First Day Post Op - walking, walking, sitting sitting, oh and EATING

Morning the day after surgery.

Getting ready to get up for the first time...

First time standing up!

First walk in hall, LESS wobbly than before surgery....

I couldn't contain my joy at seeing
her walk LESS than 12 hours after surgery...

And sitting in the chair, instead of BED.

Umm.  These drooping eyelids and the attitude
SHOULD have been my first indication that
the narcs were  getting to be a little too much....

Drawing or coloring is ALWAYS a favorite...

Knocked Out.....

9 May 2019 - POST OP, Day 1

• Raring to go!  Walked first thing.
• Pancakes and bacon for breakfast.
• Pushing the pain pump 27 times....the ice pack is our "other" best friend.
• Someone likes to draw and color while watching the "X-Files"
• Sorry Lena I know you are post op but I gotta take this history final....
• A few indicators before the night time that she was having some issues.
• Respiratory depression, the MET team, and a change in pain PCA...

Jen's tedious version of events....9 May 2019-

Raring to go!  Walked first thing- Lena actually woke up a couple times during the night already talking about getting out of bed.  I explained that, "we may want to wait until the catheter comes out honey...."  Somehow I placated her until early morning.  Luckily, Lena had a great nurse and the foley was out early in the morning, clothes were changed and she was up and off!  She did SO well.  She wasn't even wobbly.  Her legs were sturdier than even in the airport on the way here!  We had worried about a cane, or walker, etc...but the "IV tree" is enough for now. 

Pancakes and bacon for breakfast - She had a few bites of pancakes, hot chocolate, and some bacon for breakfast!  NO PAIN WITH EATING.  I went down to the cafeteria and made friends with the cook, ordering a bacon omelette (FORESHADOWING:  Omelettes would be my morning nutrition for days to come...)  The cashier told me I looked like a "regular"... wasn't sure that was a good thing?  Anyway Lena settled in for a day of walking and healing.  She walked two more times before bedtime.

Pushing the pain pump 27 times....the ice pack is our "other" best friend - Soooo pushing the Dilaudid pain pump every 15 minutes wasn't quite keeping her pain at bay...so they were augmenting with Toradol.  She was doing so well, I just figured we'd keep with that until someone wanted to get her on oral meds...around day 2.  BUT the two times later that she walked, she would get right to the bed or chair and pass OUT.  Like drool down her chin passed out.  Also the ice packs on the incision were a must...just enough cold pressure that she really avoided any swelling! 

Someone likes to draw and color while watching the "X-Files" - In between walking, peeing, and naps was Lena's drawing and X-Files time.  I never watched X Files.  The main characters kinda bugged me.  Plus I ain't got time for series TV.   I just was wondering, wouldn't the loopy meds make the wierdo plotlines kinda freaky?  Not sure, and I keep forgetting to ask her....

Sorry Lena I know you are post op but I gotta take this history final - So I had ONE more online final to take...over 9 chapters and a bunch of supplemental info the professor told us to watch (that I hadn't had time to watch)...so all throughout Lena's first night and this day....I was studying 20th and 21st century history and taking notes for the 2 hour final.  I maybe mentioned it once, twice or 27 times as we prepared for surgery because one of the first things Lena said upon waking up from the surgery was, "Did you take your final?"  I finally found a 2 hour opportunity during one of Lena's drool naps - I got 188 out of 200 points....and then an opportunity for 12 extra credit points made for a 100%....got a 98 in that class.  DONE WITH THE SEMESTER.  Lena actually took one of her final exams in the RMH before her surgery...and she actually has one more English Essay to complete by next week....she tried on this day - but her vision was so blurry....

