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.
.