NYC: Twice in ONE month......wowzahs!!!

Now I have to start off this entry by telling you all that I'm a bit heavy in the heart as I write this.

Never ask yourself if things can get worse because they always can.........................................

After surviving a second trip to NYC in one month, upon landing and basically floating out of the gate
in a sleepless daze, I was so happy to see my lovely husband.  Within a minute, he asked me to sit down
because he had some bad news.  And then he told me.  Berri (our female chocolate lab) had passed away
suddenly from what they think was an anheurysm.  Yes, she was eleven years old, but we didn't have an inkling that she had anything wrong with her, she was still very spritely!

Now, if you're not a pet person, I'm sure you're thinking, "Jen, you've been through worse."  But really, this has felt like the worst thing ever because Berri was there every moment of our day like a shadow making us smile and laugh. She was healing for our often hurting souls.  Our lovely snobby cats could care less about what we're going through (even though we love them just as much). 

So I write this going, "Really life???  Did we really need that one to happen now on top of everything???????!!!!!!"  And of course as always, I have to find the positive.  Her last moments included pigging out on a doggy ice cream and she didn't suffer for one moment.  :) 


Okay, so our latest NYC adventure...............................

I'll start by sparing you the suspense, I did not cry going through security this time!!!  :) 
 
Within a month, Winston and I have had to travel to NYC twice for treatments/surgeries…………….wow that was a lot!!! This kid is a seasoned traveler, I must say!!!! However, I know that he will start to catch on eventually that airplane rides with mommy never really end in fun!!!!

When we left to go to NYC for this surgery, I have to admit, I was very confident in my abilities to travel “han solo” because I had just done it less than two weeks prior. However, in my arrogance, I managed to forget my toothbrush, my pre-written Winston notes, and formula for our hospital stay (b/c their formula has iron in it and always makes him vomit). But forgiving myself for laxing in the well oiled travel machine that I had become, I still managed to feel pretty good about it all.

Chris and I have our airport goodbyes down pat. He gets a gate pass to help us on the plane. The check in people for the Midwest/Frontier Airlines pretty much know us now and treat us so lovely. Our “sit n stroll” stroller is still utterly brilliant and this flight out, I managed to not spill a single thing on me, and I now give my surrounding passengers too much information in terms of what to expect to see and hear from Winston and I.

I basically stand up, get the attention of everyone around us and since I have no pride any more say, "Just an FYI and this will be too much information, but you'll be hearing a series of beeps and noises and see lots of medical things going on!  My son has a rare disease and I only tell you because I would want to know what in the world is going on in that seat!!!"

Hilariously everyone always looks at me like I’m completely bonkers when I offer them this info. But secretly, I know they appreciate it deep down. One because it saves them any seconds of their life spent wondering what’s going on with that kid. And two it’s a great story for them to tell to whoever picks them up at the airport and they have a dull moment.

I have to admit, this trip I was flying pretty high feeling like, “I own this!!!!!   There are going to be no good stories to write about this time!”

And then there appeared my first story on the adventure......

When Winston and I arrived at Laguardia, we always load up Sherpa style, take the elevators down to grab our big bag and then once we have our luggage, we call our car service to say we’ve arrived. They then give you permission to go wait in the middle island and your car will arrive. The car service always asks when you call, what you are wearing to give a description to your driver.

“Black shirt (very original I know), glasses, taupe pants (yes, I use words like taupe even in situations like these). And I have a baby in a blue stroller.”

I spared telling him it was a La-Z-Boy on wheels. I asked if my car had a number and the guy said no, but there will be a sign with my name. Minutes later, I got a text that it would be a silver Lincoln Towncar and there was a specific car number. So needless to say, Winston and I were hanging out trying to look cool and casual rather than the exhausted pair that we were.

So as I waited, I saw a blue minivan pull up and in the front, lit by the overhead lighting, I could see a man talking and waving his arms in his car. My first thoughts were, he’s talking to his passenger in sign language. I casually kept glancing over, and I see him doing these arm movements that are almost tai chi in spirit along with a rant.

He pulls his van in front of me, gets out, opens the back of his van, comes up to me and points at his phone saying something that sounds like Bertrand. His van had the car service sticker on it and I thought maybe they sent a different car. So in that moment I focused all of my energy on him. I’m a friend of the special needs community so I didn’t want to take away someone’s lively hood because they were ecclectic…………..

