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