Post Op Day 14 - Homecoming!

....Not sure but looks like a hamburger....

....whatever it is, she's enjoying it...

Meanwhile our church Young Women's leader had decorated our door!

....and left a Graduation giv

Lena's dog Leo was SO SERIOUS ... it had been WAY too long since he'd seen her!

....her cap and gown and cords we

Theatre medal...from the banquet she missed...

The Theatre Officers, "leaving a space for Milena" at the banquet....

Home AT LAST

Its really YOU!!

14th Day Post Op - 22 May 2019 - HOMECOMING!!

• Erick and Lena drive from the Ronald McDonald House in New Haven, CT to Laguardia Airport in New York....and obviously got hamburgers on the way.
• Lena's dog Leo waits impatiently.
• Mom attends Theatre Banquet - and cries alot.
• Mom gets EVERYTHING READY.
• Door decorations
• Happy reunions

Jen's wordy version of the day's events (and more of course)....

Erick and Lena drive from the Ronald McDonald House in New Haven, CT to Laguardia Airport in New York....and obviously got hamburgers on the way.-

Erick and Lena had about an hour and a half drive from the RMH to the airport in NYC.  Origionally I was super worried about this...but Lena had been doing so well in the car (this was NOT the case prior to her surgery)... that I was less concerned about her discomfort during the car ride.  They made the trip without a hitch...and I see they had some adequate sustenance along the way. 

Lena's dog Leo waits impatiently.  Lena (we) have an "emotional support" dog (although we have absolutely failed at training and socializing him enough to go the doctor with her or really anywhere in public at this point).  Leo is about 40 lbs, and he is classic MUTT (St. Bernard/Chow/Rottweiler/American South Stratfordshire Terrier/ Pitt Bull/Shih Tzu mix)  But he's about 18 months old now and getting out of the "puppy" stage.  He's a lover and he was VERY confused at the events of the last few weeks.  Why isn't "mom" here?  Why can I HEAR her in the phone but I can't SMELL her in the phone.  Ok.  I'll just abuse the cat in her absence.....

Mom attends Theatre Banquet - and cries alot.  Lena's Theatre Banquet actually happened over the previous week end, but I forgot to mention it.  I went in her place...she has been very active in the  Celina Theatre department for the last 3 years that we have lived here.  She's worked hard to earn parts in productions, she has served as an officer for two of those years, she's managed parts in plays in spite of her growing list of diagnosed conditions and issues/declining health.  Mrs.Cindy Baker, the Theatre teacher has been an amazing mentor and support for Milena; the other Theatre students have been best friends and her family during her challenges.

Lena missed EVERY one of her SENIOR YEAR ACTIVITIES due to her health issues and the timing of her surgery in Connecticut.  Don't get me wrong...the timing of her surgery was a MIRACLE and in the grand scheme of things it has all worked out for the best...but that doesn't mean that it was ANY easier for Milena to miss these events.  And as she was in CT healing, she was seeing posts and watching all her peers go to: the Scholarship night; the Senior trip to Six Flags; the Baccalaureate; the Senior class walk through the elementary school (where Hurley would've seen her and said, "THATS my sister!"); and this Theatre Banquet.  The reality of missing those events due to things that she really had no control over was hard and sad for Milena.

In addition, it would be good to point out how precarious the last 4 1/2 months had been for Lena...not only healthwise, with her ability to eat and drink diminishing, losing roughly 12% of her body weight in a short period of time, and the constant pain she was dealing with.  The pain that MALS patients deal with has been compared to the pain that end of life patients with Pancreatic Cancer.  In addition, the genetic condition that Milena and her older sister Annika have been diagnosed with, and have suffered with since birth (although we only figured out the diagnoses within the last 2 years....) has been compared to the pain that terminal cancer patients suffer with.  The difference is, that may daughter's "look" normal and have always had pain.  They have ALWAYS had pain, and so they are masters at functioning in spite of the pain.  The story of their journey is for another blog...but when you have known pain all of your life, that is your normal.  It seems much of the time, that my daughters are penalized medically (and at times overlooked, judged or questioned socially) because they are able to "deal with" their pain in a quiet way.

In any case, basically from February of this year on, we had no idea whether or not Lena would have the energy to finish her classes (her metabolic function has been recorded at 70% of a healthy female her age... and this is WITH medication and therapies), or if we would be able to work it out with the school for her to graduate.  It was so awful that she had been somehow managing all of her illnesses (EDS, Dysautonomia, POTS, MALS, Gastroparesis, Nutcracker Syndrome, Mays Thurner Syndrome, Scoliosis, and a variety of comorbidities that go along with these chronic conditions...) and she was SO close, just so close.   Even the scheduling of the surgery left only roughly 40 hours from the time she would fly into the Dallas, TX area to actually participate in the graduation ceremony. 