I am NOT however, a friend of the Krazy Town community!!!!!!!!!!

Every part of me screamed, “DO NOT LET THIS MAN DRIVE YOU AND YOUR CHILD!!!!” This man continued his tai chi, all the while ranting about stuff I could not make out. And I’m 100% sure it was not a foreign language, it was English and the rantings of a mad man.

As he started to grab my bag, I said, “No thank you. We’re fine. I have a friend coming to get me.” And I grabbed my bag back.

He stopped, stared at me, continued his rant and seriously bizarre tai chi movements while I quickly got on the phone to the car service. The man got in his car, pulled up even more in front of me, and then rolled down his window and continued ranting. I just remember looking at the guy on the curb next to me and saying, “What in the h*ll was that??? I’m suppose to pay to ride with that????” And then out of the blue, came a guy who was smiley and nice and said my name.

“Mrs. Bertrand?”

What, huh???? Here was my driver all along???!!!! The new driver must have thought I was a quack because I was SO relieved to see him that he could have been a serial killer and I probably would have gotten in the car with him.

Now maybe the other guy was suppose to get someone else that had a name that started with a “B”. But either way, that man should not be driving anyone, anywhere. And yes, I called the car service and reported him. I’m not sure they got how utterly bizarre and scary this incident really was and you may not either. I would have to reinact the tai-chi and rantings for you to totally make you understand. And the dead look in his eyes could have been the clincher.

I have to totally admit, fast story, I promise, it reminded me of when I was a senior in high school and my mom and dad and I were driving up to the University of Kansas from Biloxi,, Mississippi to check out the school.

We had rented a Lincoln Towncar (evil Towncars) and it had managed to break down in Hattiesburg, just thirty minutes into our journey. Needless to say I was bored and went to the pay phone (it was 1993 hence no teenager with a cell) to call a friend.

My parents were at the car and the pay phone was right next to the gas station. I was blabbing away, like I’m doing right now, when all of a sudden there was a man in the booth doorway. He put his hands on both sides of the opening and filled the space.

“You with anyone?” was all he said. I remember staring into his mirrored glasses and thinking this isn’t good.

Then in the distance I could hear “##@@!!!, you get away from my daughter!!!” and my dad running across from the parking lot. As soon as the man saw my dad, he took off in his truck. I have to admit, I was pretty shaken up and made my mom go with me into the convenient store when I had to go to the bathroom. The clerk had never seen the man that we described. Which now when I think about what he looked like, he looks like he could have been the construction worker in the Village People. But at that time, it wasn’t very funny.

So needless to say, this event in NYC though nothing similar in nature took me back to that exact moment of standing in the phone booth. And as I rode to the hotel with Winston safely buckled in, I really wondered how that story could have ended had I thought he was my ride and gotten in the car. Creepy!!!!!!!!!!!!!!!  Just please always, always in life, go with your gut instinct!!

And just because I find it hilarious, on the flight home, I swore I was sitting next to a dodgy guy who wanted to be the next shoe bomber.  I kid you not, the guy made the man in the seat next to him move his bag from the overhead carrier so he could have his bag directly above him.  Then he weirdly counted the seats in front of him and not in an OCD kind of way.  Once again, I have to remind people that I am a huge fan of people with special needs!!  The more ecclectic the world is, the better, so I try to be aware of others!  :)  But this man gave off the wrong kind of vibes.

"That's it", I thought, "I will do whatever I have to if he tries to make something go down." 

Now you may think I'm utterly paranoid but I have had a few lightning strikes of bizarre occurrences in my lifetime so it really would not be a surprise to me if this was to be my next ecclectic event.  But I was determined to yell "help", jump on his back and take him down if he tried anything. 

The poor guy, I stared at him as secretly as possible.  I watched his every move.  Nothing was going to happen on my watch as I had Winston's pulse oximeter machine cradled in my arms............

And then I hilariously woke up and he was in the bathroom............."Ughhh!!!  I missed it, he's putting it together."  Now I have to say we were lucky everyone was not depending on me because I was so exhausted.  And weirdly the guy did come back from the bathroom rubbing his head and showing signs of anxiety.  But more than likely the poor guy hated to fly or had a migraine.  Either way, it was funny after we landed!!!

