Spoonie Va-cay...(Part VII)

Tuesday, December 5th

Spoonie Va-cay...(Part VII)

[Colemans...Dressing Change...Twinsies...Mom's Bday]

Pastor and Becky Coleman

It was a very special day when Pastor and Becky Coleman drove the  entire way out to Pittsburgh to visit me.  My church family has been incredible and such a huge encouragent and support.  Many nurses, hospitalists, doctors, care nurses, medical assistance, even housekeeping commented on the many cards and overall "vibe" of my room.  There were many opportunities to share the Gospel by just sharing my twisty-turny-bumpy-lump and super-duper-cray-cray medical journey of how God has used my health to stretch me.  But more of that in another post...

"Jill, a selfie stick would make this easier..." --Pastor

Weekly Dressing Changes

Every week, my PICC line needs cleaned and it is quite the procedure.  UPMC Pittsburgh put a new protocol on how to change a PICC dressing.  It is painstakingly specific, and it made me feel like I had some super contagious disease.

Alexis and Lindsay (favs)

 I felt very official...

Visit with my favorite Twins!

The biggest surprise was a visit from my gymnasts.  Back when we were all way younger and smaller, I had the privilege of coaching these two amazing girls... Alex and Tori Misitano.  Even though it had been ages since we've seen each other in real life, technology had kept us connected.  SO...yay for technology...snapchat...text messages...facebook...and the instagram!!  YAY for that too!!  They both live and work out in Pittsburgh, and when they found out that I was admitted, they insisted on coming to visit and cheer me up!! 

They won't be able to understand the huge impact their many visits, text, and snaps meant to me.  They have both grown into loving, cheerful, and thoughtful young ladies. *tear*  Tori, since she is basically a physical therapist, took me out for walks.  Oh, funny story...we didn't really know where to walk...so we got in the elevator and randomly chose a floor, got off and walked around on the floor, got back in the elevator, and picked another floor.  Sometimes I will loudly laugh thinking of us giggling on the elevators while we debated what floor to pick.  When the doctor asked us what floor we were going to, but we weren't ready because we were "still deciding" what floor to pick.  (I think he thought we were cray-cray).  We did stop on floor 12 to visit my nurses from my hospitalization a few months earlier.

It was incredible catching up with them and learning all about their "adulting" life.  *sniff*  I now know that I can visit Pittsburgh any time knowing there will always be a place for me!

Alex...Coach Jill...Tori

Feet Picture

Happy Birthday, Mom Finnegan

On Tuesday, December 5th, 2017, Mom Finnegan celebrated her birthday.  Although, it seems like the older you get, the less important birthday's mean.  Our traditional Adam and Jill birthday song was quite difficult since I was in Pittsburgh, Adam was in Huntingdon, and Mom Finnegan was in Ohio.  What pray tell was the fix?  Adam invited me to a video chat room (because Skype wouldn't work).  Next I recorded the video to my phone and then we would send Mom Finnegan the final result.  

[Please note the HUGE technological delay]

Again, thanks for all the support and prayers.

THE END!!!

Spoonie Va-cay...(Part VI)

Monday,December 4th

Spoonie Va-cay...(Part VI)

[Waiting...Reading...PTL]

  More E-cards 

It was special to see everyone's personalities through the e-cards.  So many to read and cheer me up.

Christmas Card...

These two I'm not sure who sent them...

 Yes, I even got a Happy Birthday Card.
Many people asked... "Is it your birthday!"
"No, I just have weird friends!"

 Try this one...

 


 True Story...if I was allowed to eat! (:

This one always made me laugh..

Ostomy Nurse

 As surgery day approached, it became real as various teams came to visit and give their advice and recommendations.  An ostomy nurse was one of those visitors.  Her job was to draw a polka dot where the ostomy would be placed. (Polka Dots are my absolute favorite thing in the world, so naturally, I was tickled to have a polka dot on my belly!) It sounds easy; however, it took a long time and I had to do various acrobatic skills.  The goal during this was to ensure that my ostomy wouldn't kink or rub on anything in particular and to trouble shoot different scenarios.