Mom gets EVERYTHING READY.  I washed her sheets.  I did my best to dewrinkle her graduation gown.  I hung her gown, cords, cap, and medal in the closet so she could "find" it all ready (and to keep it safe from Leo).  I laid out her yearbook, that her other "school" family - the SWAT (Students Who Advocate Technology and her amazing mentor/teacher Mrs. Tisha Poncio) had lovingly signed since she missed any opportunities to have her classmates sign her yearbook.  She had a few graduation cards waiting for her too.  I worried some about her walking through the airport (I had arranged a wheelchair but many times if "mom" isn't there....well she IS an adult....) 

Door decorations Lena has some amazing church support.  Her Young Women's Leader's have been checking in on her regularly...as have her Seminary teacher (who has cheered her on for the last 2 years as Lena has managed online seminary.)  Sis Smith showed up and decorated the front door and dropped off a cutie grad gift.  I was SO thankful.

Airport pick up, singing songs, and mom gets quiet.  The first thing I noticed when I pulled up to the curbside pick up is that MILENA IS WEARING HER BACKPACK.  (Don't freak out.  Don't freak out.)  She opens the passenger door and gives me a gentle arm hug.  Me being me, I get the "Oh. You  are carrying your backpack...." out before the hug even happens.  She shuts it down with a sigh and a "Well dad was carrying 'everything' so I....."  But again, me being me I'm already VERY WORRIED as I take the backpack from her.  Must have been at least 25 pounds.  I shake it off for the moment as Erick says his "hello's" and hugs for Hurley in the back seat.  Hurley INSISTED on Taco Bell on the way home - and Lena muttered "I cannot believe I am actually eating this...."  Not in a bad way...

Happy reunions! Got Lena coming in the front door...and BOY WAS LEO HAPPY TO SEE HER!!!  The feelings were absolutely mutual and as she wandered into her bedroom to take in all the comforts of  home and sights of her gifts and graduation paraphernalia...I ahem, left for 20 minutes because mom needed a Sonic Blast to take out her stress via a sweet treat.  When I got back...I think the long day (read: WEEKS) caught up with her.  Although she was worn out physically and sore, she had taken her meds and was preparing for bed (it was almost 9:30pm by now)... But she also got very tearful as the power of all her graduation items and what she felt "robbed off" due to the surgery set in.  Lena, Annika, and myself (and I'm sure the boys in our family, although I am not as good as understanding their "feelings") have had to switch alot of "plans" these last few years.  While we always seem to "make it there" and have amazing successes along the way...What many do not see are the quiet moments that the loss of the idea of "how it was going to be" or "supposed to be" sets in.  We have alot of that around here.  I am pretty sure everyone can identify with this in some way.  But my daughters seem to have to deal with this concept daily or even hourly as their bodies just can not perform or function.  The future for Lena or Annika feels pretty much like a crapshoot at this point...they have plans...but as we learned this year - any one of the 8+ conditions each daughter has can dip into "symptomatic" at any time...really.  It's like standing in the center of a wobbly teeter totter.  I try not to spend too much time in worry mode...but more often than not in the last 3 years, we've had constant, extreme and complex medical crisis to piece to together....without much break to catch our breath...

So it was a tearful end of the night.  I'm certain I didn't help with my tight lipped concern regarding the choice she made NOT to use the wheelchair.  But really, that is my problem.  Milena has made so many amazing decisions and choices along this road and I have committed to support her.  But moms have feelings and grieve too.  Off to bed and GRADUATION PREPARATIONS THE NEXT DAY....

Days 12 and 13 Post Op - Day Trip to the Aquarium and Post Op Follow Up in Danbury, CT

SUBWAY Sandwich....with dad

5/20 Trip to Aquarium with same day surgery buddy!

 

#248 and #249.....

Milena was the 249th Neurogenic MALS surgery patient...

....and only one of 7 from the "Dallas" area.....

Milena with her surgeon, Dr. Richard Hsu
of The Vasular Experts

May 20th and 21st - Post Op Days 12 and 13

• Trip to the Norwalk Aqarium with surgery buddy
• Post Op appointment in Danbury, CT with Dr. Hsu

Jen's comments (I was back in Texas being jealous of all the fun they were having....) 

Trip to the Norwalk Aqarium with surgery buddy - Lena and Jessica were finally awake and feeling good on the SAME day and they met up at an Aquarium that had so many cool things.  

Post Op appointment in Danbury, CT with Dr. Hsu - A requirement of the surgery in Connecticut...was that Milena had to stay in the area for about 2 weeks.  Post op day finally arrived, and Erick drove Milena the 45 minutes from the Ronald McDonald House.  I had sent a (Short) list of questions...and demanded that Milena get "THE" pictures of the map, her surgery #249 on the map, and with Dr. Hsu.  Dr. Hsu examined her, and said that since her incision glue had already fallen off, that she was "ahead of the game" regarding healing...and said she didnt' have any restrictions.  She could start swimming, core exercises, etc.  Amazing.

One thing we didn't realize, until we basically were AT the pre op appointment - was that the less time the MALS sufferer spends in the malnutrition/dehydration zone...the shorter and easier the recovery.  There are patients who spend years trying to just figure out what they have, then spend more time trying to figure out the treatment, then some even have surgery with another Dr., only to end up finding Dr. Hsu and needing another operation using Dr. Hsu's approach.  Dr. Hsu is pretty much the ONLY surgeon that does the Neurogenic MALs/Celiac Ganglion Dissection.  Many patients have been on feeding tubes for a long time before finally having the surgery.  In fact, we also discovered while Milena was in the hospital..that Dr. Hsu's surgery schedule is now booked until MARCH 2020.  If Lena hadn't been able to get on the schedule when she did, she likely would have been waiting months and months - meaning she too would have needed a feeding tube, etc.

