New doc in a small town

Saw an internal medicine doc yesterday.  Not going to make this post long as I need to get some sleep.  

We saw the new doc for a second opinion, here's how you know you live in a small town....

Our new doc owns our house, we have been renting here for almost 18 months.  We deal with a property manager who owns the local performing arts studio, used to live across the street, and is also the mayor of Warrensburg.  Lol.  Small town living is the best! 

Dr. Hasans nurses raved about him.  They assured Sierra that he was not your run of the mill doc who treats all patients the same.  Good news, if it is true.  His nurse also told us he is a genius with a photographic memory who only needs to sleep three hours a night.  He is on call for his patients 24/7 365.  Amazing news, if it is true.  When doc H came in he started from her stomach issues and worked his way out.  He was amazing.  After making a plan for each issue he would say "what else?" And go on to the next thing. He also told Sierra "You don't need to go to the ER anymore.  If you are hurting you call me and I will help you.  24/7 365." He seems very committed to his patients.  Maybe he is who we have been looking for.  Wouldn't that be something if he is?  We have seen dozens and dozens and dozens of doctors and not only do we find a great doc in this small town but it turns out we live in his house?  Lol.  Sierra and I both left feeling genuinely hopeful.  We always have hope-most of the time.  I am a positive person and the opposite of hope is giving up. Which isn't an option.  This time though....genuine, real hope.  Only time will tell. 

Side note:  dr. Hasan said her PIPA test came back normal.  Her issue isn't her gall bladder.  He thinks it's her stomach.  He is scheduling an endoscopy.  He also ordered X-rays of her back.  Her back has been hurting for years and he is the first doc to want to take a look further than just trying to treat her pain without knowing the full story.  

Pippa test

Today Sierra had her PIPA test.  That test checks the function of the gall bladder.  No results yet.  We see an internal medicine doc tomorrow.  Not sure if he will be able to help but we will see every doc until we have to.  In other news doctors offices and insurance is frustrating.  Here is Sierra's fb post today...

"*schedules a doctors appointment last week* 

me: So, I don't need a referral right? I'm all set?

Them: Yup! See you next week! 

*cut to: today, less than 24 hours before my appointment*

~ring ring~ 

Them: Just calling to confirm your appointment for tomorrow.

me: Great! thanks, I'll be there! 

*ten minutes later*

~ring ring~

Them: Yeah, we're going to have to cancel your appointment because you never sent us a referral from your doctor. 

me: You said I didn't need one????

Them: oh...well...*proceeds to make excuses and blame me for this happening* So you'll need to call them and sort it out.

yeah. ok. I'm feeling very very very not happy. I'm over stupid doctors and stupid receptionist and being in pain. I'm not seeing you guys because I think it's fun or because I'm bored and needed something to do, I'm seeing a doctor because I'm in so much pain that I'm going to the ER three times a week. I am appalled at how difficult it has been to just see a doctor to get an opinion about what could possibly be causing me this much pain. I'm tired, I'm in pain, and I'm over it."

My poor warrior is so done.  Please pray for her to find the strength to keep fighting. 

Abdominal ultrasound

Sierra had an abdominal ultrasound today at WMMC.  The doc called with the results and there are no stones in her gall bladder.  Good news, but not. For the simple reason that we were hoping to find something really clear.  Tomorrow she has a pitpa or pippa test to check the function of her gall bladder.  We will see....

PCM, ER

Sierra wasn't feeling well last night or this morning so we called her PCM and got an appointment with the PA Hayley.  She was able to schedule the abdominal ultrasound we have been needing.  And gave Sierra some more nausea meds.  Nothing for pain though which was ok because we didn't expect that but it doesn't mean Sierra isn't actually in pain. We waited a couple of hours after the doc and Sierra tried to eat something.  That went ok but her pain was out of control. So off to the ER we went to see our friends.  Sad when they know our faces/names.  Saw dr. Skinner again, he drew labs, all normal, and gave dilauded for pain and Zofran for nausea.  I am really wondering if Sierra has absorbtion issues.  Meds go so much better for her when given through an iv or shot.  Next thing on our list to check out.  

This pic is once the meds started kicking in.  I am thankful that iv pain relief works.  Hate going to the ER over and over.  Stay strong. 

Sierra posted this on her fb today 9/7/16

"All I am doing is living with my disability. People say that they admire my strength and my optimism in the face if my illness. Just remember: the only alternative I have is giving up, but I will never stop fighting for my health. I will never stop fighting those who try to tell me that I am young and skinny and therefore "healthy". My invisible illness puts me through a different battle every day. My strength comes from years of practice, believe me, I wasn't always this amazing 😜 But I think that over the years I've earned the title superwoman 😉 thanks to all those who've lent me their strength until I was able to find my own, you're all my favorite super hero."

Home away from home

At the ER again.  Sierra is still having severe abdominal pain.  She is throwing up and having a bit of diareaah (sorry, I know that's tmi for some of you but we need to keep track of this stuff) she was crying and miserable once again late at night.  We called the nurse line and her on call doc and both advised us to head to the ER.  

To the ER we went.  Glad to hear Dr. Skinner is on tonight (he is the head of the ER department) they got her in quickly and got an iv started in her left hand.  Nurse (Kendra who was awesome all around!!!!) got her in one try.  Almost a miracle.  They did blood work and advised us her lipase levels were up over 800 the other night which is why she was diagnosed with pancreatitis.  Tonight her lipase was at 33 crazy low.  Doc said it is almost unheard of for the levels to change that quickly.  Everything that is "this almost never happens" or "I have never seen this before" is Sierra.  Honestly this girl is a medical marvel.   Sadly it is way less fun than it sounds. If her lipase had been high it would have been an automatic admit for pancreatitis. We were kind of hoping for that. Her pain is well controlled in the hospital. But it wasn't so the doc suggested a ct scan with contrast.  It was 2am at that point and we are looking at four more hours.  I have been up since 4:45 yesterday.  It will be a 24+ hour shift for this mom.  Sierra is still awake too.  Wish she could get some sleep. So we wait.......I went home and got her contacts case (note to self out an extra case and solution in the hospital bag) and her glasses, grabbed her some socks too -another add for the bag-- I updated Joe and headed back to the hospital.  Got back and she was drinking the contrast. Got her settled and went out and got about 90 minutes of shut eye in the car. She texted me when they were taking her in for the ct and j went back in. I went home around 5 to get Haylee up and off to seminary but Sierra texted me not long after I left to let me know she was getting discharged.  The ct scan didn't show anything.  Good news but not good news.  Wish we knew what was going on but glad they don't need to admit her.  Home again, home again jiggity jig.  We thought she had an appointment with her PCM at 9:45 but they just wanted labs.  Luckily we had the paperwork from the ER so they just made a copy and sent us home -frustratingly unhelpful.  We will call KU Tuesday to schedule her ASAP with a GI doc.  Praying she gets better through the weekend somehow.  We are done going to the hospital!!!!!!!  

Trigger point injections

Sierra had trigger point injections today by Dr. Latif at the university of Kansas hospital, Indian creek campus in Overland Park, Kansas.  He was great.  Our appointment was at 9:45.  He came into the exam room around 11:00.  He has a great bedside manner.  Right before he did the injections the nurse came in and said they hadn't pre-authorized the appointment correctly.  She wasn't sure if the TPI's would be covered.  Doc L said if they weren't covered he would write them off!  His exact words were they would be "free" he is a great doc.  I was thankful the TPI's could be given today.  (9-1-2016)

Dr. L massaged the areas he injected and was just all around awesome.  Sierra is sore from the injections but her main complaint is still her abdominal pains. What the heck is going on with this kid?