This is the last pre-ostomy picture of my belly...

 Lots of calculations and concentration...

 This makes it official, I guess...

My polka dot...

  This only means one step closer.



 When Heather, the ostomy nurse left, she gave me the skin marker, just in case the dot started to get lighter.  If it started to fade, I was to just color it in a bit.  You have NO IDEA how much I just wanted to write a message to Dr. Watson or draw a buttload of dots (polka dots) all over my belly.  (:  I think they would've enjoyed it, don't you?

Well, surgery was scheduled for December 8, 2017, I was on track for surgery.  Final thing to check off was a clear ultrasound of my blood clot.  They informed me, as long as the clot didn't get bigger or worse, the surgery would still take place. This felt like the longest 24 hours ever!!!

THE END!!!

Spoonie Va-cay...(Part V)

December 4th - 5th
Spoonie Va-cay...(Part V)
[walking, mail & visitors,...]

Walk to the Gazebo

During the "waiting" game, Adam decided to take me for a walk.  Why you may ask?  Adam said that I needed to get out of my room and get the stink blown off me. Surprise...surprise...it was closed, but that didn't prevent us from taking pictures.

Silly Faces

Adam was super excited about this HUGE pulled pork

Mom and Dad Finnegan's CHEERFUL flowers!!

Sunday AM Live CIBC Webcast Service

More walking...

Chilling in the gazebo...

Traditional Gazebo Heart Picture (:

Sweet Sandi stopped by to help us out.  She would take my dirty clothes home with her from the hospital, and then a few days later when she returned for work, she brought a clean basket of close.  This mean soooo much to me since I didn't want to have to wear the same stinky outfits...over...and...over...

Thanks for the silly faces, Sandi!!

Matching "Poopy Emoji Socks"

My favorite Emi-Sue and her two adorable kid-lets.

It was so good to see you Chris and Emily (it's been sooo many years).  You guys are the sweetest family of all time. Thanks for all the random gifts and just for visiting with me. It is a privilege to just call you both my friends.  Hope to see you sooner rather than later!

It was such a busy day with lots of visitors.  Even though it was  a lot of excitement and the door revolving back and forth bringing another visitor at each wave.  SOOOO worth it to see so many great friends.  They all did an amazing job cheering me up and distracting me from the current "poopy situation".  Thanks to all who made the sacrifice to travel up/down/east/west to visit me.  Love the visit and Love You!!

THE END!!!

Spoonie Va-cay...(Part IV)

Weekend of December 1st-3rd

Spoonie Va-cay...(Part IV)

[Waiting...Reading...PTL]

  Waiting...and...Waiting  
The blood clots were hiding my progress for a speedy surgery, so it became a waiting game. Doctors immediately started on a blood thinner therapy.  Plan was to continue thinning the blood, hoping the clots will slowly dissolve or at least not get any bigger. Must continue with blood thinners for one week, at which time an ultrasound will be ordered at least one week.

A special, " Thank you." to everyone that has sent me an e-card or a real card.  It's been a huge blessing to read each and every card.  The Get Well Wall is an opportunity to share my faith.  Please continue to pray as I've established a few good friendships here.

Thanks for my e-cards!!

The hospital mail woman hates me!!




Don't know who sent this to me?

 

PTL = Praise The Lord!

"Thank you" seems so inadequate.  But we want everyone to know how thankful we are for our family, church family, friends, and friends of friends.

We PTL for everyone who took the time to leave a post on my wall, to send a sweet message, text, or snap...you have no idea how much it encouraged both me and Adam.

Thanks Friends!

THE END!!!