But now that we are past the surgery, it seems that the information regarding the fact that Lena was able to get in within a few months of her decline, has proven true!  At this point, the scar looked amazing, She was feeling good, walking and moving so well, etc, etc.

- 

Days 7 through 11 Post Op - Eating, walking, evacuating, resting, REPEAT

Yale's Peabody Museum 5/15/19

A drive on days we don't feel like walking...

The Famous Pepe's Pizza

But loooong walking on days we DO feel like walking!

Always resting in between outings!

MORE food (handmade by dad...)

Post Op days 7 through 11 - May 15 through 19

• Dad's here and the fun part begins!
• Milk of Magnesia, not fun.
• Yale's Peabody Museum
• Pepe's Pizza
• Long drives
• Expertly made breakfasts
• Dinner with Basilius Family

Jen's notes from AFAR....

Dad's here and the fun part begins!  Erick arrived on 5/14 late in the day and "passed the Milena baton" to him.

Milk of Magnesia, not fun.  On the "ever watching the bowels" note, there was a no movement concern; a call to the PA Tim; a confirmation that additional help like Mg Citrate or Milk of Mag was needed; Milk of Mag was procured and movement occured.  Since then all is well now that we have found the magic "pill" and there will be no more bowel reports from now on.

Yale's Peabody Museum - Erick and Lena visited the Yale Peabody Museum on 5/15...inside fun.

Pepe's Pizza - New Haven's finest Pizza, suggested by Jimbo from St. Vincents.  Lena said crust was, well a bit crusty but good.

Long drives - Rainy days and tired legs meant a couple of long drives.  Beautiful Eastern/New England scenery.  Amazing, since Milena usually gets super nauseous on drives, so a rare treat for now....hopefully from now on!

Expertly made breakfasts - The Ronald McDonald House has an AMAZING kitchen available for use.  Erick made good use of the kitchen by preparing eggs, bacon, and breakfast burritos for Lena on a couple of mornings.

Dinner with Basilius Family - Sunday night, Erick and Lena drove to New Cannan (about 45 minutes southwest of New Haven) to have dinner with the Basilius Family (our Bishop from the Celina Ward/Congregation that moved away from TX last year...)  I'm so grateful Lena can enjoy and appreciate DINNER invites again!!  

Day 6 Post Op - The trip to Target and Mom leaves.

The set up in the room at the RMH

Healing nicely, starting to scab, glue falling off

Still looking good!

I left a "few" notes before I had to leave.....

Sad I had to leave her.....

14 May 2019 - Day 6 Post Op  -

• Packing, cleaning
• Trip to Target and "running out of gas"
• Dad flies/drives in
• Mom drives out!

Jen's info:

Packing, cleaning - This was the night I needed to drive to NY and stay in a hotel closer to the airport...so I finished my packing and laundry to leave the room tidy and laundry done for Erick to arrive.  I MAY have left a note or two for them with the meds.....(see picture above)...

Trip to Target and "running out of gas" - So Lena actually had a pretty good night of sleep, and since Erick was on his way into Connecticut from Texas...we opted to go to THE store (Target) for some supplies.  Erick and Lena would be hanging out at the RMH for the next week.  We had a food list and a few needed supplements and medical supplies.  I was surprised when Lena wanted to come.  I had run to Target the day of her surgery to pick up some extra towels.... and I figured I'd just head back to that location.

Except I didn't.  I walked down to the lot where the rental car was parked...and drove the block and a half back to the RMH to pick up Lena.  I punched "Target" into my googlemaps and off we went.  The Target was really nice, I was telling Lena how it was "right next to a Panera..." but then I realized we were headed in the "other" direction.  Sooo the Target we ended up at was an older location, on what I swear was the oldest road in the United States with THE most pot holes ever.  So. Many. Bumps.  Lena was only wincing slightly but, I swear when you are chauffeuring your child that JUST had her abdomen cut open less than a week earlier - YOU NOTICE THE BUMPS.  Still, we made it in one piece and went on in.  I mean, it wasn't as bad as that time I "accidentally" drove into Manhattan!  But that is another story for another blog....

We found most of what we needed, and Lena did well, but it was interesting to watch her hunch over just a little more and then a little more the longer we were there.  On the way home Lena got VERY nauseous (I'm sure it was the road and NOT my driving...)  She spent the next couple hours in bed.

Final visit with #247 - Yeah, You know who you are.  Dr. Hsu surgery patient #247 and his mom and Lena and I had one more fun talk/laugh/commiserating session before I peeled out of there.  It sure was nice to meet them.  They are from Florida and I'm sure they will never know how at ease they made us feel and what a comfort it was to know there was a family and patient close by going through some of the same experience

Dad flies/drives in - Erick flew into LaGuardia Airport without a hitch, but hit some traffic on the way to New Haven.  He arrived around 7:40pm.  