A few indicators before the night time that she was having some issues - By mid day,  Lena was experiencing some obvious side effects from the narcotics:  Itchy eyes and face, rashing a bit on face and incision, super droopy eyes, and low respiration.  She had been having a hard time taking deep breaths ever since the surgery...which is a concern because fluid and inflammation can result if you are laying down alot.  Each time she would fall asleep, Bleeping Betty would sound after too long...that she wasn't takine enough breaths per minute.  Her CO2 reading was generally always between 43 to 52 (we had been warned to watch for anything consistently above 45.)  I took a few pics before she passed out for a mid evening nap....and looking back at them - I maybe should have had an inkling of what was to transpire...

Respiratory depression, the MET team, and a change in pain PCA...So as we got into that second night...Lena's eyes were really red (the skin around them was really irritated).  And although Benadryl had been suggested, her eyelids were so heavy and droopy, we had opted to wait until she was about to go to bed.  It got to be about 11:00pm and she just sort of told me she couldn't breathe deeply, or keep her eyes open, and she sort of folded back onto the bed and was super slow to respond.  In conjunction with that, the EtCO2 "Bleeping Betty" was showing numbers above 50 for her CO2 and her breathes were shallow, rushed and sometimes depressed.  I called the nurse who didnt seem to know what to do.  She tried to call both the surgeon, his PA and the pain management doctore, but no one answered.  Once Lena indicated she was having trouble taking deep breaths, the nurse called the Mobile Emergency Team.  Within minutes Lena's room was FULL of medical personnell, the Respiratory Therapist, etc.

They drew blood from her wrist (she moaned alot, ouch!)  And then from her arm.  Pulse-Ox reading showed she was getting 100% Oxygenation - but she could barely respond.  When she did, she was saying it hurt alot to breathe. There were maybe 8 medical personell all looking at each other trying to decide what to do (she obviously wasn't gonna need "ER" attention.)  Finally, it was decided that the PCA Dilaudid was just delivering TOO MUCH medication for her little body...that she was too drugged and the result was a "respiratory depression."  

Problem was:  She was due SOME KIND of pain med at midnight - and since she'd  been on the Dilaudid every 15 minutes since recovery, plus Toradol because the Dilaudid wasn't quite covering all the pain....the nurse decided she'd better quit both UNTIL ONE OF THE DRs COULD CONTACT HER.   So by 12:30am Milena had NO pain meds in her at all.  They are drawing blood etc and she is clearly in pain.  Mama bear was starting to emerge.  Finally they gave her the Toradol and then some Tylenol.  Her #2 IV in her right hand had some problem after they dosed the Toradol and she was like, "HURTS".  SO the nurse removed it immediately.  She never really fell back to sleep and was basically at a "9" the rest of the night.  It sucked big time.  What had started as a really positive day, ended up terrible. 

We have been learning that this journey is really hour to hour.  Lots of ups and ups, then down and a step back, then a step forward.....

Surgery Day, part 2 - Finally in the room and the first night....

The view from Lena's 10th floor room

First look at the incision

2nd and CLOSER look at the incision

Trying to eat ice cream....
(explanation of nose/mouth bubble below..)

Finally some shut eye,
explanation of arm "floatie" below....

8 May 2019 - Surgery Day, part 2 -

• Finally made it to tenth floor
• The first attempts at eating
• Bleeping Betty and the arm floatie
• Sweet rest and feeling antsy

Jen's ELABORATION on the series of post op events.....

Finally made it to tenth floor - We finally got a transport to her room.  They ordered a full on hospital bed for me to sleep on..  The hospital is older and so the bathroom is slightly larger than an airplane bathroom!  The tile and style remind me of elementary school so it's gotta be late 60s or 70s era.  She has a huge window that overlooks the surrounding area....close up the mid to late 19th and early 20th century victorian style 3 story houses look pretty run down...but nonetheless quaint...but the 10 floor ariel view is stunning.  Looks like a painting or early american history book.  The miniblinds made it super hard to capture the feel of it, but it's pretty and quaint.