Spoonie Va-cay...(Part III)

Thursday, November 30

Spoonie Va-cay...(Part III)

[armpit lump]

 

Armpit Lump

Yesterday my upper arm was a little sore.  It felt like a pulled muscle, but constant pain.  It was so severe, I cuddled my arm against my body to keep it from moving.  The pain started in my upper arm and then my armpit started throbbing, so I knew it was getting worse.  I could no longer put my arms/elbows by my side because it felt like I had a ping pong ball in my armpit that prevented my range of motion (resting my arms down at my side, lifting my arm up in the air, well, basically, and moving of my arm).   After my morning shower, I grimaced through the pain to lift my arms in the air.  Low and behold the mirror confirmed what I had felt already.  There was a HUGE lump in my armpit, which was extremely sore to touch.

 I yelled for Adam, he looked at it and looked at me and calmly said, "Yup, that looks like a lump."

When the hospitalist made her rounds, she examined it. (Remember when I said how sore it was to touch??  EXTREMELY sore!!) Well, she missed the memo about how badly it hurt.  Naturally she began pushing and poking as though she was giving my armpit CPR chest compressions!

She still "couldn't feel it".  Adam got up and gently showed her the lump.

More and more armpit compressions continued and her final decision was, "It feels normal and doesn't feel puffy to me, I don't see a lump."

When my nurse stopped in, I asked her,  "Do you feel the lump?  Or am I cray-cray?!?"

The nurse agreed there was indeed a lump.  She left the room and came back a little later to tell me that I had an ultrasound for my armpit lump later that morning.  (So that makes me think that she talked to the hospitalist?  But that is just speculation.)


Ultrasound pictures...

Can you see the blood clot?
Just nod your head and pretend you see the clot! Haha...
Dx: Blood Clot

The hospitalist came back later that afternoon to tell me that I had blood clots in two major vessels and she needed to start me on a heparin drip.  In my double lumen PICC line, both lines were being used to its capacity.  TPN was running in one line while the other lumen had potassium piggybacked to a bag back of fluids. A peripheral IV was ordered on my left side. After a few sticks ("few" used very liberally), the heparin drip was up and running.  She also put in a consult for Hematology/Oncology)

New IV for heparin drip

That evening Dr. Kiss (Hematology/Oncology) stopped in with 5-6 interns.  I felt all 14 eyes staring at me as the doctor proceeded feeling the armpit lump as I am wincing in excruciating pain.  He was able to feel the lump, it confirmed the ultrasound diagnosis, and he could begin therapy to break up the clots.

*When you picture a blood clot, don't you picture just a small mustard seed or a pea?  That's what we were picturing.  Dr. Kiss said it was a HUGE clot...and boy he wasn't exaggerating in the least!!  The Duplex/Doppler showed the clot starting at the insertion of the PICC Line in my inner bicep of my right upper arm; continuing up my arm, in my armpit, from my armpit up to my clavicle (collar bone) and stopping before the PICC descends down to my heart.  These two little boogers are just massively long!!!  (Did not know that clots could be that long.)

Dr. Kiss stopped my Heparin (continuous IV) and started me on Lovanox (subQ injection 2x/day). He asked me when my surgery was scheduled.  I told him it was in two days. He walked up to the side of my bed and looked right into my eyes and said, "You will not be able to have this surgery."  My heart sank and tears began to weld up in my eyes.  I had been waiting for months to either have this surgery or to get some answers.  I began sobbing uncontrollably, this meant more waiting.  I must have looked pretty pathetic, cause one of the students found me a box of Kleenex to "clean myself up".  The hematology/oncology team left, and I was able to just cry for a few minutes. Adam had just left and it was just me by my lonesome.  I broke down and cried in frustration...Why was this happening? What is God trying to teach me? How can this possibly be God's plan? I'm so sick of being sick!! I am learning now, this is going to be a long lesson.
     

Can you see the lump? 

Picture  #1?   or   Picture   #2?

 Do you see a lump?  If so, which one is it?  Am I cray-cray?

If you picked the first picture....your eyes are better than my doctor's eyes!!

Thanks again to everyone for all the prayers, love, and support.  Just trying to take everything one step at a time.

THE END!!!