Mom drives out!  I needed to get to New Rochelle, NY to stay the night, since I needed to be at LaGuardia Airport to fly out early in the morning.  SO  a quick "here's Lena and the info" and I was off.  I was sad to go.  Not too worried, but just sad to leave without Lena.  I remember thinking that the only thing worse was when I had to leave her at the hospital when she was born premature, at 34 weeks.  I don't care that she is 18 years now, she's my baby.

Mom's last meal in honor of "Lena being able to eat...." It was a bit of a rainy, hour long drive to New Rochelle, NY... I settled in, kinda hungry.  I mean, I hadn't ever gotten my steak while in CT and there was an Applebee's right across the street from the hotel.   Hmmmm, I needed to take a 2 hour "Food Manager Certification" quiz - and I figured I'd do MUCH better with a full tummy.  So Applebee's take out it was.  BUT 3/4 of the way through my online test the power went out at the hotel and I lost the attempt.  Argh.

Day 5 Post Op - Free at last and on to OLIVE GARDEN

Tim - Lena - Jimbo

Dr. Tamasdin - Lena

Olive Garden.  We both did partake.

13 May 2019 - Day 5 Post Op - 

• Packed by 9:00am
• Hello and Good bye Jimbo
• A wet trip to the animal shelter
• Olive Garden for dinner
• Mandy

Jennifer's version of events:

Packed by 9:00am - Lena was up and READY to GO.  She had a light breakfast (blueberries) and was changed and packed.  Dr. Hsu's Physician's Assistant, Tim was due earlier in the day and we knew the plan was to discharge her!

Hello and Good bye Jimbo - We had been told by another MALS surgery patient to watch out for Jimbo the nurse...and we hadn't seen him yet.... BUT he walked in on this day and was he great!  He caught us up on her meds, had great suggestions, and even had some fun Marvel comic/DC Superhero conversation.  He had some great suggestions for great places to eat (Pepe's Pizza and Donut Crazy in Shelton)...neither of which we were going to be able to check out BUT the other family that had asked about him had visited those places on his suggestion- and they wanted to report YUM.  Jimbo started a bag of fluids for Lena...and then Tim walked in just a little bit later.

Tim.  Um, I'm gonna admit that I have a bit-of-a mom crush!  As if the scruffy "I just got out of surgery" chin or New Zealand accent wasn't enough  - he genuinely just CARES and offers all the help and info he can for the surgery patients.   He had already called in all of Milena's meds, approved her to be discharged and with Jimbo's help we were outta there so quick.  

I also have to mention Dr. Tamasdin.  I think I spoke of her on our "Pre Op" appointment blog.  She has such a lovely manner and made us both feel so comfortable about Lena's pain management and options.  

We drove back to the Ronald McDonald House unpacked, and headed out for an adventure.

A wet trip to the animal shelter - Sooooo before the surgery I had done some "animal shelter" searching.  Lena is missing her dog "Leo" and we also miss our kitties too.  I found one closeby...but I also found a CAT CAFE.  OH man, I wanted to visit it so so badly.  But it wasn't free, and you had to make a resevation, and (other excuses...)  But it was called the "Mew Haven Cat Cafe" in New Haven, CT.  Haha!  We just opted to hit the regular animal shelter.  It was um, run by police and NOT what I expected but we did get to see some puppy dog eyes.  So many pit bulls.  It was kind of sad and smelly (and a wet walk in because it was pouring outside) but worth the stop. No cats though.

Olive Garden for dinner - then we went to (one of) Lena's favorite restaurant at her request: Olive Garden.  Salad, Breadsticks, she got Shrimp Spaghetti with Marinara, and I got Chicken Scampi.  We ATE and ate.  It felt almost "normal".  We made it back to the RMH for the night (gladly because it was STILL raining.)  Lena did ok, so far she has been able to manage her pain pretty well.  She still couldn't sleep on one side.  Nausea from time to time but walking so well and so far so good!

Mandy - After we rested for a bit we went down before the kitchen at the RMH closed.  We ran into a mom, having a snack with her daughter.  They were getting to ready to leave the next day...and they were from another part of CT.  Mandy is 19, has suffered from Epilepsy since 6 years of age...and had just completed her 4th surgery THIS year to have a pacemaker device put in her head to predict and monitor her siezures.  It was informative, inspirational, and humbling to listen to her story.  We enjoyed a long, delightful conversation.

And then it was up to our room for a wonderful night of sleep withOUT any screaming banshees or interruptions.  Bliss.

4th Day Post Op - So Fresh and So Clean, Alay Alejandro, and One More Night....

Feeling SO fresh after a shower...

Alejandro, was the BEST

Elders from the Bridgeport Ward that
came to administer the sacrament...

Feeling good that she'll be discharged TOMORROW!

Part of the Dr. Hsu MALS Surgery "club"....
Only about 250 members strong at present.....

