Tuesday, June 1, 2010

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 



Alicia said...

Oh Jen, I have tears in my eyes! You all have been troopers through this entire medical challenge. You always have such a wonderful way of looking at things. You updates are brilliantly written!! I just have sooooo much admiration and respect for you and Chris. Winston is so very blessed to have you guys as his parents! XOXO alicia

Carrie Windham said...

Oh Jen, this all sounds so familiar...Rowan's medical issues are different, but the equipment and way we have to travel sounds exactly the same. The first time I went through security took an hour and half and I bawled my eyes out. He is also on pulse-ox, g-tube feeding pump, intravenous tpn infusion pump, C-PAP, and has a suction machine too. And I don't know whether to laugh or cry about you and Chris's ingenuous method of skyping the pulse-ox monitor while you're away...that is AMAZING! Rowan has spent a little over 400 days in hospitals (in San Antonio and Cincinnati) and we live in New Braunfels, Texas...so needless to say, I go to the hospital and Brian stays home with the other two (or travels for work-wine business). I rarely get more than an hour or two of sleep during those week long and month long hospital stays, and never thought about skyping the monitors/machines. Anyway, so glad to see that the trip went well and will pray for the surgery coming up this month. Rowan just had surgeries number 40 and 41 last month during another 35 days in the hospital, so I feel for you and am amazed at how well you seem to have it down girl! Take care of yourself too, God bless, Carrie W

Marti said...

Dear Jen--
I can't even imagine how you manage everything so expertly!! You are truly an amazing woman and mom.
So happy to hear your "good news" report and we are praying for the success of Winston's upcoming surgery.

Anne said...

Jen, you have an amazing attitude and are such an inspiration. I hope you are all recovering from your hectic week and virus. You, Chris and Winston are in my thoughts and prayers. I wish you the best with the upcoming surgery.
Warmly, Anne J.

Thomas said...

Ditto Jen! Being a new client of yours, I didn't know all that has happened previously in your lives. It is amazing to hear what you are all going through; how such a positive and strong/supportive family you are.

James said...

Thanks for the update Jen! Glad you and Winston had a safe trip to and from New York! And it's great you're keeping a blog so that others may know what you guys are going through. Hopefully the info helps many others too through tough situations!

HeidiM said...

Hey Jen - So glad to hear about the possible removal of his trach! Nice to know things are moving along. I know the trips to NYC are a pain - it's a pain for me and I'm a full grown adult with out monitors:-) You guys are troopers. Your son will grow up to appreciate you and your sacrifices more than you'll ever know. Isn't Waner the best:-)

westvr said...

Jen! UR AMAZING!!! Blessings to U, Chris and Winston! Jeremiah 29:11

Stacey said...

As usual you are amazing! I can't imagine that travel experience - so much stuff! Brilliant art on the carseat though...and he does not look like Chris Farley. :) Keep your sense of humor, and seriously CALL me if you need ANYTHING!!!!!

Kim said...

Hi Jen-Kim and Caroline here....thanks for the update. We are both in awe of the way you are able to take all that is thrown at you and, not only run with it, but truly make it a good, learning situation. As far as the skype thing, we don't have it, but if you need someone to moniter the machine so both you and Chris can sleep, sign me up. I would love to help. Please consider it! BTW, you and Caroline must be secretively related, because her cooking skills are almost identical! Take care and God Bless you!!!

Gretchen said...

Jen- I laughed and I cried all within 10 minutes of reading this blog....I am sooo excited to hear the wonderful news about Winston's trach removal...That is amazing! He is so amazing! I will continue to pray for him and for you especially on those trips to NYC...Oh my goodness ...So good to hear from you yesterday! Please call anytime if you need anything...I am always here for you guys!
love, Gretchen

Rachel said...

Jen, I wondered what traveling was like with Winston - I'm impressed by your ingenuity with the lazy boy seat and sign and well, everything! Your stories are incredible, and I know you are going to write a bestseller about all of this one day. You guys are always in our thoughts but I'll esp. pray for the debulking on June 10th. Love, Rachel

Ellen said...

Wow, girl, you travel lightly. Thinking of you today, hoping surgery goes well. Those are such adorable photos of Winston.

TASHINA said...

Hi Jen,
just writing to say every night I say a prayer for Winston! It was very nice seeing you yesterday- sometimes I can't help but wonder how did that passenger's day going after our interaction. My name is tashi aka the security woman you cried with that day... And went on to cry to my hubs and mom about you and winston's trip through my duty location. Yesterday I wondered how do you handle it all, all your belongings; Winston, and the stares/inquires; but reading your blog I know your truly amazing. The day we crossed paths on "lane 4" was a great day for me, not only are you a great mom but a beautiful spirit who bring a sense of calm to those you speak to and enlighten. Seeing you and Winston yesterday was a good feeling, know that you guys were at least ok... Seeing that you were in good spirits, and that winston's shoes are called "skiddies"!
In my heart I know that Winston will be fine and the things he has to endure are just trials that will make him a great man and an amazing being just like his mother. As I said I pray for Winston every chance I get not out of sympathy but empathy... I wish I could have hugged you yesterday (work rules don't allow) but here is my electronic hug.... God bless

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Anonymous said...

Dear Jennifer,

I am Lilly Gold, the owner of the sit n Stroll company. My assistant Ken Showed me the pictures of Winston. I was deeply moved.

When I was a teenager my younger brother Buddy died after a long bout of Hodgkins disease. As you can imagine this experience colored and shaped my life.

My company is in Minneapolis Minnesota. Many parents and grandparents are here temporarily with their little tots getting treatment. They often stay at the Ronald McDonald house.

Sometimes I will see an obviously ill child out at the lake with their parent or grandparents. It breaks my heart.I very quietly go up to them, introduce myself, tell them about my brother, and have a free sit n stroll delivered to their temporary residence. It is therapeutic for me. I ask two favors in return, that they not contact me in the future because I get too sad and that they donate it back to the Ronald McDonald house when they are at the end of their journey.

when ken showed me Winston's blog it occurred to me that I can do so much more. Sit n Strolls are very expensive, around 309.00. Not all parents can afford the luxury of owning one to transport their ill children. I am a small company and I cant afford to give free sit n trolls away to all of the sick children but I can certainly make them available for my cost.

I would create this program in memory of my brother Buddy and because it was inspired by Winston we could call it the Winston's Buddy Program.Please contact me at my e-mail Lillygoldinc@aol and let me know what you think

Warm Regards and my thoughts are with you.

Lilly Gold

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