Once we got to the doorway of her room, her first nurse (who seemed a bit frazzled and rushed), stopped us from going in and insisted that "the hospital likes to have the post surgery recovery patients walk to the bed from the doorway."  Um.  THAT wasn't happening.  She could barely make a sentence and she was still in pain.  This assertion cause the nurse to do what I call, "the duck squabble".  That is where the miffed individual mutters under their breath their disdain for whatever you aren't complying with and they sound a bit like how ducks sound when you get too close to them.  You know what I mean, right?  "Well.  They make such a big deal abou having them WALK but whatever.  You know I AM just trying to comply with my training ....squabble/SQUABBLE/SqqquuuaaaaBLE."  

We rolled on in and transport and frazzled nurse (By now it was becoming clear that it was a BUSY night at St. V's Hosptial....) proceeded to work on lifting Milena from stretcher to bed.  (Squabble squabble squabble)... I do transferring in my job so I helped with her feet.  They didn't count to 3, which is like the standard in transferring so that bugged me.  But we got her on the bed (she looked like a weeble wobble when we moved her it was funny) but she sunk in and was good soon.

Then fnally peeled back the gown and got a good look at her scar!  It was much shorter than expected (some go all the way into breastbone area.  It was clean, no drain, and no oozing.   It reallhy looks great.  It's glued wih no dressing to what you see it what you get.  I think Lena is kinda proud of her battle wound...

The first attempts at eating,  She ordered a chef salad for her first meal.  I ran to the car to get our overnight bags, and in the process also ran to the store for a few essentials (ICE CREAM.  Its 

essential.)  She'd eaten some of the salad by the time i got back.  (Even in recovery she had said, "I am in pain BUT no MALS pain!')  She even had some of the chocolate chip cookie dough ice cream before bed that night.

Oh I almost forgot.  The hospital SHUTS DOWN for visitors at 8pm SHARP and security was tighter than the airport so when I got back from my jaunt to CVS and Whole Foods (ima Yerba Mate junkie and I got the yummiest Italian Wedding Soup that I was "gonna share" but oops she'd already eaten sooooo mmmmmm)...But crackin back into the St. Vincent Medical Center safe was quite the interesting adventure.  Luckily I had been photographed prior to leaving and was "in the system"... but I'll explain how I figured out WHY the security is so tight in another post....

Bleeping Betty and the arm floatie- You probably see extra "equipment" on Milena you may have questions about.  First is the nasal cannula that looks like it has a clear circular peice over her lips.  It IS a clear puff of plastic!  The unit is attached to a machine; it measures EtCO2 or "tidal output".  Becuase Milena is on a "PCA" pain pump, delivering a heavy narcotic (Dilaudid) ever 15 minutes, the have to measure her respiratory (or CO2 output) function as a safety precaution.  If her level gets abobe a "50" and if she breathes in less than 7 times a minute - an alarm goes off to alert for "respiratory depression'.  Thus the not-so-affectionate term:  Bleeping Betty (breathes can get lower than 7/min ALOT when you are drugged up and reclining most of the evening....Lena's bleeped quite a bit whenever she was sleeping...argh.  But I'd just have to "remind" her to breathe and she was ok.

The blue "arm floatie" was put on about an hour after she got to her room.  Her main IV is in the crook of her left arm, and so whenever she bends that arm, it occludes (the flow is cut off like a bent garden hose...) and yet ANOTHER alarm goes off.  Since she was pretty sleepy and drugged up - she was absentmindedly bending that arm alot.  The blue, puff floatie just was a reminder to keep that arm straight.

Sweet rest and feeling antsy- With almost all meds going through the IV..and no real reason to stand until the next day (catheter and IV meds...) she dozed off by 8:30 or 9:00pm.  Her super soft blankie and "Hsu-nicorn" close by.  I settled into my own hospital bed until.....

"......hey mom, I'm up.  I'm antsy...."  3am.  So coloring, hanging out, etc.