4th Day Post Op - 12 May 2019

• MUCH quieter around here
• Awesome Alejandro
• A shower!
• Mother's Day, I was REALLY a mother....
• Doing well, but "one more day" to be sure...
• Visitors and a walk down the hall

Jen WRITES like she TALKS....

MUCH quieter around here - Well, we miraculously got some sleep by the morning time.  I rolled out of bed and immediately wandered down to the Security Station by the front door to make sure they knew about our very eventful evening.  I carefully explained that I felt our nurse wasn't really at fault...but perhaps they needed to TRANSFER the banshee and 600 lb man elsewhere OR move our room pronto.

Security was super helpful and put me in touch via phone with the nursing supervisor (it was Sunday/week end so the offices were all closed and the case manager wasn't on site.  The nurse manager promised to come by the room soon.  By the time I got back upstairs our daytime nurse had checked in.  It was ALEJANDRO....who had been there the day before.  He assured us that Banshee had left for good AND that 600 lb man (who was already asking again, "Where AM I?" was on his way into surgery and wouldn't be returning at all.  By the time the nurse manager showed up a short while later, all was quiet and peace restored.  

Awesome Alejandro.  I know I was a little critical of night nurse who was trying to manage the screamers of the 10th floor...but we really had a few amazing nurses this week.  Megan was very capable and attentive.  Alejandro was so, so awesome though.  He was this super tall, bald nurse with an accent (we were so involved with our own business the whole time we were there that I never got his "story"....)  But he was positive and very helpful and just added a great, confident spirit to our day.

A shower!  Lena had been vying for a shower the day before but since we never saw the night nurse after 7:00pm we gave up.  Alejandro unhooked her IV and wrapped up her arm and off she went.  She was walking SO well by now.  We had been prepared before surgery that she may need a walker or cane, and that maybe she wouldn't be able to life her arms over her head....but she was able to work it out and she felt 200% better after washing her hair....she even mentioned that the warm water felt good on the incision and her back.

Physical stuff:  Lena was by now, able to lay on her right side, but her back would hurt from time to time.  She wasn't having as many "spasms" as she had been warned.  But nausea would come and go; again though...not as much as she had been warned.  Her upper shoulder would hurt, again a by product of air that gets inside during surgery.  One of the most frustrating things was that her vision gets really blurry...but just her right eye.  A few times she would just take out her contacts and give up.  

Meds:  ALOT goes into managing meds on a surgery like this.  They had tried the Dilaudid at first...but with the respiratory depression, Lena got an early switch to oral Vicodin.  Toradol is given around the clock as an anti-inflammatory...but we didn't understand this until THIS day...and she (we) had been discussing it every time it was offered and sometimes thinking she didn't "need" it.  After Tim explained that usually they give Toradol continuously while in the hospital....we kept it around the clock and that worked well, along with the Vicodin often, but more on an "as needed" basis.  Valium is supposed to be a "muscle relaxer" and used for spasms in the abdominal area.  Again, LUCKILY Lena didn't have to deal with ALOT of the spasms, but there were a few.  And then there are the support meds for GI and nausea:  Scopalamine patch, Zofran, Reglan (if needed), Senna, Miralax, Fiber (metamucil)....  AND she also has her usual meds she was taking  before the surgery for her POTS and migraines.  Fun fun.

Mother's Day, I was REALLY a mother.... So yeah, this also happened to be Mother's Day.  I will admit that I did feel a little sorry for myself that I was feeling soooo hammered after the screamin mimis...but I got to FaceTime ALL of my childrens before the day was over.  Man if I screwed my whole life up, at least I got these amazing kids and Erick in the process.

Doing well, but "one more day" to be sure...Dr. Hsu's Physician's Assistant, "Tim" (more about him on the next blog..) did the visit today.  Although Lena was itching to get discharged after the "night of the howlers"....Tim and Alejandro conferred and suggested that one more night would be a good idea.  She would be off of the IV (except for the "bolus" of saline and fluids from time to time), and it would give her just one more day for the, ahem, movement of the bowels.  Lena was ok with that - she was still having some pain and getting used to the Toradol, Vicodin, Valium, Zofran combo.

Visitors and a walk down the hall - We had visitors on this day!  Our friends from the RMH Kendra and Abe drove the 30 minutes to visit!  They hung out and we talked and laughed and watched Abe and Lena grab their tummies etc.  We talked food and pre surgery dramatics (Abe had a MUCH longer road to surgery than we did.  In fact this was his 2nd surgery of this type...but first with Dr. Hsu.)  We all then walked down the hall to see Jessica (same surgery, same dr, same day)...And of course we had to do the "show us your scar" stuff.   Hey man, THEY have earned it!

We then scared off our surgery friends when the Missionaries showed up to administer the Sacrament.  (Just kidding, we didn't "scare" them off....)  But we belong to the Church of Jesus Christ of Latter Day Saints...and we had contacted the local congregation and asked if they could send some priesthood to administer the sacrament.  Both the Elders were from Arizona and they looked like they were about 13 years old.  I mean, Lena looked older then they did.  But they both were just another neat addition to the list of amazing personalities and faces we were getting to rub shoulders with this week.  

