Still at the hospital...

As I write this, it is Day 10 of my mom being in the hospital (day 9 at hospital #2).

It has been a long and tiring week and so much has happened since my last post. My brothers and I have taken turns staying overnight with our mom and we've been trying to not leave her alone. She was alone for two afternoons this week for a few hours each time while I babysat my niece (a job she normally does!), but other than that and us running down to the cafeteria to get a drink or a bite to eat, we've been with her around the clock. I'm so grateful to my brothers for doing as much as they can while they are working full time…have I ever mentioned how much I love these two humans?!?

I know I was vague in my last post about what was actually happening, but I didn't want to include any medical details until my mom was able to give me permission, since this is really her story.

She had 32 inches of her small bowel removed. 32 inches of dead, diseased tissue. Her incision runs from several inches above her belly button, through her belly button, and extends several inches below her belly button. It is no joke. So many staples.

Throughout the week, every time she made progress, there seemed to be a setback. She's not only dealing with this, but also Type II Diabetes and Pulmonary Fibrosis, so they had to keep an eye on her blood sugar because she didn't eat anything until Wednesday and also her lung function and oxygen saturation levels. However, even though things seem to go well and then not so well, the general trend has been in the right direction.

On late Monday afternoon, she was transferred to a regular room. This alone was a big relief, because the Trauma ICU had many restrictions (which is perfectly understandable). We had to be buzzed in when we wanted to go to her room because it is a secured unit; no outside food or drink was allowed, meaning anytime we needed to eat or drink anything, we had to leave the unit (the same went for us using the restroom – we had to leave the unit and be buzzed back in); only two people were allowed in her room at any one time; and after 9 pm, only one person was allowed in the room with her. With her regular room, there is no limit to the number of visitors allowed at one time (although of course we want her to rest, so we don't want her overwhelmed with people) and multiple people can stay overnight with her if necessary (although my brothers and I have just been taking turns).

We had a really rough night on Tuesday. My mom was on a clear liquid diet and unable to keep anything down. As such, she was seen by two surgeons and they agreed that she needed her nasogastric tube reinserted to suction material out of her stomach (this had just been removed the day before). As you might imagine, having a tube inserted into your nose, having to SWALLOW, and then feeling it being snaked down into your stomach is a thoroughly horrific ordeal.

The procedure did not go well. Instead of the tube going into her stomach, it went into her lung. Beyond awful for anyone, but worse for someone with pulmonary fibrosis. After much consultation, it was removed shortly thereafter and there's been no further mention of that tube, thank goodness. What a complete nightmare.

She has slowly been taken off all of the machines…as of right now, she is on oxygen, which is normal for her on the best of days, and she has an iv for antibiotic fluids.

Which leads me to the latest setback.

We had high hopes that she would be discharged on Friday (we have plans to have her move in to our house for probably the remainder of the summer while she recuperates).

Obviously that didn't happen.

On Thursday morning, when they inspected her incision, they discovered it was infected. Not what we wanted to hear. They put her on antibiotics and drew a line across her belly to monitor the spread of the infection.

Yesterday morning, the inspection had spread beyond the line, so they removed a few of the lowest staples to allow it to drain and gave her more antibiotics.

Yesterday afternoon, after another examination, they decided to open up the entire wound. The WHOLE thing. Right there in her bed. And I watched. All the staples were removed and the newly healing skin was completely opened up. It was both the coolest and grossest thing I have ever seen. My mom was a rock star, lying in bed with her belly wide open so they could look down into to check on the interior sutures. I was in awe and completely shocked at the same time. Despite growing up in a medical family, I'd never actually seen the inside of someone (I mean, why would I have?), so it was fascinating. Sadly, even with my untrained eyes, I could see the infected tissue clear as day. I don't know how my mom handled all of that in such a zen-like manner. Honestly, I am the proud daughter of a complete badass.