Surgery Day, part 1 - MALS Celiac Ganglion Dissection

Arriving at St. Vincents

Prepping for surgery...
yep we are always THAT pale and tired

Getting the IV put in (she likes to watch...
I don't understand how she can do it)

8 May 2019 - Surgery Day 

•  Report to St Vincents by 11:00am
• Surgery at 1:00pm (actually took her back about 1:23pm)
• Meeting with Dr. Hsu after surgery
• Post Op waiting and pain pump love

"Will you hold my hand?"

Post op - And the beloved "pain pump"

A message for Hurley..
.she kept asking how he was doing....

Waiting, waiting, waiting in recovery...

9 May 2019 - Jen's DETAILS.....

Report to St Vincents by 11:00am - I actually woke up early again....The RMH is amazing...but we only have two towels and I wanted to grab a couple more from the store.  I snuck out while Lena was still sleeping and made my way to make my lemon/apple cider vinegar/hot water down in the totally stocked commercial grade kitchen.  I then decided that to avoid the saltine stealing debaucle of the day prior...I probably should find myself some breakfast.  Since Lena was fasting until surgery (and she can't really eat anyway ) I decided a smoothie or acai bowl with protien would be great.  Consulted Googlemaps, found a place that looked good, and made my way to "Broadway St at Yale". 

The RMH is located about a 1/2 a mile from Yale University in New Haven- and I unknowingly arrived to park in a super quaint area that clearly has alot of Yale student traffic (lotsa backpacks wandering the same direction.)  Parked too far down the street and found myself on a lovely morning walk past the Yale Bookstore, a cool church, etc.  Took some pics, I'll put them at the end of the post.  Proceeded to the Tropical Smoothie place and ordered a flatbread/peanut butter/granola/banana/and honey sandwich and a blueberry power smoothie.  Um.  The flatbread was something that brought me alot of joy.  Yum yum.  Definitely heavy enough to get me through the morning.  Stopped at Target on my way back and grabbed the towels and some snacks for the day.

Got back, Lena was all ready.  I was amazed at how relaxed we both felt about the entire process and morning.  Actually left on time, (if you know me, you know that rarely happens...)  We made it to the hospital with 5 mins to spare.

Prep and Surgery at 1:00pm p(actually took her back about 1:23pm) - They remembered "the bracelet" this time.  We were ushered up to the 3rd floor and a few minutes later they took Lena back to prep her.  They said it would be about 25 to 30 minutes so I ran out to the car to grab my water bottle.  In the process, ran into the other mom of Lena's "surgery buddy" Jessica....who was at that time already in surgery a good 45 minutes.  Carol and I had a good discussion regarding the pre-op, getting to know each other a bit, and after a few minutes made our way back to the surgery waiting room.  By that time they were ready for me to head back to be with Milena.

She was all gowned up and had her "warm blanket" and "grippy socks" on.  She looked relaxed, but tired, pale, and ready to "get started".  Dr. Hsu stopped in, then the nurse anesthestist, then two nurses that would be in surgery with her.  Another nurse started her IV (left arm, in the underside of elbow...) and we waited just  bit longer before the nurse anesthetist returned with "the cocktail".  And off they went.

I wandered out to the room, again, kinda surprised that I didn't feel more anxiety about the entire process.  I felt like she was in great hands.  I spent the next hour or so talking with Carol and Jessica's dad...(Dr. Hsu had finished with Jessica prior to coming in to Lena's pre surgery meeting...so they were just waiting for her to wake up from recovery....)  We had been warned that in the case of THIS surgery...that they do not rush waking up the patients.  If vitals and breathing are good, they just let them rest for a while since it is so invasive and traumatic on the body.  Dr. Hsu came out about 3:30 and summoned Jessica's parents in to see her.  Then he returned to talk with me.

