On December 29th I said "see you later to my kids"
AND IT KILLED ME!!!!
I was petrified that I was saying "goodbye forever". Dramatic, I know, but surgeries and me do NOT mix well. Plus, most people don't survive ONE brain surgery- and this is officially my third. Blah!!! And it would be Jackson's 14th surgery. The kids are pretty good at making me feel loved when I need it, as well as making me laugh!
We made good time and had good weather for the 4 hour drive to UPM Presbyterian Hospital in Pittsburgh. We rented a room at the Family House - which is similar to a Ronald McDonald House. Jason and I arrived the evening before surgery. We took a photo of us as we were heading to the hospital at 4 AM. Knowing what I know now, I wish it was a better photo, with me fully smiling... ear to ear.
I had a cat scan to map out my arteries in December at UPMC. It showed that the tumor had grown a good amount since the MRI in October, so I was supposed to be the second surgery with an MRI prior to surgery, Last minute, Dr Gardner disagreed with that plan and took me to surgery first, without the MRI. We had to arrive at 0500 for surgery. I was taken back to the OR around 0700. Jason expected to see me shortly after 1300, but instead, a nurse came out at 1300 and said that it would be a few more hours. When they did finally put him in the OR consult room, he waited almost a complete hour, until Dr Gardner showed up. Jason said his body language screamed "stressful" as he told Jason that it was "touch and go" towards the end of the surgery. He did not elaborate. He said that he did remove appx 95% of the tumor: He had to leave some of the tumor's "sac" and some on my 2 nerves because it was too risky to try to get it all. He did Tell Jason that when they tested all of my nerves (even hearing) the nerves seemed very alive, so he was hopeful.I woke with 4 IVs and an arterial line so I'm wondering what DID happen to me?
I also had some surgical drawings on my belly when I woke. I later found out that it is where they were planning on taking a "fat transfer" if they needed it. I wish they asked me first where I would WANT the fat taken from. Certainly, not my belly1
I finally saw Jason at 1700 after a CT on the way to my ICU bed. I woke up from surgery and was a bitch! I was yelling at the people transporting me, because I could (literally) feel every tile on the floor. My body was so sensitive, and in pain. I was cursing people out, making smart-ass comments and was generally just not myself. Jason thought it was funny. In retrospect, I didn't get great ICU care right off the bat, so I think I was offensive, not funny. I was hallucinating at times too... I swore my tongue was 2 feet long and turned into a staircase that the mouse Jerry kept walking down whenever I opened my mouth. I was scared, even though I knew I was hallucinating.
Similar to this photo...
Jason says that when he first saw me, all of my face worked. But within 24 hours, my right side was totally paralyzed. My right eyelid didn't even shut all the way, so I had become a pirate lady. The Drs weren't too concerned and said they were hopeful that I would regain function of my right face, but it could be days, weeks or months. Great. I was sent to a Neuro floor room for a night where Jason took some photos and video s to help me remember everything, I didn't even really have time be sad about it and sulk. Luckily, they let him stay all night on my recliner that night. A Dr came in at 0100 to UNSTAPLE my dressing from my head, lol. Then we got our NEW YEARS photo before I went back to sleep. That was a surprise to wake to.
Thirty-six hours after my surgery, I was sent home!!!!
It's all a blur. Unfortunately, with all the different communication conversations going on, somehow the Liounises did NOT get the message that my face was paralyzed... my Mom was very surprised when she walked into my bedroom, Whoops.
The plastic eye patch is called a "moisture chamber" when I got sick of it, I had to tape my eye shut, to not dry out.
Since my right lips don't close, I have to HOLD them closed to drink... ugh.
One benefit of my face not moving is that I can FINALLY do the Rock's eyebrow... I'm temporarily no longer the only Stringham that can't.
While I started recovering at home, Jack started with UTI symptoms, so Jaylee was busy driving home around Lancaster county to get him seen and treated asap. Luckily the Cipro seemed to help right off the bat and he never got very very ill. So, surgery did not get cancelled.