Now for the point of this blog, Winston’s surgery!!!!!

I had no choice, I had to add the extra line to the sit'n'stroll...........life's too short not to laugh!!  And after all of Winston's surgeries when he no longer looks like Chris Farley, we're going to "x" out his name and write "Brad Pitt"..........  :) 





Dr. Waner's goal with this surgery was to "de-bulk" the scar tissue that had formed from a previous local sclerossing which caused a mass of scar
tissue.  We  have always called it his Frankenstein Bolt and are happy to say goodbye to it!



VIDEO OF WINSTON PRE-SURGERY...........



It took only three hours for Winston to receive his "Joan Rivers Face-Lift"............

So what now you ask?

Winston will have his stitches and drain bag removed and slowly a little bit at a time, they will work around his face with various de-bulking and sclerossing.  I'm assuming we get a bit of a break now which will be nice.  And I have to tell you that I cried tears of joy after seeing Winston's "Frankenstein Bolt" gone.  Not because I care one bit how he looks but only because I know with every surgery and every treatment, it will make his life just a little bit easier because kids are tough.  But of course we will help Winston  to be strong and proud of who he is no matter what. We will teach him to use humor as a form of protection and strength.  And we will eventually have to just stand back and watch like all of you other parents out there hoping you did everything right!!!

And in case you're wondering, yes, we will get a puppy eventually.  Our house is too quiet without a dog and we want Winston to have one growing up.  Berri will never, ever be replaced but as we've learned through all of our adventures, you have to cherish the happy times and just constantly redefine your life.

Que cera, cera............................   :) 

NYC..........It's that time again!!!

Well kids, it was time for another NYC round of treatments......ohhhhhh, yeahhhhhhhhhhhhh!!!!  :)

Winston and I went on our own and Chris stayed behind to keep an income coming in.  So basically, it's tiring from all sides because even though Chris isn't with us physically, he ends up doing all-nighters, when we're in a hotel, skyping Winston's pulse ox machine while I try to get some sleep.  That way if Winston's machine alarms, he makes sure I get up to suction him, etc.  I usually wake up but I sleep better knowing he's there.  It is the best thing ever!!!

Now, what is a trip to NYC like you ask?

Well, you didn't ask, but it's kind of fun to explain because it's actually something I'm very, very proud of. You see, I'm a girl who can't manage to make soup from the can and I mess up making hot chocolates. (Sadly, both of those are very true examples!) So, the fact that I can travel with our child with medical issues and bring him back in one piece I find very impressive. :)

I laugh to myself secretly as people watch Winston and I before the plane boards. 

You so know I'm the lady no one wants to sit by or stand behind in line for security.  And I really don't blame them but it does make me laugh.  And I always tell people around me not to worry about having to sit by us  because Winston has a trach so he doesn't make sound! 

The equipment I travel with on the plane is as follows:

One Pulse Oximeter Machine--Hooked to a sensor wrapped around his toe and monitors Winston's oxygen and heart rate.

One Oxygen Concentrator & 2 back up batteries (heavy suckers)--Winston needs oxygen supplemented b/c of altitude and cabin pressure.

One Suction Machine--Use to suction his trach (sounds like a lawn mower and usually gets you a few good looks---always hilarious to turn it on in a quiet place like Starbucks)

One Feeding Pump & Accessories  I have to admit, we have it easy in this department, we just plug him in to eat which is WAY easier than a healthy child so no complaints here!

An Emergency Ambu Bag--better safe than sorry, it's what's used in CPR and is actually what saved Winston's life when he coded.

Now you take all of that fun stuff and you throw on top it, real baby stuff like diapers on the go, forumula, toys, dvd player, books, teething stuff and well, you can just imagine.............  :) 

Winston and I sit in coach amongst everyone and set up our mini hospital room.  And nicely, by the time we land, people who have sat around us are pretty nice because they've secretly watched the activities going on in our double seat. 

Winston passed out on the plane. 

The Pulse Ox in the foreground keeps me posted on his oxygen and heart rate!

Probably the most stressful part for me in the traveling aspect is going through security.......uggghhhh!!! 

Some times I get a security guy that's kind enough to let me go through seperately and help me with everything.  This trip home, I just started crying in the Laguardia security line because I didn't feel well, I was exhausted and the thought of going through the regular line just stressed me out! 