They packed the wound with gauze and covered it up. The hope is that the antibiotics will help get the healing started, and once the infection is cleared up, they are going to use something called a wound vac to pack and seal it (this is be changed every two or three days).

As awful as all of that was, she said she felt better afterwards because the pressure was relieved. She was able to nap yesterday afternoon and slept fairly well last night. They came and checked it this morning, took out the packed gauze and put fresh gauze in there, so I was able to see it again. Her belly looks better than yesterday, so it would appear that the antibiotics are doing some good. I also think the fact that she was able sleep helped, although she is in a considerable amount of pain right now and is having trouble getting comfortable.

Thank you once again to the family and friends who are checking in. I'm doing the best I can with updates and I'm sorry if I don't respond to you individually, but know that I appreciate all of the kind words you are sending my mom from the bottom of my heart!

Happy Tails to you!

52 Hours

On Thursday, at 10:30 am, my mom called me and said she needed to go to the hospital. This has never happened before. This is a tough woman. She's been battling a horrific lung disease for almost four years and is doing a remarkable job.

She was also an obstetric nurse for 43 years who told us, "You're fine and you're going to school!" and unless we were bleeding or vomiting, we didn't get away with feigning any illnesses because she'd seen it all.

So for her to say she needed to go to the hospital was incredibly scary for me.

In the interest of protecting her privacy, I will keep the medical details to a minimum, but what I've learned in a very short amount of time is the unbelievable difference in the quality of care provided by two different hospitals.

Thursday

10:30 am – my mom called me stating she needs to go to the hospital

11:00 am – I picked up my mom and drove her to the emergency room at hospital #1

12:00 pm – I went to the get the car after inquiring how much longer we would be waiting and being told "we don't know how long it will be" – obviously I was livid and I decided I was going to take her to another hospital – she was in acute abdominal distress and suffering greatly – I went to get the car to pick her up at the door and they had somehow miraculously taken her into a room after I made it known we were leaving – I should have followed my gut and left at that point, but part of me was just so relieved someone would finally be seeing her

4:00 pm – after a long afternoon of heavy meds that did NOTHING to ease her pain, a CT scan, an EKG, a chest x-ray, and countless labs, she was admitted because they couldn't tell us what was wrong

4:30 pm – she was moved to a regular room where we went through answering the same questions for seemingly the millionth time – such a frustrating process

7:30 pm – C and my brother G arrived to visit where they witnessed that all the staff was doing was giving her pains meds that weren’t working without actually getting to the bottom of anything – we were ultimately told she will see a gastroenterologist the next day and they might do an endoscopy

9:00 pm – C and I left to go to my mom's house – C picked up my mom's dog to take her to our house and I gathered a few things my mom had requested before I returned to the hospital

Overnight – my brother and I took turns sitting up with her because her pain was worsening and she could not sleep

Friday

6:00 am – we spoke to the charge nurse and asked when she would be seeing a specialist – we were told they didn't know – at this point, my brother and I were very angry and we began discussing the possibility of signing her out to go to another hospital – the charge nurse made some remarks about how if we leave against medical advice, insurance might not pay her bills at the next hospital and you can imagine how we felt about such a passive aggressive message

7:00 am – the regular doctor came in and we did not hold back in expressing our displeasure – we were assured that the gastroenterologist would be called and that in the meantime, my mom needed another x-ray – she was trying to be a compliant patient, but my brother and I were not having it – we requested the paperwork to sign her out and one nurse laughed while another rolled her eyes – since I always attempt to follow the "if you don't have something nice to say, don't say anything at all" approach, I will not share here what I thought of those two nurses

8:15 am – a tech finally showed up to take her for an x-ray and my brother and I said no – that was it – we could not believe the treatment (or frankly, LACK OF treatment) my mom had received – we demanded the AMA paperwork and after it was signed, were told they were burning a CD of her CT scan to take with us

8:45 am – after standing at the desk inquiring multiple times about the CD, we left because my mom was in such excruciating pain

