So within a few days after the drain bag came out, Winston had such increased swelling that it seemed like his tissue wasn’t absorbing the fluid fast enough and it was possibly collecting. The NYC docs thought that Winston may need the drain bag back in and they said we could try to find someone locally to do it. But to be honest, you want the people who know him, know his case, and really, really, really know the dynamics of the malformation to do it………. just in case. Remember we have experienced the worse case scenario when Winston coded a year ago due to the Venous Malformation in his tongue. (I absolutely cannot believe it's been a year since that surreal event!)
So we booked a last minute plane ticket and within 24 hours Winston and I were heading back to NYC for our third trip within 7 weeks.
“Yuck! I stepped in gum!!” I yelled forward to Chris who was pushing my suitcases down the sidewalk of the KC airport.
“Is this foreshadowing to how my trip is going to go???”
Laughter from both of us.
I wasn’t laughing when five hours later I realized I had forgotten my debit card at home, cried twice because the car service and hotel both were giving me a tough time and wouldn't let me check in, and then to top it all off, I bent over and split my pants W-I-D-E open.
Which even I had to laugh when that happened….how could you not? (See evidence in photo from the left! I am just SO glad that I packed a back-up pair!)
Not to mention, Winston dropped a big pooh in his diaper as I sat in the lobby of the Holiday Inn waiting for Chris to fax them payment info at 11pm at night……..ahhhhhhh, a day in the life of The Bertrands.
I like to think of myself as the real-life Bridget Jones of the Special Needs world............. :)
And just to be sure I felt like a complete failure, Winston’s swelling seemed slightly improved by the time we were checking him into surgery the next morning.
So long story short, the NYC docs felt that there was no need to put the drain bag back in, which is brilliant, and basically they stitched up the drain bag area, slapped some glue over his face-lift stitches and changed his trach………….the most expensive trach change EVER!!!!!!
Of course I’m very, very, very happy we went and I didn't find it a waste of time at all. Because what if it had been something, hindsight doesn't help in life or death medical scenarios. But it is funny as a parent when you take your kid in and their cough disappears, their temperature fades, and so on. You feel like your credibility is shot!
“I SWEAR I think with my head and not with my heart when approaching these situations,” I tried to explain to the doctor.
“Maybe it’s because this is our first post de-bulking experience……”
I tried to restore what was left of my credibility………..
Dr. O was lovely and kind as always and of course didn't make me feel bad in any way. But I did feel like a complete wanker!!!
But the peace of mind we now have is price-less! (Well, not priceless for Uncle Phil and Auntie Cathi and the ladies of St. Joseph, Missouri…..it wasn’t priceless for any of them!!! Which by the way, thank you so much to all of you for your help!!!)
So Winston was in and out in just over two hours and then passed out in our jazzy Holiday Inn hotel room. But since we had time to burn, had to check out of our hotel room and wired money from Uncil Phil and Auntie Cathi (since I was still debit card-less), Winston and I decided to go do a power tour of the Museum of Modern Art…………………………yum!!!!!!!!!!! It was pure heaven for me, I must say!!!!
I, however, could not believe we were there! Every single gallery I went into, I gasped and giggled with delight!!! It was like Christmas in every room!!!! I wanted to run around like one big art nerd hugging everyone and saying, can you believe it, it's "Picasso's Les Demoiselles D'Avignon" or "Warhol's Campbell Soup Cans".........everything was there!!!! I seriously had a goofy grin on my face and looked like a mad, mad woman.
It was like National Lampoon's European Vacation when you saw the Griswolds do the sped up version of touring the Louvre. Picture it, I was pushing Winston in his La-Z-Boy on wheels, with it's written message on the front, at a mad pace and smiling and laughing wildly at all of the grandeurs of the art world..........
And I totally have to say, that Winston is the best accessory EVER in any crowd. I laugh because I don't ever think of him as different. So I can make crude jokes like this because I just think of him as a fabulous toddler! But when you're in a crowded art museum, people give you sympathy eyes and then nicely move out of the way which works great when you're trying to get a peek at Van Gogh's "Starry Night"!!!! I can rent him out for concerts, plays, you name it!!!! :) And please don't be offended by any of my humor. Honestly, it is my coping mechanism. I would die if I ever offended any of you because of my dark humor. But let's be honest, Winston is going to have to have a strong sense of humor to fend off the cruel comments by other kids.
And in case you have no clue who painted any of those paintings, it goes as follows: Rothko, Picasso, Chagall, Van Gogh, Picasso again, Lichtenstein, and Warhol. Not to mention all of the other surreal pieces we saw!!! (My phone ran out of juice just as I hit my favorite Frida Kahlo!!!!)
Did you know I was such a proud art nerd???? :)
And I have to tell you about a father I met when I was walking Sophie and Winston the other night. The father stopped to talk about our puppies and after peeking in the stroller at Winston, he brought up that their son ws born in the NICU (neo-natal intensive care unit). I always forget that one look at Winston gives it away that we were probably there, too. But so long story short (as always), his son was deprived of oxygen for ten minutes and born three months early. His son survived but has had a lot of learning obstacles along his journey. In our conversation, an innocent comment was made by the dad about "how smart he could have been".........and not to bombast this father because he spoke very lovingly of his son. But for a moment my heart ached and I thought I never, ever want to talk about what could have been.
Every single one of us special needs parents joined a club we didn't sign up for but I like to think we all have a knowing twinkle in our eye that we cannot live the lives that we do with our amazing children and not end up better people for it...............remember every single situation is about perspective. You get knocked down, you get up and say, "Is that all you've got life???" :) Or at least that's what I try to do and realistically some times it takes a little longer to get up but we can all do it with whatever life throws at us!!!! Special needs child or not........
So, remember that when you get cut off on the highway, get a bad haircut, lose your job, have medical issues, whatever it is--- big or small..........tell yourself, "It's completely poopy but I can figure this out!!!" Take time to digest it mentally but then think of your situation as a detective novel. How can you find the solution? Easier said than done sometimes I know, so, remember it's okay when you just want to feel sorry for yourself, too! :)
And on that note, that's all for now! NYC docs said give Winston a month to heal, take photos and send them in and they'll decide what will be next!!!!! :) Big, big hugs to all of you! I'll post my Oprah adventure next. :) It's sad and hilarious at the same time!!!!
Cheerioooooooooooooo and have a lovely day whatever day it is that you read this!!!