Luckily a lovely supervisor helped me and when I thanked him profusely he just looked at me kindly and said, "I have family."  And the other security woman started crying when I was crying because she knew how it felt because her child had been in the NICU..........can you picture the mess I was creating in security!!!  :)  But the moments of just being human, where a stranger becomes a friend in an instant, were just amazing.  I have to say that seeing beautiful human moments like these has been the best result from our whole situation (other than Winston that is!).
And if you're thinking, "Jen, it's just security, don't stress!"  Let me explain, that when I go through security, I have to take the oxygen concentrator out of my bag, I have to take my lap top out (b/c it's our dvd player), I have to take out all of my Winston meds and liquids that are used for formula and medicine flushing, I have to fold up the stroller, all the while holding Winston. 

I have it to a science now because I don't wear jewelry, I have my liquids all in a ziploc ready, I keep the oxygen concentrator in a compartment on its own, and I have slip off shoes...................I'm focused and I'm in it to win it!!  :)  Or at least that's what it feels like on the inside.  I challenge myself to be not as unfun to be behind in line as people think. 

This trip I was really sweating it because Winston is now almost a toddler.  His carseat is now HUGE, his stroller is HUGE.........so I was secretly freaking out, how was I going to pull this off???

And then I found it...............online there's a thing called the "sit n stroll".  It's not an ideal only car seat.  But if you travel often, this seems to be the way to do it!  It's a car seat that turns into a stroller.  A handle pulls out of the top and wheels drop out from the bottom.  And it hilariously looks like a La-Z-Boy on wheels!!!  :)  And not only that, it worked brilliantly!!!!  You just have to know a few tricks about its weaknesses but it's worth every penny!!!

I look at this La-Z-Boy on wheels and I hear choirs singing because it saves me a huge hassle.  And not only that, I took it upon myself to add some art to it.

So often we're in public places and people don't want to stare and they try to be polite.  I've been determined to tell people.  "Hey, I'm okay with chatting about whatever!  I'm an open book, ask away!!!  And not only that, no question is stupid!!!"  Winston's fabulous new stroller provided me with the perfect spot to do just that!  And so with a few trusty paint pens, his message was simple...........

I have decided I'm going to add, "And oh, yeah, I live in a van down by the river."    :)

I know, I know, he's going to kill us when he's older and we've done all of these things for laughs!  But it was such a lovely ice breaker and it was fun to watch people laugh when they read it! 

Now, as many of you parents can relate, traveling with a toddler is always eventful.  It was always much easier when he was an infant and just a sack of potatos to carry around.  This time he kept me busy non-stop.  And I carried all of the comforts of home on my back like a sherpa only to discover that he was happiest to play with his toes, socks and a water bottle.  :)

   

This trip, however, I have to say was the best trip ever in terms of treatment and how quickly Winston has recovered!!!!  They sclerosed 15 ml of doxycycline in his left cheek and chin (mainly in micro-cysts).  They also did a bronchoscopy of his airway and to our excitement, they were happy to report there was no disease in the airway.  They are thinking he will be able to lose his trach in six months to a year...........woohooooooooo!!!  Now that is lovely!!!!  We're in absolutely no hurry but it is lovely to know it's not as far out as we once thought.

  

   

Now I must admit, I always prepare my heart for a 360 in everything.  So many times things change, etc. so I never fully get my hopes up.  It's just easier that way.  But you do secretly get excited to think that we may have passed the eye of the storm.

We were asked to go back to NYC on June 10th for a surgery. 

The brilliant Dr. Waner will surgically remove scar tissue from a previous sclerosing done locally in KC that created some issues and whatever other clean-up work he can do.  (They call it de-bulking which cracks me up!)

Dr. Waner did say that you have to be really careful b/c of all of the facial nerves when doing this.  But when he says it will be okay, you really do believe him.  And in case you're like me and you don't remember your seventh grade health class, here's a map of the facial nerves.

Winston, Chris and I are very, very happy to be home together again!!  Winston and I caught some lovely respiratory virus somewhere along the way (hospital and airports......hhhmmm, the two worst places to pick something up) and now we've shared the virus with poor Chris.  So needless to say our house is not a fun place to visit right now!  But we're resting and regrouping to only do it again in less than two weeks!!!!!!!!!!! 

Good times, good times!!!!  :)  Keep you all posted!!!!  jen