I suddenly woke at 0500 SUPER dizzy and weak. I had no idea why. I kept trying to sleep but around 0800 Jason helped me up to pee and then I brushed my teeth- strike that, I started to brush my teeth. Soon into it, I stopped and just STARED off to the right for a bit. Apparently Jason kept telling me to knock it off, and soon thereafter, I collapsed- but kept staring off to the right. He aarried me to our bed and I woke up about a minute later with no memories of it. I did not act exhausted and post-ictal though. Of course I thought it was weird but I wan't too terribly concerned. He paged the on-call Neuro surgeon but they never called back. Then Mandy happened to reach out to see how things were. She insisted that I needed to go to the ER and should actually be a "stroke alert" patient. She was pretty ticked off when we waited in line of 4 people to register, went to triage after 10mins and then returned to the waiting room until a bed opened. Luckily it was not a stroke. But my elevated bloodwork sent me for a CT to confirm that I had a stupid pulmonary embolism AGAIN. This time just in my left lung and not causing me shortness of breath. So, Dr Gardner wanted me transferred back to UPM for care. That would be great, except that the weather turned bad quickly and my BP plummeted to 80/50, even after 3 liters of Saline. So, my helicopter transfer had to cancel mid flight to pick me up and I was too unstable for a 4 hour ambulance drive. Finally late on Jan 6th afternoon, a helicopter arrived to get me. During the ER stay at LGH, there was THREE different situations where they were getting ready to discharge me. It was not a smooth stay in the ER for so long- everyone was telling me a different plan for me. The ER was the only place that I ever saw Becca! And only for 30 mins before I got picked up. She was here a week helping out- Thank God!
This "goodbye" on the 6th was even harder than the first. I looked like actual death, I felt like I was almost dead, and Jason really thought that I was going to die in Pittsburgh. Yuck - I did not like it. Jason had to take Jackson for his surgery on the 7th, so Mandy graciously planned on heading to Pittsburgh with me for the week. She had taken off that week anyway "just in case" I needed her. Crazy how everything was timed perfectly, even though we did not know it when we were planning. Thank you Jesus!!
Luckily they snoozed me with Valium for the flight, per my request. The flight crew were three of the nicest people I have ever met in my life!! The winds are so bad that our 50 min trip took 90 mins. The Valium really helped- I actually enjoyed it at some points! And in my photo, I look like Im enjoying myself. The whole experience was surreal... like I was in a Die Hard movie, sliding into the back of the helicopter on the roof. Though I was scared, I did take advantage of situation and look around quite frequently. My family watched me take off from the street and Mandy watched me zip over her 25 mins outside of Pittsburgh!
To my surprise, I had to go through the ER in Pittsburgh. I guess they needed to assess me and see how ill I was so they knew what department to admit me to. I headed up to the Neuro floor (8D) after a few hours. Mandy and I had a pizza delivered to our ER room while we were waiting, lol. I was started on IV Heparin while we got my oral Coumadin to therapeutic levels. I realize now that I am forgetting things over the past 2weeks and feeling foggy already about how everything exactly played out. I wish that I had blogged then and there. I did start updating family just on Facebook, that’s how I have the photos of my updates, but it wasn't too detailed. Mandy could only be there for visiting hours 9-9 daily so we got her a room at the Family House, where Jason stayed.
I woke Monday to great news about Jackson:). The kidney infection was a "simple one" that cleared up!
Mandy and I ended up ordering out a nice late lunch/early dinner every day that I was there. The hospital French toast was tolerable but not much else.
January 7th was a BIG CRAZY day. Jason arrived at 0400 at CHOP. Better early, than late!! Then we got surprising news- his surgery would be EIGHT hours long! I wish someone had given us the heads up! Once he had his oral Versed, he didn’t seem too worried about surgery! I love that we have video calls now… from one hospital to the other.
While waiting to hear about his surgery, we had excitement on my hospital floor. Mandy asked if I was ready to run- but I can’t even walk without someone practically carrying me!! I told her to “save herself”! We never felt scared, fyi.
We finally heard news from Jason… he’s not the best at keeping people updated with details.
Mandy snuck out for the afternoon to get a new hair style. It looks great. It’s funny though because she wanted to go shorter and more dramatic, but the lady refused to do it!! She brought back a huge Italian meal. Her friend sent her money to treat us to a nice dinner. People are so kind! With 1/2 of my face not working though, noodles were a silly choice. I can’t suck them in my mouth, nor bite with the right side. We draped a blanket/bun over me so I didn’t have to worry about spilling.
That evening, (before I was eating my left over dinner, as-pictured above, with CRAZY hair) I had my EEG done. It was relaxing and felt like a trip to the spa! They parted my hair and played with it for 30 minutes before they turned off the lights and told me to take a 30 minute nap. I would not mind doing that again.
That night I was finally able to sleep because my baby was safe!!
Only to wake up at 2 am on the 8th to…
I honestly did not know just how big of a deal the fires would become.
Jackson was in so much pain that first night. Jason was pissed because only Tylenol was ordered. He finally got a Dr to order something stronger, but it was a one time order. He was very bothered by the Foley catheter too- we had no idea he would have one in after surgery. They said it was to keep his bladder from filling and stretching out the stitches for the first 3-4 days. Makes sense when I think about it, it was just a surprise. Apparently, it really bothered him too… he wasn’t able to move around it get up because it hurt so bad. We now think anxiety has a lot to do with it. They said that he could not leave until his pain was controlled, he was up and moving around and he moved his bowels- Jason warned me that they would be there a few days. So, we got Jaylee a room again at the Ronald McDonald house but this time it was in Camden. The photos were wild…
My parents made the trek out to Pittsburg to bring Mandy and I some Panera's for lunch. There is a Starbucks and Panera in the hospital!!