Spoonie Va-cay...(Part II)

Tuesday, November 28th
Spoonie Va-cay...(Part II)
[dilation, sigmoidoscopy, get well video]

Dilation Surgery Day

For this procedure, you can tell that it was a surgery day...I don't have any pictures for this day.  Haha...  When they called me from my room, we were oh so very ready. (Mainly, to get it over with and be done!)  

Flexible Sigmoidoscopy, Colonoscopy with Stricture Dilation

A flexible sigmoidoscopy is an exam used to evaluate the lower part of the large intestines.  There is a tiny video camera that allows the doctor to see inside the rectum and most of the sigmoid colon.  Since the sigmoidoscopy examines about the last 2 feet of the large intestines, Dr. Binion ordered a colonoscopy. 

 A colonoscopy examines the entire colon.  The difference between a sigmoidoscopy and a colonoscopy is the areas of the colon they can see.  

Dilation is the expanding or enlarging of a part of the body.  For the past couple years, I've had a stricture at the end of my large intestines.  It started with every year, the doctors would put me out and dilate the stricture (open the stricture). Now, when I say "open the stricture"...I literally mean that they physically rip the rectum open tearing the old scar tissue.  This has been going on for the past couple years, which has caused a lot of scar tissue.  It has gotten to the point where they will do the dilation and one months later...another dilation.  After today's dilation, the doctors and surgeon both agreed that this needed a more aggressive treatment--a colostomy.

Sigmoidoscopy vs. Colonoscopy

 

It's GO Time...

My "Get Well Wishes" Video... ~The Misitano Twins

Special shout out to Alex, Tori, Maggie, Nia, and Kristin!

Miss and Love you all!! (:

After the procedure, I was taken back up to my room.  My bum bum was super hurting and my belly was distended.  It was such a painfully intense surgery.  Next thing to do--wait!!

Hurry up and WAIT!

 

I can't express how much it means to have so many people praying for both me and Adam.  It has been such an encouragement to read through all the posts on Facebook.  Often times I'm not feeling well enough to respond or it may take me a while to get to read them. Know that it will get read...eventually!!  Again, Thanks!!!!

The END!!!

Spoonie Va-cay...(Part I)

Part I

Saturday, November 25th

 [Grammy Hoffman Birthday, Altoona ER]

 

Grammy Hoffman's Birthday Present

 Early Saturday morning, November 25, 2017, we all went over to Grammy Hoffman's house to give her a birthday present.  What do you get a 96 year old lady?  We got her a sweatshirt with a saying that gram says ALL the time.... 

"Call me when your 96 and let me know how you feel!!" -Gram

Special shout out to my sister-in-law, Erica!

(Purple is Grammy Hoffman's favorite color!)

Altoona ER

After we gave gram her present, Adam and I went home to tackle the daunting task of...decorating the house for Christmas.  My pain in my abdomen continued to get worse through out the day.  By 4:00PM, I couldn't get up off the floor.  Finally, the pain got to be severely bad, Adam made the final decision..

...off to the Altoona ER!! 

When we got to the ER, they did a CT scan, labs, and gave me medications. Lab test showed that my potassium was critically low.  The ER doctor said regardless of the CT results, he wanted me to be admitted in order to treat the hypokalemia.  When the CT results came back, the radiologist recommended further studies be done.  However, there were a few possibilities ...Strictures, partial bowel obstruction? Abdominal hernia?

Ambulance Ride to Pittsburgh

The Altoona ER doctor talked with my colorectal surgeon from Pittsburgh and Dr. Watson agreed to admit me onto his services.  They would be transporting me via ambulance. (It's so pathetic that this the second ambulance ride in two months!!!)

 It was too dark to take an "in-the-ambulance" picture.

So this is my lock screen shot

 

Finally arrived to my room...Ahhh...

One of our many walks...Feet Picture

Pam...IBD Connect Specialist.

Sad Face

Apparently, I must have cooties

Me--Distracting Adam from doing his work

After my first shower... Exhausted, but glad to feel clean.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sunday, November 26th

 [spoonie va-cay, hospital/hunting]

"Spoonie Va-cay"

A spoonie is someone living with a physical chronic illness.  Healthy people can't always understand what it's like to live with a chronic illness day after day. By using a handful of spoons, it helps demonstrate how every activity costs one spoon.  You start the day with a certain number of spoons, and plan your day around not running out of spoons.