9:45 am – after an hour-long drive, we arrived at hospital #2 – my mom was immediately taken to a room, immediately assessed, and was seen by an emergency doctor within 30 minutes of arriving who had already read all of her files and test results and had some specific ideas about how to proceed

11:30 am – my brother J, sister R, and baby niece arrived to see mom, but because it was the ER, only two people were allowed to be in my mom's room, so we had to take turns

12:45 pm – my niece needed to eat, so we decided that my two brothers would stay with my mom, while my sister, niece, and I went to get lunch and go to my house so I could shower and rest for a while

2:00 pm – we weren't even at my house yet and my brothers texted to tell me that my mom was being taken to the OR for emergency surgery – my brothers were told that if we'd waited another day to bring her in, it would have been fatal for my mom – I have never been more proud of a decision than the one G and I made that morning to leave hospital #1 against medical advice

3:30 pm – my brothers saw my mom for a few minutes in the recovery room, but were told that they were going to keep her sedated and intubated, and with an open incision until a SECOND surgery on Sunday – keep in mind it was Friday afternoon at this point - terrifying

5:00 pm – my sister, niece, and I headed back to the hospital, but since my mom was still in recovery, there was nothing for us to do but wait, so we ended up meeting my brothers for dinner

7:00 pm – my brother J, sister, and niece left to go back to my house for the night (C was there with the three dogs), while my brother G and I went back to the hospital

8:30 pm – we were finally allowed to see my mom in the trauma intensive care unit – two people are allowed in the room, but after 9:00 pm, only one person can stay overnight

9:00 pm – my brother G headed home and I settled in to the reclining chair – my mom was hooked up to so many machine and was on a ventilator – I fell asleep quickly due to sheer exhaustion, but was woken countless times as nurses were in and out of the room to adjust meds, give her blood and fluids, and monitor her vitals – there were some concerns about her blood pressure dropping, and so ultimately they lowered the sedation meds as a result

Overnight – with the sedation meds wearing off, my mom was coming around a little bit, so I stood at her bedside and talked to her and sang to her even though I wasn't sure she knew it was me or could even hear me

This is just a small sample
of the equipment
she was hooked up to
on Friday night

Saturday

8:00 am – at this point, she was fairly awake and able to communicate through squeezing my hand and slightly nodding or shaking her head – and because she was mostly awake, they took her off the ventilator to have her breathe on her own even though she was still intubated

9:00 am – unexpectedly, I was told that they would be taking my mom back to the OR – because she was awake, and overall doing well, they decided to go ahead and do the second surgery – I immediately told C and my siblings, and before I knew it, she was being wheeled away, but not before giving me the "I Love You" sign, which brought me to tears – I sat in the surgical waiting area and waited for updates

12:00 pm – C, J, R, and my niece arrived to wait with me, and it wasn't too long before a surgeon came out and told us everything went well, which was music to our ears, and that we should go get lunch because it would be a few hours before we could see her

2:30 pm – my brother J and I were finally able to see her in the TICU, and G joined us shortly thereafter – even though she was very drowsy, for someone who had two serious surgeries in less than 24 hours, she looked spectacular

What a physically and emotionally draining 52 hours.

Since then…my brothers spent the afternoon with her, and then C and I went to visit her this evening – she was able to speak for herself (although her throat is very sore from the intubation) and is making jokes and smiling! What a difference! She'll be in the hospital for several more days, but will be moved to a regular room when she is stable enough to do so. J is staying overnight with her so that I can hopefully get some sleep because I am just about running on fumes. I've been working hard to keep my family members in the loop and answer everyone's questions and keep track of everything that's been happening with my mom.

I will never, ever, ever be able to adequately thank the staff at hospital #2 for their expertise, their care, their professionalism, and their effectiveness and efficiency. I shudder to think what could have happened if we had stayed at hospital #1.

And I really do have the best two brothers in the world.

My mom is amazing. That's the only word for it. And I know she will continue to improve and be back to her usual amazing self in no time!