On top of all of this, Jimmy was home for a few days with Aunt Beccca. They were playing a lot of Fortnight, which was the best distraction for him. Aunt Maria flew in to Harrisburg at 8:00 that night. Luckily, my neighbor Melonni was able to pick her up, especially since we got snow.
On Thursday the 9th, Jaylee drove up to JFK early in the morning to pick up Jennibelle. They visited Jack in Philly on their way back to Lititz. Jaylee then drove Becca and Maria back to Philly to spend the day with Jason. After a few hours at CHOP, he drove them back to Lititz.
While he was driving them, I was able to talk to a nurse at CHOP and asked for anxiety meds for Jackson. They gave him one dose of Hydroxizine- then he slept for 7 hours straight during the afternoon. I was meaning a tiny bit of Ativan or something, not to snow the poor kid. So, another day done where he wasn’t any closer to going home. I like that Jackson is old enough to speak up for himself. My video calls with him were very uneventful all day, he was barely awake. He was still very uncomfortable with the gas pains from a robotic surgery.
Poor Mandy started with random hives all over her face all afternoon. No idea why.
My smile is improving little by little each day. But my INR had only increased from 1.3 to 1.4 and I couldn't go home until it was at least 2.0.
All of their driving exhausted me, I guess.
Friday January 10th, I woke to some rally good news.. my INR had jumped up to 1.9. They said after a lunch time repeat, I would probably be discharged. Whoop Whoop. On Thursday, We were thinking that I'd be in the hospital until my follow up appt on Tuesday AM. around 2pm the suddenly walked in with my D/C paperwork. Mandy had to get an Uber to her hotel and drive back to the hospital to pick me up.
Jackson was also having a good day because they took out his catheter early int eh morning. Jason said that as soon as it came out, he was a new person. They were talking about sending him home on Saturday! They even decided to pull his surgical drain out in the afternoon.
Mandy returned around 4 and we were on our way!!
HAHAHA. - NOPE! 
A dead car battery!! It could not handle the bitter cold Pittsburg weather. Too bad she was parked in the ambulance bay, just picking me up. The hospital security dudes were the opposite of helpful. Turns out, her fancy car is very difficult to jump- you have to take off a top layer of rubber, or something like that, The they tried to jump her battery, it took it from almost dead - to dead dead. They said they'd return in 10 minutes with a stronger jump pack. They NEVER returned. We asked an ambulance to help us- and they tried! But the ambulance was too tall for her cables to reach down to us. They even tried their side battery. They said that we picked the oldest, least capable ambulance in all of Pittsburg to ask for help. that's the way our week was going, Luckily, a new fancy ambulance drove in and they had that one jump us. We were told not to turn off the car though - a 4 hour ride home in 2' weather, where I m supposed to stop and ambulate every hour, but not by myself or I will literally fall over. What a disaster. Luckily we found an Auto Zone and the employee tried to help un install the new battery- but the new fan car made that incredibly hard. he was pulling pieces off of her car and when he was done, the car hood wouldn't close on the first try. Oy Vey. But eventually... (at 6:30!!!) we were on our way.
As we pulled out of the parking lot, I got a few texts letting me know that my FB act had been hacked. I just laughed. What else could I do at that point?
We found out that Jackson had been discharge around 8pm too! It was a nice surprise. We would all be home together tonight. Honestly, the thought of it was exhausting to me.
We all slept great that night, to be honest. Mandy will never know how much I appreciate her and all of her help this week. She was the best nurse ever. She made sure my room was straightened, cleared my food, brought me yummy meals, washed my hair, helped me to the toilet. She may have missed her calling.
Here's Jackson sound asleep the next morning, He grew so much in the hospital!
Jenni and Jimmy had made us a fun sign...
That night I was very happy that Jimmy got to have two of his BFFs sleep over. A little bit of normalcy...
Jackson and I both slept a lot and watched a lot of TV over the next few days. By Monday the 13th, we were both sort of standing straight up and walking with SOME help...
On Tuesday the 14th, Jason and I had to drive BACK to Pittsburg to have my follow up appt and get my stitches out. "No sign of infection" they said!!! At least that prayer was answered. I was excited to tell the Dr that I was now hearing ringing in my right ear - I was so stinking excited. I could tell be the look on his face that he was sorry to bust my bubble- "that usually means that it is just a sound of the nerve damage and it is probably dying". He does NOT expect me to get my hearing back. However he is very exited about the movement in my right face. He said that since it healed so far so quickly he believes that it will eventually heal 100% - it may still take weeks/months though. I'm trying to got dwell on my hearing loss, though it really sucks.
