus drop off ... Eric wasn't there.  He didn't get off the bus.  Panic set in.  After a flurry of phone calls, it was discovered that Eric failed to get off the bus at his stop because he was "in the back of the bus with his friends working on his homework".   Grrr!  Mark's exact words to me were "I'm going to kill him!"  Lest you think that Eric is the high compliance, studious type and how could you possibly get mad at him for missing his stop because he was doing his homework!  Let me assure you that the only reason he was doing his homework on the bus - hurry up style - was because he thought he'd then have time to get on his DS the minute he walked in the door.  Ah, the best laid plans.  I asked Eric what went through his mind when he realized he missed his stop.  His response ... "Dad is going to kill me!"*

The really sad part is how we parents immediately go to the worst case scenario when we don't have our children in our sight.  I hate it.  I hate the fact that today our kids have to be tethered to us for us to feel safe.  But, that's the reality of the world we live in.  In any event ... Eric is fine and if he's smart, he'll make sure he doesn't miss his bus stop again!

*Mark caught up with Eric at the next bus stop - a school about 5 miles away!

THIS KID 

is giving me grief and he doesn't even know it.  We found out this week that his two-day a week nurse who is very good is leaving.  This having to constantly worry about "child care" is so hard.  You shouldn't have to worry about it when your kid is almost thirteen years old.  It just bums me out that we have to orient yet another nurse and then decide whether this person is not only competent to care for Jack, but also someone I don't have to freak out about having in my house when I'm not home.  I'm growing weary of the relentless worry that goes along with having to depend on other people to keep my child alive.  (Angie -- hurry back!)

And, finally ....

THESE KIDS

are both in desperate need of haircuts!  All I need is about six more hours in the day to get it all done. 

But, at the end of the day ... it's all good!

Thanks for checking in my friends.