The night ended quietly.  Lena was tired, but comfortable.  We got a MUCH better night's sleep heading into it with Alejandro's care.  It was really almost over.  What a week.  

3rd Day Post Op - Nausea, bloating, movement thats NOT fun, and screaming banshees.

11 May 2019 - 3rd Day Post Op

• First bowel experiences....you DON'T want the full explanation...but um, HOLD the Miralax pleez
• Lotsa sleeping and not very much eating or walking
• The 600 lb man that can't find his call button AND the screaming banshee
• More indications that this is the "inner city" hospital
• Going way too long without pain meds means TWO steps backwards.....

OH JEN'S got ALOT to SAY about this day....

From our research regarding consensus on this particular surgery...the third day post op is generally the worst.  So we prepared for that possibility.  Alas,  I don't have alot of pictures because well...you'll read in a minute.  But I did include the printouts and records we kept (are keeping), designed and provided by another MALS surgery patient.  Medication log, Pain log, Food log, Bathroom log, etc.  We have a folder to record all these things and patterns for her care.  It's been hard to keep up with...but really nice to have and alot of help.

First bowel experiences....you DON'T want the full explanation...but um, HOLD the Miralax pleez - Lena woke up this morning having had slightly more sleep than the night before....but alot less pain.  We did get a new neighbor that would holler from time to time "SOMEBODY HELP ME"... and clearly he was vomiting from time to time as well.  This was midly annoying at this point but sleep was happening anyway so....

She felt good enough to get up and change.  I went down for a repeat of that yums omlette (spinach, bell pepper and ham....), and Lena ate grapes and a muffin in my absence.  She said, "I do NOT feel hungry but I knew I should eat something."  She was definitely feeling "stopped up".  Welp, we didn't have to wait too long....she made her way to the restroom, but her body sort of couldn't decide which end the food wanted to come out as she started to experience some pretty good nausea for the first time.

Without going into great detail, she did have some movement but it was loose, uncomfortable with cramping and she threw up one time.  We had been warned that the first experiences with movement were usually diarrhea...OR extreme constipation (Hmmm I don't like option A or Option B)....so she unwillingly chose option A and that basically put her out of commission for the rest of the morning.  She slept most of the day after that.  And eating and drinking weren't getting done due to her sleeping.  Unfortunately THIS morning was when Dr. Hsu decided to do his rounds and so she got a bit of a lecture about the need to get up and walk ....  but he did add a scopalamine patch to her orders which added help to deal with the nausea....

She did perk up late in the day though...and so we resumed with a walk to continue supporting "the movement" (although her appetite was nil).  We politely asked to "hold the Miralax" as she would hopefully aim for a solid experience next time.....  Also worth mentioning that by this day Milena wasn't even needing help to get to the bathroom at all.  I felt like a lump as she would just climb out every 90 mins or so and get there super quick (IV fluids necessitate many trips)....

The 600 lb man that can't find his call button AND the screaming banshee...  Sooo I already mentioned the man in the room next to us.  He continued to wail throughout this day.  When we went on the morning walk, I caught a glimpse of him, as his door is adjacent to Lena's - I could see the edge of his bed...and his lower half...and he was, laid across his bed with one leg over the edge, I was VERY grateful at this time that this individual had chosen to leave his breifs on under his hospital gown (gasp.)  As Lena made her round back to her room as we walked, I was like "look, but don't look..."  

600 lb man's hollers were adjacent to us.  As the day moved on, we began to hear another desperate type of yelling.  I don't even know how to describe it.  This one was on the other side of Lena's room, maybe two doors down.  The closest description I can come up with is that old woman in the old Poltergeist movies...you know the medium with the high pitched voice (Zelda Rubinstien) ??  Yes, that is as close as I can describe it.  Now, THIS lady was just outright screaming....and she'd ramp it up when ANYBODY passed by her open door.  "Hey!  Heyyyyyyyy!  I need you to come heeeerrrreeee.......OUCH, OUCH......"  And you could hear a variety of the staff arguing with her about needing to "leave the dressing on".  She'd yell about how she needed "anyone" to "come here" and "FIX THIS" etc, etc, you get the idea.  

At no point during the day did I hear any staff ask either one of them to be quiet.  And to be honest it wasn't that bothersome with the door to our room shut.  We both could rest through the noise so I didn't think too much about it.  How do I know how much he weighed?  Lemme tell you.  One of our "walks" we ran into our nurse, who was in the process of gathering ALL the staff in her wing to "transport" Mr. Heavy.  Each staff member she walked by she grabbed and she said, "I'm trying to get everyone in room 1041 to help me transfer my 600 lb patient...."