Happy Tails to you!

Morning at MK

After getting off the Disney Dream, we were supposed to return to WDW spend three nights at Port Orleans French Quarter with our Helen and Bob Magic Bands in honor of The Incredibles 2. You may recall that we canceled this third portion of this trip so we could get home to Ginny because we were so worried about her.

Mr. & Mrs. Parr

However, before driving home, we decided to drive back to WDW just to go to MK for a few hours first. I had really wanted to purchase a Mickey ear hat with rainbow stitching on it, so we figured we'd get that done, grab a bite to eat, and wander around the park a little to soak up the magic.

We parked at TTC and took the monorail over to MK. Unfortunately, it was incredibly busy and SO hot, but we just made the best of it. We got our favorite Nutella waffle sandwiches, rode the PeopleMover, and did a little shopping. And on the monorail back to TTC, we passed the Wedding Pavilion...swoon!

Even though it was a quick visit, it was a super fun morning, and we were in the car and headed home at 1:00 pm!

Can you tell we really loved
The Incredibles 2?!?

Up art!

Ellie & Carl <3

This art is so perfect...
Spaceship Earth, monorail,
World Showcase, fireworks,
Figment, AND TINKER BELL!

Zero <3

I bought this postcard and am
regretting not buying it as a print!

A parasol with colorful Mickey balloons
and a rainbow castle! I'll be using this
for shade at recess time!

Look at this cup!
And that castle!
Ahhhh...I absolutely LOVE it!

We'll be back to WDW in September when we'll go to DHS and see Toy Story Land!

Happy Tails to you!

Disney Dream 2018

After checking out of our room at Pop Century, we drove from WDW to Port Canaveral, parked, and checked in for our cruise. Our boarding group number had already been called, so we were able get right on the ship without having to wait around the terminal!

Shirt of the day!

Yes, I brought all of these with me!

These shirts received the most
compliments from cast members!

#LoveIsAnOpenDoor
#ArrestedDevelopment

Last summer, I was so fortunate to go on a cruise on the Disney Dream with my mom, which completed my "grand slam" of cruising on all four Disney ships. However, C had yet to go on the Dream, so I actually booked this cruise while I was on the ship last August. On our previous three cruises – as well as the cruise with my mom – we've been spoiled with a verandah room, but as you might imagine, they are on the pricey side. So for this cruise, we decided to try an inside room – one with no window to the outdoors. To be honest, I was worried that I would not like it. One, I absolutely love the verandah rooms and being able to look out at the ocean for hours at a time, and two, I thought I might feel somewhat claustrophobic without any exterior views.

However, I loved it! LOVED it! Totally unexpected! I definitely attribute much of that to the room set up; as the pictures show, the bed was against the wall opposite the door, and that helped to maximize the space in the small room. But the BEST thing about the room was the Magic Porthole! During the day, it offered a view of whatever was happening outside the ship via a live camera feed and at night, it was animated – dark sky with stars. Just that alone would have been noteworthy, but it gets better. A few times per hour, some animated characters came across the screen and it was ADORABLE! There didn't seem to be a precise schedule, so if we had the porthole turned on and the pixie dust appeared, I tried to grab my phone to record the magic, which sometimes worked out and sometimes did not! I uploaded some video clips down at the bottom of this post to give you a sense of how cute this is! There were many others I was not able to record in time, but you get the idea! And whenever we needed a fix, we went to one of the outside decks and admired the ocean and the sky. Maybe not as convenient as simply stepping out onto our own verandah, but just as beautiful – and the awesomeness of the Magic Porthole coupled with the much more affordable price more than made up for it!

Our door magnets!
#Up
#Neverland
#San Fransokyo

The ship is stunning. That's all I can say. It was nice to have been on the Dream previously, so some of it felt familiar, but there were still many things that I hadn't discovered last summer! As with the other three ships, the Dream has a variety of horns that are Disney tunes: Be Our Guest; A Dream is a Wish Your Heart Makes; Do You Want to Build a Snowman?; It's a Small World; Yo Ho (A Pirate's Life for Me); and the call and answer of When You Wish Upon a Star and Makes No Difference Who You Are. Love them!