Mom meeting with Dr. Hsu afterwards - Here was the gyst of the post-op conversation with Dr. Hsu:

"Everything went well.  I removed the ligament bands. It was interesting: She has the fragile, delicate arteries of a 14 year old, but the nerves of a 90 year old.  Her anatomy is a little bit different.  It shouldn't cause her any problems later on, but she has an extra branch off of her celiac artery.  A normal anatomy has 3 branches," (he then explained which direction each branch goes and what they lead to....I got lost there...), "But Milena has a FOURTH branch that leads to the liver...I chose not to dissect it because there was no reason to mess with it...but the surgery took a little longer since I had to go under it like a bridge...."

Dr. Hsu then literally spent like another 25 minutes in casual conversation with me, answering all and any questions I had...which were mostly about how the heck do we spread the word and get more recognition for his approach to Neurogenic MALS???  I'll save that discussion for another post devoted to MALS awareness....BUT this surgeon is a class act, easy (for me) to talk to, honest and confident provider.  So, so, so grateful.

Post op - I wandered down to get a bite to eat after talking with Dr. Hsu...as I had been warned that it could take 2 to 3 hours for her to wake up.  I had some mediocre grilled squash and herbed sole from the Cafe...Talked with Annika briefly...

OH YEAH - ONE HUGE MOM FAIL....

Backtrack to Lena going into surgery.  I carefully created a group text so that our closest family members could have up to the minute info on her progress.  From Surgery prep on....I had been sending pictures, updating and communicating with the extended family.  I knew Erick, Ture and Annika were all busy and so it didn't surprise me that they hadn't responded with questions or comments.  Until, I noticed Annika sent a text that read, "What time is Lena's surgery?"  

Yeeeeaaaahh.  I actually didn't put Erick OR Lena's actual siblings on the group text.   They had no clue how she was doing.  MANY apologies and "copy and paste" texts later, they were up to date. I'm so much less than perfect.  Intensely flawed actually.  Sheesh. 

Ok, now the REAL Milena focused post op info: When I got back from eating, I didn't even have time to sit...they took me back, and she was calling for me and saying, "Hurts.  Hurts."  The nurse (aid) who will from now on be referred to as THE LPN THAT I NEVER SAW PUT ON A PAIR OF GLOVES or perhaps "gloveless  nurses aid" took her own sweet time hooking up the pain pump.  She said that we shouldn't try to talk to her because she didn't want to get distracted and do it wrong ?!?  Do these sorts of things ONLY happen to us?  Once she was finished she had to call for a "real" nurse to check her work - and she hollered from the edge of the curtain like she was maybe calling for "CLEAN UP ON AISLE 6!!"  I didn't blame the other nurses for ignoring her.   I then got a thorough training in how Lena would HAVE to push the pain pump HERSELF and that I could remind her but that I couldn't push it FOR her.  She made a big deal that my pushing "wouldn't work".  I totatly mentally questioned the validity of this.  Really?  (Like was there some James Bond technologly that recognized Lena's fingerprints but would reject mine? I had a feeling gloveless nurses aid was making this up....)  Made sense but as in many situations I find myself in...I was thinking, 'people actually DO that?'   I totally wanted Milena to control her own pain releif.  

So the pain pump was a little hand held device with a green "firefly" light on the top.  When it light up, the pain is available and the individual can "push" the medication (in this case Dilaudid).  Man Lena wasted NO TIME pushing that thing once it got in her hand.  I mean it had taken almost 25 minutes before they even handed her the pump.  The medication was available every 15 mins.  Within two pushes, Lena had figured out that the light synced up with her BP cuff measuring so that was her indicator when it was ready to push.  

By now it was well past 5pm...and although Milena had already been assigned a room, and it seemed she was stable enough to be move (gloveless nurse aid said so) - BUT the little hospital was HOPPIN with activity and transport wasn't showing up.  We waited about an hour and finally made it up to Room 1043 by around 6:45pm.  

Earlier in the day pics, all from Broadway Street (I think it's called "The Shops at Yale on Broadway"...)