For example, daily activities that healthy people tend not to think about take tolls on people with chronic illness. Socializing might cost spoons, using the stairs might cost spoons, lifting things might cost spoons, etc.

Va-cay is short for the word vacation, which means an extended period of time, especially one spent away from home or in travel.  A hospital stay definitely qualifies as "an extended period of time"  and obviously far "away from home".  A hospital admission, is a pretty good chunk of extended time... and thus why we say it's my hospital va-cay.

Together = Spoonie Va-cay

Spoonie Vacay = Hospital Admission

Hospital Stay vs. Hunting Season

Monday was the first day of deer season.  While the McCracken family had deer up to their eyeballs, I was stuck in the hospital.  Early Monday morning my GI doctor (Dr. Binion...he also has Crohn's/IBD) stopped in to see me. 

My "God Wink" for the day? Dr. Binion was on rotation for the whole week; meaning... He would come visit me EVERY DAY doing his rounds!!! Knowing that he was going to be in charge of managing my plan of care.  It was such a relief to have a familiar face. It was such a wave of calmness.

Dr. Binion ordered an iron infusion since my levels were low.  In response to the critically low potassium level, they ordered 4 bags of potassium, 2 (40mg) tablets, and 2 packets of potassium powder mixed in juice.  In case you were wondering...it is GROSS!!!!  If you would like to try some, I have a whole buttload of packets (:     Dr. Binion scheduled a dilation surgery and colonoscopy for Tuesday (28th)

They had a very hard time getting my pain, nausea, and yorking under control.  Most of Sunday and Monday was spent holding an emesis basin in my lap and dry heaving.  Upon my arrival on Saturday, they put my TPN on hold.  First thing Monday morning my dietitian coordinator & pharmacist analyzed my lab work.  By using those numbers, my TPN was adjusted accordingly.  The "Jill Concoction" (TPN) for Monday and Tuesday ran without lipids (to minimize my pain and nausea) and they plan on adding the lipids back to my normal TPN "Jill Concoction"in after a few days.

When we first started talking to each other and I came down with shingles.  Adam researched and studied everything there was to know about shingles.  When he told me how much he "learned" during his googling sessions.  He seriously found treatment options, signs and symptoms, how long the virus lasts, what the difference is between a virus and a bacteria, and what medications would work best.  I knew that if Adam was researching and learning all about shingles, he could handle my Crohn's.  Shingles was a little "blip" in my medical life; yet he really put his whole heart and soul into knowing everything that he could learn about my little "blip" called shingles.  

 Adam has been so great though everything.  During the 5 hour wait for the ambulance, Adam sat beside me, rubbed my back, touched my face, but never once did he complain at all!!  It doesn't register to me why he picked me to be his wife.  How did I get to be the luckiest girl in the whole wide world?  I can honestly say that God knew what He was doing when he made Adam for me.  Zero regrets.  Looking back at our relationship and how it has grown, I can't remember life without him. There are many times that Adam has had to miss different social things so he could stay home and take care of me.  He's missed a lot of work on my account, but his work has been super amazing and let him do his work "at Jill's home" (Haha..my home is the hospital, apparently.) 

Whenever I'm in the hospital, it's very hard for Adam.  Hospital admissions are worse on the family rather then the patient.  There are countless hours spent driving back and forth from the hospital, many a sleepless nights on the soft/comfortable recliner chair, staying up till all hours of the night, and all the crying and comforting in between.  My brain still can't compute that Adam picked to marry me.  It is very difficult for me to understand that he would chose me AND my Crohn's. He could pick ANY girl...pick a HEALTHY girl... As you can see, I can't seem to wrap my head around this!!  All I can do is thank the Lord for my Baby Love.

Adam is the best thing ever...

I love this guy...

Thank you to all who so faithfully pray!!

THE END!!!