Until we were snapping all of these wound pictures, I had no idea that I was so gray in the back of my head:(
I do think that my right eye is getting a little worse at closing and blinking. I even bought a pirate eye patch and sticker patches to help keep it closed, moist and non irritated. It is a statement piece I think...
On Weds the 15th, we all ventured out to ElSerrano. Jaylee and Maria were leaving the next day. My taste is also altered by this facial fiasco. ( and my right eye doesn't really cry!) so dinner was just OK to me. I also had a terribly hard time hearing everyone at the table. My hearing in my left ear is VERY heightened, so I could hear all of the background noise, people chewing and plates banging, but it was difficult to zone in on the conversation- I find myself reading lips a lot. It is crazy how much better Jackson is doing! He's still having post op pain and missing school, but he's doing quite well. He already says that he can feel his right kidney chronic pain less than pre-op!!!!!!!
On the way home we stopped to show Maria Jason's banner - it's never a good photo moment at night! Having his sisters come out to help and be with him was SO GOOD for his soul!!
And then, before I headed back to bed, I had us take a family photo. I wanted one of all of us with our new "look". Boy did it drive me to tears!!! It's hard to be just thankful that I survived sometimes. I HATE my face. Of course Jason s=just tells me how beautiful I am and how he things my crooked smile is now a cocky smile. But that is not how I feel.
Jan 21: Jackson headed back to school! It was a 2 hour delay which helped ease him back into it. I wore real clothes sweatpants and a t-shirt) to get my bloodwork today! I walked too... no wheel chair! I put in earrings too. We are getting back to 'life"! After school though, realized that a stitch is sticking out of the hole where is drain was. "It will dissolve- don't tug it" the Dr said.
Jan 22: I haven't been in pain so I started lowering my Gabapentin. My right ear feels full" and is constantly ringing today. It's not really annoying though and it is-hidden by background sounds. I may have POSSIBLY heard through my right ear when I tickle inside my canal. Hopefully I'm not hearing it though my bones on my left side. Jenni and I ventured to Tomato Pie for lunch - it was weird having to tell a stranger (waitress) that I am deaf on the right side. I am physically moving quicker now, but I'm still very and easily dizzy. Nick sent me cookies from Hawaii!
Jan 24: Jackson woke up early in the AM with UTI s/s - frequency and dysuria. We were all devastated. After Jason and Jackson left to CHOP ER, I started with a dull ache behind my left shoulder blade. Did I sleep weird? Did I throw another PE? Lucky I didn't too feel ill or short of breath. My family Dr saw me right away and decided that I did not need a PE work up. He thinks that it is pain from the previous PE, pain caused from having a PE recently or possibly a new one, but we would just treat it with Coumadin anyway. So, unless I need Emergent Medicine, I just keep up with my Coumadin. Ok then! Jenni took a funny video of me dancing in the wheel chair at the Drs... here's a screen shot.
I'm still easily dizzy but am pretty independent now. My right ear has felt full all day and there's been a constant louder static noise all day. It's only annoying if I concentrate on it. I'm stretching my neck pretty well now. My wound is healing so nice - Meg even came over today to give me a haircut around it.
Jackson did not get home from the ER for hours! They are treating him for a UTI (NOT kidney infection!!) "just in case". The US and abdominal X-ray did show that his stent moved from his kidney down to ending in his ureter. Hopefully his symptoms were just caused my the stent irritating him. We see Dr Shukla in 2 weeks to decide he will replace the stent for the remainder of the 12 weeks, or if he will just pull it out early. Im worried that him playing his beloved Guerrilla Tag had something to do with it slipping down.
Jan 27: Jackson's urine culture is NEGATIVE!!! SO we can stop his antibiotic. Whoo Hoo. He is feeling so great - no "UTI" pain, no post-op pain, and NO CHRONIC KIDNEY PAIN!!!!!!
Jan 31: Tomorrow is a new fresh month for us and we are excited for it! Jack is pretty much 100%- still no pain from the stent slipping down, I am moving about nicely but still get easily dizzy and feel like my vision doesn't keep up when I move my head at all. Im keeping busy around the house with chores, but I am following my restrictions closely (no bending at the waist, no lifting more than 5 lbs). My wound looks almost healed and there is no sign of infection. My neck is pretty comfortable and not too tight. My lord thinning is in Coumadin's therapeutic range at 2.7 so don't have to repeat my labs for a whole week. Jennibelle is driving me all over, so we celebrated with breakfast.
She leaves us on Feb 10... the LA fires are pretty contained now and she wanted to be back for Day since she's been talking to a fellow missionary.
I'll only update the blog now if anything crazy happens:)
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