Pre-op appointment day, meeting other MALS patients, and self care

Pre Op appt at St Vincent's Medical Center
(Lena's representing her High School with her "Letter Cardi")

Self care is important = French pedis for all

Ahhhh.  But this made us too late to visit the animal shelter :-/

HIGHLIGHT was meeting "Abe" who was just 4 days "post op"

Not gratuitous.  No "girls gone wild" here. 
Just a simple "pre totally HUGE scar" pose.
104 pounds (she lost 17 pounds in 2 months)

Bonding with "Stella" the Unicorn (pillow)

7 May 2019 - Tuesday

• I wake up and forage for food Lena can eat
• Pre Op appointment at St Vincent's Medical Center (Bridgeport, CT), meeting Dr. Tamasdin, and feeling "prepared"
• Starving 
• Pedicures
• A restful night at the Ronald McDonald House

Jen's version of 7 May 2019

• Foraging:  Soooo pretty soon into the trip I discovered that the three things Lena CAN eat, that she had left out on the counter for me to "put in my bag"...I didn't grab off the counter and put in my bag.  Since she can't drink water or really eat regular food - I needed to strike out early to find a grocery store.  Plus there were the (less important but nonetheless needed) vanity equipment pour moi (hair spray, root lifter, other hair stuff, you think this just "happens" without equipment?)  So I find the local "Stop and Shop" and find a box of mini saltines, Life Cereal, some bottled water and my hair stuff.  Make my way back in time to get ready and leave for the pre op appt.
• St Vincent's Medical Center - About a 30 minuted drive from New Haven, St Vincent's is an older, smallish hospital building.  Bridgeport is not quite as clean looking at New Haven (the RMH is just hop, skip and a jump from YALE University...)  I drive around the St Vincent campus exactly 3 times (we were told to "valet" park, yet no valet in said signed area....)  Finally I drop Lena off, and park in the structure.  By the time I make it in, Lena's already been checked in an sent to the "pre testing area".  I arrive as the pre testing lady notices the registration lady did not put "the bracelet" on Milena.  Alas we are caught in a tidal wave of "where IS the bracelet?" and we usher ourselves back to registration where an apologetic lady complies and takes full responsibility for the mistake.  Soon Lena is filling out the paperwork.  She's ahem, an ADULT and so she needs NO help from me.  I make her show the paperwork to me.  Yeah, she got it all, heh heh.  Lena gets two vials blood drawn (amazingly quick albeit slow flowing from my dehydrated girl..) with a very sassy yet kind nurse who "was supposed to be on her break".  We then talk to Anesthesia nurse (no big concerns), and head upstairs to visit with the Pain Management Doctor.  
• On the way upstairs, we stop to meet Lena's "Surgery buddy" whom we had become acquainted with via our MALS closed FB group.  Don't try to join.  This is a "SPECIAL" club only for those lucky enough to need this super invasive surgery....  But we met Jessica G. and her mom Carol G. (names initialed so they don't sue me for letting the world know I know them...)  The mom gives me a SUPER big hug....which I need since she is the ONLY OTHER PERSON I have ever met who has a child with this issue.  Well, as of then.  Jessica is beautiful and they are on their way to another appointment.  We agree to touch base in the morning as Jessica's surgery is right before Milena's.  
• Although we both listened to the directions, Lena and I walk up and down the short hall like three times looking for the right area....A short wait later we meet the LOVELY Dr. Tamasdin.  She goes over all of the pain management information and answers all of our questions.  We were done about 30 minutes later.  My thoughts as we left the hospital were literally, "I could NOT feel more comfortable about this situation."  I think we both felt ready. 
• The starving journey to Carol's Nails - Welp, since super smart me had emptied all the trip snacks into the RMH room, and only grabbed Lena's box of mini saltines...I realized I was really hungry.  And well, since Milena really can't ever eat, exept the saltines, she is ALWAYS really hungry.  I proceeded to steal most of her box of saltines, pretty apologetically on the way to an appointment at "Cindy's Nails".  I said things like, "You can't eat too many anyway right?"  but I think she was pretty anxious that I was gonna finish the entire box of mini saltines (they are VERY VERY cute sized mini crunches of special goodness if one does not eat crackers regularly).  For those of you who are aware of my self imposed dietary restrictions, I decided I get a "free pass" this week.  So a few crackers, breads, and sweets are gonna happen.  We make it to Carol's Nails in East Haven, and THANK HEAVEN'S there is a Subway next to it.  I get a rotisserie chicken Caesar on spinach wrap (cause I needs my protein), Lena finds a Gatorade...  Lena sinks into the Pedi chair, and the above photo is her happy, but exhausted and hungry face.  She got a decent pedicure, but her man manicurist was decidedly irritable and spent like half the time on her as my little lady did on my feet!  We headed back to the RMH ready to rest up for the next day.
• Back to the RMH and we make contact with a family staying there who have a son who JUST was discharged from the hospital.  (Dr. Hsu operated in two locations, so "Abe" had his surgery in Stamford.)  Meeting Kendra (his mom) was like honey for my SOUL.  Finally people who "get" our medical mystery tour.   (Kendra and Abe please tell me if you don't want info or pic on this page..)  Abe showed us his scar, and after hanging out and laughing with them for an hour I felt so, so comfortable about what we were about to do the next day!  Off to another good night of sleep....