After grabbing some lunch at Cabana's, we visited the kids' club because they offer an open house period before the ship sails just so I could go and take a picture of Slinky.  With the impending opening of Slinky Dog Dash at WDW, it seems like everyone is suddenly all about Slinky! This is not a bad thing…Dachshunds are awesome and to me, Slinky is the real hero of Toy Story! And then they get a real Dachshund, Buster! And in Toy Story 3, it seems like everyone cries at the end when Andy gives away his toys, but I always lose it long before then when the toys are in the incinerator and believe they are about to die and Woody and Slinky hold hands. I.cannot.handle.it. My family has had a total of 12 Dachshunds, with our first being Muggsi, who joined our family in June of 1995. Then Toy Story came out in November 1995. Pretty convenient coincidence for my Dachshund-loving family! I've always felt like Slinky has been underrepresented in the American Disney Parks (meanwhile there's Slinky Dog Zigzag Spin in Disneyland Paris and we spotted Slinky in severalplaces in Tokyo Disneyland), so I'm glad to see Slinky finally getting the attention he deserves! I love Slinky!

This was a five-night cruise with two stops at Castaway Cay and one stop in Nassau. We really enjoyed both days at Castaway Cay…what a beautiful place! We did not get off the ship in Nassau because it is so fabulous to be on the ship while many people are not! On the second day we spent at Castaway Cay, we were riding the tram to the adult section of the island and my beach hat blew away and onto the road. I watched it grow smaller and smaller in the distance and dreaded the long walk that would be required in order to get it back. Turns out that wasn't necessary because a cast member took a golf cart, retrieved my hat, and brought it to me as I was getting off the tram! How amazing was that?!?

We only ate in the on-board restaurants on two of the five nights – just the nights we were scheduled for Animator's Palate. There's nothing wrong with the other two restaurants, but we just preferred to hang out and get room service! Plus, there's snacks available pretty much whenever you want, so we just didn’t feel like formal sit-down dinners most of the time! The first dinner at Animator's Palate was themed around Crush, the sea turtle from Finding Nemo and the second dinner was on Pirate Night, so everything was pirate-themed. Both were so fun!

The entertainment options on the ship are almost endless. There are lots of characters around the ship; Disney and Pixar movies on the TV in the rooms, in the theaters, and on FunnelVision; karaoke, trivia, bingo, comedians, magicians, fireworks, musicians…the list goes on and on. We watched several movies in our room, saw Solo and The Incredibles 2 for the second time each, and enjoyed various performances throughout the cruise. The highlight, however, was Ultimate Disney Trivia. Why? Because I WON! And it was SUPER hard! I only got 13 out of 20 correct – and that should tell you something! You may recall how I was ROBBED on the Fantasy last year – and no, I am not over it! – so I was determined to win this trivia game! A few of the other people also seemed to be pretty serious Disney fans, which made for a pretty tense event. A proud day for a nerd with a lot of random and obscure Disney trivia rattling around her brain!

On our last night, we hung out at Pink, which is a wine and champagne bar. For about 45 minutes, we were the only people in there, and the amazing violinist was performing. It was so perfect!

We were certainly sad to leave such a beautiful ship, but we were anxious to get home to Ginny! We already have another cruise booked…next June on the Disney Wonder to Alaska to celebrate my mom's 70^th birthday! There will be ten of us going together, including C's parents! (Yes, we ARE those awesome weirdoes…everyone gets along and genuinely loves each other and there's no "in-law" business…we're all just one big family!)

I'll end with the clips from the Magic Porthole! Magical indeed!!! I wish I could have uploaded more of the ones I have, but some of the clips were too long!

Happy Tails to you!