About 8:45pm  Lena had rested and recovered from her digestive trauma earlier in the day.  She had walked.  We made a plan: Go to bed, rest up and start fresh the next day to walk walk walk.  We pressed nurse call button about 15 minutes before she planned to go to sleep.  We waited and waited.  After Lena got prepped for bed, I got prepped for bed.  We waited.  We kept pressing the call button and we kept getting "we are coming!"  At 10:15pm I started to point out that Lena's pain medication was wearing off.  At 11:00pm, I started walking up and down the hall, trying to find Lena's nurse.  She was in the "banshee's" room with ALL the aids.  There were around 7 staff members in there - all trying to reason with screaming banshee lady.  Lena's nurse saw me and came out, which started a process of, "I'm sooooo sorry, I'll be right there...."  This process was repeated 4 times.  She finally came to Lena's room to find out what we needed and then apologized some more and ran back to the banshee's room before Lena actually GOT the medication.  By midnight Lena was almost 2 1/2 hours past the proper time of administration of the pain medication...and she was quietly enduring a pain level reaching a "9" out of 10.  

I finally started hanging outside the banshee's room and grabbing whoever I could to tell them that Lena needed her meds.  Finally my weary nurse came in WITH the drugs and administered them.  BUT then we figured out that Lena's IV line in the crook of her left arm was burning and starting to bend and needed to be replaced.  Her nurse immediately said, I need to get someone else to do that.  So STILL not really relief where she could GO TO SLEEP.  It was so depressing because at that point  I new this situation was gonna blow her energy for the next day AND you are supposed to avoid "breakthrough" pain by stringing doses of the pain medication together with no break.  This had ruined that plan.  The staff using all their resources to deal with these two other individuals had now disrupted Milena's care, and would likely result in another setback...an avoidable one that was our of our control.  I could tell, listening to our poor nurse verbally work through the situation...that in her training, she had likely been told NOT to call management for transfers of such patients...she was VERY hesitant to call security or management in spite of the situation.

Actually the IV nurse showed up quickly, but blew the first attempt and so she stabbed Milena (who by now was a non responsive lump) a couple times to get it in.  Once she got the IV in and taped up, she wondered if she should actually hook up the fluids.  I'm like, "Yes" they JUST unhooked it before you came in!"  She says, "I need to make sure since I wasn't the nurse that unhooked it, I'm not her nurse...."  And THEN SHE DISAPPEARED.  I waited another 25 minutes, several times wandering back over to banshee's room to beg someone to hook up the IV fluids - because the entire wing's staff was still in there fawning over her and trying to reason with her.  Lump Lena rolled over and tried to convince me that it really didn't matter, that she didn't care and just wanted to get to sleep.  But I was really concerned that she had been so dehydrated all day with the diarrhea AND she had barely eaten or had much to drink.  I finally just walked the other way down the hall and grabbed some random nurse...who stepped up and hooked up the IV.  She actually checked on Lena twice more that night.  

I settled in, did a good bit of complaining to my online "Dr. Hsu's Post Op patients" group ...and finally reported to our family and my social media contacts that "it is FINALLY done and it's quiet!"  Right then, and I am NOT making this up....some aid went into 600 lb man's room to check his vitals...  "WHERE AM I???"  was how it started....then 30 minutes more with his yelling.....so so so done.  

SO this, plus on our walks around the floor, the fact that one room had a policeman posted outside of it at all times...was definite indication that we had found ourselves at Bridgeport's finest inner city hospital.  You know what?  I told myself several times that day and night that both 600lb man and screaming banshee lady must have "a story".  I really didn't mind until it impacted Lena's care.  Our nurse really WAS doing all she could, I think she really didn't have another option to send either patient out that night.  I did talk to security in the morning about changing our room - but our morning nurse "Alejandro"....more about him in the next post...assured us we'd have more quiet from then on....And we did.

2nd Day Post Op - Coming off respiratory depression, walking and recuperating

Rare Disease Day was actually back in February -
But I thought this little logo was "Milena" Warrior Appropriate....

Mailing graduation announcements from the hospital :-/

Pretty flowers from Grandpa and Grandma Carlson
(Yes that is her "ice pack baby" under her shirt, on her incision....)

How she spent most of the morning

Managing a walk and doing darn well at the walking....

10 May 2019 - 2nd Day Post Op 

• Awake with pain at "9" from 3:30am until past 7:00am
• Clearing out too much Dialudid and resting up from the respiratory depression and pain.
• Missing the BYU Alumni Scholarship Luncheon
• Mailing graduaton announcements
• Finally having enough energy and low enough pain for walking
• Trying to figure out the best combo of pain meds/relief and moving bowels....

Jennifer's DETAILS of 10 May 2019:

Awake with pain at "9" from 3:30am until past 7:00am - The last post explained how Lena has ended the previous night with respiratory depression due to too much Dilaudid in her system.  This resulted in labored, shallow and painful breathing...along with an ineffective CO2/O2 exchange.  (Less oxygen to brain and body).  She also didn't get any real pain releif until the Pain Management Doctor visited the following morning.  I loved the term, "Narcotized" that Dr. Hsu used to refer to her experience later on.....its a real word.  Looked it up.  Totally applicable: "under the influence of narcotics; a drugged sleep; were under the effect of the drugged sweets; in a stuperous narcotized state."  Ima look up "chocolatized" next.....