On our way to Connecticut, the Ronald McDonald House and the "Hsu-nicorn"

Entrance to Ronald Mc Donald House of Connecticut

I like how the mom is holding up
the entire building for her family....

Just a wonderfully calming place to sit and relax

Sun room down the hall from our room

Better than any hotel bathroom for sure...

There were welcome baskets for both myself and Milena!! 
Provided by previous MALS' patient's families. 

Hi there,
Ok I'm finally "starting" this blog, info page, record, whatever the day after Lena's surgery.
But better late than never.   This is 100% written and posted by Jennifer - with Lena's permission. 

I'm gonna do this in two parts:  the "I just want the bullet point of info" portion; AND the "Jennifer style of way too much info" portion.  That way you can choose to skim or get completely involved in my madness.

For those of you that don't know our MALS and multi-systemic chronic illness story - I'll do a "catch up" post or bio in a couple of days because, um, we are a LITTLE overwhelmed and busy right now.  I'm basically gonna catch up with the day we left:

6 May 2019 - Monday

• Traveled from Dallas, TX to Laguardia, NYC, NY
• Arrived and drove a rental car to New Haven, CT
• Checked into the Ronald McDonald House of Connecticut
• Slept like babies

Ok that was the "quick info".  If you don't like the wordy parts then LEAVE NOW.  Seriously.  GO.  

JEN'S version of 6 May 2019 - Monday

Travel:  Our plane left at 5:00pm.  Because I am ME, I had 7 hundred billion things to do before we left.  I seriously fit in: bathing the dog, stopping by my work to say good by to the residents (I work in an assisted living facility), a trip to the grocery store, finishing packing, etc, etc before we had to leave for the airport at 1:45pm.  Lena was equally busy as she had to stop by the High School and take 2 finals (she was leaving the week befor her Senior exams).  Somehow we did it.  Pretty sure I left a wet load of laundry in the washer.  Whatever; we made it on time.

Got to the airport.  Felt EXTREMELY grateful for Uncle Steve Troxel, who coughed up a multitude of frequent flier miles so our tickets were all free.  THANK YOU.  Of course I packed too much.  Milena was pushed through the airport via wheelchair by Delta staff because walking exhausts her.  Plus carry ons.  Gate was remarkably close to security.  Made it with plenty of time to spare.  I parked Lena and our carry ons and went off to forage for our drink and food.  Lena can't tolerate water or really any food besides mash potatoes, life cereal, and saltines.  I find blue and orange powerade (it will do), and beg 3 packaged of saltines from TGI Fridays.  