Clearing out too much Dialuded and resting up from the respiratory depression and pain.   Spending several hours at a high level of pain/stress is NOT condusive to healing.  She promptly fell asleep for most of the morning on this day.  And who could blame her?  I snuck down to get another omelette (spinach, bell pepper and ham mmmmmm), and mailed Lena's graduation announcements.  Milena has missed the bulk of her senior year activities.  She plans to fly home the day after her post-op appointment on 5/21...and her actual graduation is 48 hours after she makes it home!  We are hoping she will feel up to walking across the stage :-)

Missing the BYU Alumni Scholarship Luncheon - Milena has earned three solid scholarships!  One was from the BYU Alumni Association in Dallas.... and the awards Ceremony was on this day.  Erick attended in Lena's honor, accepted the scholarship and read her acceptance, "thank you" speech.  We got notification from the high school just before she left for surgery, that she was invited to another scholarship event at the school.  My momma bear tender spot got all offended because the "form" letter invited her to the event...and the school counselor knew FULL well that she would be still in the hospital, recovering in another state from this surgery.  I know it's my problem- but with the collection of issues Milena and her older sister deal with - we end up feeling like no one really believes in their physical pain and suffering; they "look fine" and so people expect them to "be fine".  They are not.  They function physically and internally, at a much lower rate than the average person.  Less than 70% as a matter of fact.

The last 3 1/2 months have been very difficult for Milena to negotiate her finishing high school and for a while, her graduation this year was not assured.  Even though we had TWO doctors letters, stating she wasn't well enough to attend school - the high school insisted that she really needed to "just attend as much as she can for her own mental health."  We sought homebound classes, but went round and round because then the school threatened that she couldn't attend any school events in that case.  They just wouldn't work with us on this at all.   Milena ended up just about killing herself trying to get physically to school several mornings a week, in between all the doctor's appointments, IV infusions for dehydration and malnutrition, Urgent care visits, and continuing to lose weight due to her inability to eat or drink, etc.

In any case, the school had their reasons for the way they handled things (she was enrolled in 3 dual credit classes that the high school had NO control over - as they are enrolled through the local community college system.)  BUT even though it was touch and go-- Lena finished her Economics final at the Ron McDon House the day before surgery... and she has ONE essay to write by next week....AND THEN SHE GRADUATES!!  She deserves a medal to go with her warrior scar on her abdomen....

Finally having enough energy and low enough pain level for walking - After clearing her system from her Dilaudid overload, and catching up on a lot of sleep, AND finding a better combination for pain relief, by mid afternoon Lena was ready to try walking again.  I'll be honest...it felt like we took several steps backwards due to the Respiratory Depression issue.   But, with this particular surgery, I am finding the recovery dynamics can change hour to hour.  There is just SO SO much involved.  Several body systems:  Nerves, digestion, and pain issues.  She did walk by late day and she wasn't wobbly or in pain.  Win win.

Trying to figure out the best combo of pain meds/relief and moving bowels.... By the end of day two...enough food had gone in (YAY) - but of course anyone who's had major surgery knows that the food must come out, and especially in THIS surgery, since prior to surgery most MALS patients can't eat or drink without severe epigastric pain (and are often in a state of malnutrition and dehydration...) ....moving the bowels is of utmost importance in order to look forward to going home from the hospital.  By the end of day two, they were pumping Milena full of alot of "helps" to get things rolling (Miralax, Senna, laxative, etc)....and she was feeling the bloat.  Walking is supposed to help.  The staff listen to the abdominal area with their stethescopes for the "sounds" and I almost felt like I was at home with Hurley (fart discussions...) Alas, we went to bed this night with no reward to that "end".  BUT about midnight, there was a faint noise and ..... way too much excitement from both her and I.....stay tuned for more bowel fun....

The beef fried rice that wasn't worth the trip and "oh yeah THAT is why it's lockdown..."  So I'm adding this one just for a PSA.  I decided on my week of I can eat whatever, that beef fried rice was in order.  I research a couple of places close to the hospital and when I venture out for a CVS/Gas X run I pulled up to the JADE GARDEN around the corner from the hospital.  It got a bunch of good reviews and I figured I'd just run in.  First I had to pass the restaurant twice to find parking...and when I did it was up the street.  As I passed I noticed, um, a few things that were, well, things I hadn't seen since my accidental drives into East LA...or that one time we hung out in Compton.  Yup  you guessed it, if I was looking for a "rock" to go with my Chinese food, I think I'd have been in luck.  I was WAY uncomforable in my floral keds as I traipsed the half block to the Jade Garden.  It looked SKETCHY.  Aaaaaand as I made my way in, I figured I'd get my food and get the heck out.  As I ordered, I noticed a young man to my right.  He had on a light grey hoodie and was maybe 11 years old.  Clearly he was trying to ask me something.

"Can you get me something to eat?"  Now, he didn't look like he was starving, but he had a kind face and we are staying two full weeks at a totally free Ronald McDonald house for the duration of this trip and surgery and I'm thinking, "yup if you got the gumption to approach the white lady for food, I'm buying."   So he ordered and we talked.  His name was JJ and maybe he was a hustlin me but all he got out of me was some pork dinner plate and veggies.  I practically ran to my car and got the heck back to my security infested St Vincent's Medical Center.  Probably the best $8.95 I spent the entire trip.  Although the beef fried was just MEH.
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