We preboard.  Get Lena set up.  She never really has to visit the restroom, cause she is already so dehydrated.  I'm another story, I've already gone twice (I call it "mom bladder").  Flight is unremarkable.  We fly into LaGuardia in NYC because after 3 years of traveling with my daughter's health issues, I have learned that no plane change equals less travel time equals less trauma since they really suffer with pain, nausea, etc when they travel. 

Side note:  Since I didn't finish my "POTUS Proposal" for my University Government class, I had to work on that during our entire 2 3/4 hour flight.  I'm quite up to speed on "US Foreign Policy regarding  the spread of disease in Nigeria" or rather, how to invent memo on that subject when YOU REALLY HAVE OTHER THINGS ON YOUR MIND......   Regardless it was quite interesting.  I'm pretty sure compiling facts and figures on the how 70% of new AIDS/HIV cases originated in Nigeria  in 2012 and info the more recent Ebola, while traveling isn't ideal.  But it was due via online turn in by midnight CST that night sooooo.  (Turned it in at 11:36 EST in CT...got 170 out of 200.  I'll take it.)

• Arrival at LaGuardia and journey to the Budget Rental Car

So we are always the last ones off the plane.  Easier to get to the wheelchair that way.  Mohammed the Delta wheelchair dude welcomes us and we immediately ask him to babysit our drinks while we use the ladies room.  We mosey on over to the baggage area...ours are the last ones on the carousel. It's about 9:45pm.  We roll on out to the "Shuttle to the shuttle to the rental car place".  Mohammed helps us get on the first shuttle, but then we lose him and the wheelchair.  Everyone clears off the seats when we get on so Lena has a place to sit (her legs aren't working too well and her gait looks a little like gumby on a stiff day.)  Lena and I sink into the shuttle seat, kinda snuggling  because she is T-I-R-E-D.  We are having some goofy discussion and I can see there is a guy maybe in his late 30s in a rocker t shirt and bandana with a back pack kinda glancing at us.  We get to the first stop and it's like you are supposed to walk across the street and roundabout to the other side.  We are clearly gonna need help.  Rock T shirt guy offers to run across the street, first shuttle driver says he bets other shuttle driver would agree to drive around and pick our disabled buns up on this side of the street.  Rock T shirt guys says, "I'm glad to help!"  And as he starts off he turns around, leans in and says, "By the way... you both are really beautiful."  I know it sounds creepity....but it was genuine and sweet.  He talked the Budget Shuttle guy into driving around for us.  Rock T shirt guy went off on another shuttle.  (Lena's comment:  I think he was gay.  Jen's comment:  then  that means even more because then he has better style...no politically incorrect stereotyping intended with malice.)

A rather crazy shuttle ride later, (lots of construction at LGA)...and an interesting converstation with two guys who live in Queens, who insisted "we are locals", several times...but then talked about how they grew up in Boston and we watched them pick up a rental car right before us.....?  Whatever.  Budget did us a solid with a nice Kia Sorento and and hour and 20 minutes later we were in New Haven.  Lots of Taylor Swift was enjoyed along the way.

• Ronald McDonald House in New Haven, CT

It was late.  We got there.  Right off the bat AMAZING.  Since it was almost midnight, we just got our keys, and got to our room, and readied for bed.  But worth mentioning are the two baskets we found waiting for us on the beds.  One for me, with a "Linus blanket" (pictures to come) and a personal note from a parent of a previous MALS surgery patient...with tips and suggestions.  The basket had some other neat items for our stay.   Lena's basket had a ton of fun stuff, but the best was the "Unicorn" super soft pillow and blanket (see picture).  Her surgeon is Dr. Richard Hsu, of The Vascular Experts, Danbury, CT.  His patients are affectionately known as "Hsu-nicorns".  

More about the Ronald McDonald House later.  We were off to dream land (well, it was more like stress-out-about-alot-of-pre-surgery-details-land but again, this is our lives now, so whatever.)