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? 

ER-veins in her feet??

Sierra woke me up at 3:00 with pain in her right side/hip:back.  Not new pain-

Same thing she has been dealing with for a few days.  She had thrown up 6 times between 11 and 3.  Brought her to the ER just before 4am.  Same doc as the other day.  He did better today. It was awkward to address that in person.  Anyway, dilauded and phenergan for the pain. They had to draw blood and the poor phlebotomist had the hardest time.  Sierra is really hard to stick but tonight was extra hard.  He looked for veins In her foot!  

No luck there either, two more sticks in the arms (four total) and he got the blood he needed. She feels so much better.  The ER is not the answer but it is our only option while we get this worked out.  Praying that Doctor Lattif gives her some good relief on Thursday.  Also the ER doc suggested we see a GI doc. I had been thinking about that for awhile.  One of her blood tests came back weird.  She has pancreatitis. Inflammation of the pancreas.  It can be caused by all different issuers mostly you would see it in someone with a drinking problem.  Gall stones can cause it too.  GI doc here we come. We will add that to our list of people to see. :) 

She is strong

This is the second "medical post" that I put on our family blog.  It has been a long week.  From now on I will post all of Sierra's info here.

2 posts in 2 days.  A record.  Sierra slept last night.  A huge blessing.  She didn't sleep really well but she did sleep.  I got about four hours before waking up and not being able to get back to sleep before it was time to get Haylee up for school.  Took Haylee to school, came home and Sierra was awake so I made her breakfast. In the process of making her breakfast I dropped the yogurt and it hit the floor and splattered all over and also knocked a shelf out of the fridge. Got that cleaned up and as I was putting the shelf back the glass jar of olives fell off the shelf and broke spreading oil and glass all over the floor. The bonus of that is as I was on my hands and knees cleaning up the glass I realized the good news that there was more yogurt under the fridge.  *sigh* I was DONE with today by 9 am. I made Sierra lunch so she could rest as much as possible. I needed to spend some time at the thrift shop so I listened to some conference talks and got ready to go.  I prayed on the way to base and cried as I drove and poured my heart out.

I got myself together and worked at the thrift shop for a few hours before I get a text from Sierra stating she had thrown up in my bathtub.  I decided I needed to call the pain doc again (the old one since it's the TPI's that they did that are hurting) they kindly said go to the ER.  A little less kindly I said that is ridiculous.  I cannot take her there everyday. What else can we do.  Doc A said he guessed he just can't help her and we needed to talk to her PCM. Really??? So frustrating. I called the PCM and left a message.  About that time I remember I have a cousin who has shots of Zofran at home that she injects when she can't keep pain or nausea meds down. Sierra talks to her PCM and they suggest doubling her current dose of nausea meds. (Seriously? She has been puking from pain for YEARS and just now you decide to let us know she can actually take a stronger dose of meds. Grrrrrr. So frustrating!!!). Her PCM tells her the pain doc will prescribe those meds. I call the pain doc back and she says no he won't prescribe that.  He never does. The PCM needs to do it. I hung up on her.  I am not proud of that but I was beyond over the whole situation. NO ONE will help us.  No one cares that Sierra is suffering so greatly.  Sierra just took two pills instead of one of the nausea meds.  Joe, Haylee and I headed to the first football game of the season.  Sierra stays home to rest.  While we are gone she throws up three more times. I get home change clothes and re-stock our bag for the ER.  (yes we have an ER bag, it saves us time and I keep stuff in there in case we are at the ER for 7 hours or get admitted)  This whole situation is crazy.  I refuse to believe that this is our only option but at the same time what are we supposed to do.  She is so tired of being in pain.  Something has got to give.   I hope the days between now and the first go quickly. We need to get the new pain doc in the game quickly.  We are losing this battle a billion to three and it really sucks.  So, so much.

Watching her suffer is breaking me into tiny pieces. I am running out of super glue to hold us all together.  big breath.  Hold on. One more minute. One more hour. Hold on. 

ER

This is a post from a few days ago that I posted on our family blog because I had not taken the time to set this up yet and needed to write.

I have been wanting to start a medical journal/blog/history all about Sierra for awhile now.  It seems I can never find the time to sit down and write. We have been to the ER twice this week.  Sunday night and Monday night.  Sierra had a terrible migraine that was causing her to vomit repeatedly.  Two nights of sitting and waiting.  The first night it took them about 3.5 hours to get her treated; the second night it took 6.  We waiting for two hours in the waiting room for people to go ahead of us who were laughing and talking, getting snacks out of the vending machines, watching shows and doing homework on their laptops.  Sierra had her head in her hands, eyes covered and a barf bag in front of her.  The ER is a tough place.

Monday during the day -before our second ER trip- brought new hope.  Sierra was finally going to have trigger point injections in her back and her legs.  She had been waiting a patient through her pain for months.  Her pain doc is lazy and a drug pusher, he does not listen to her at all.  He is not into other forms of pain relief.  We have not been happy with him but were trying to stick it out.  I have no idea why.  Why do we do that to ourselves? Why can't we say  "You are not listening!! Please listen closely so we can work together to get this under control." Sigh. Trying to be positive and hopeful and nice does not always pay off.  Giving the doc the benefit of the doubt is not always the right thing to do.  Anyway, when we first got to the docs they put us in an exam room where we sat for 15 minutes before they came in and told us the injections had not yet been approved by our insurance company.  I was surprised because she has had injections before.  Sierra was so frustrated and sad. By the time we got to the car she was bawling. I called the insurance company right away.  After the dozen and a half phone prompts I was able to figure out that the injections HAD been authorized. Back into the hospital we go.  Got the injections and headed out.  Monday evening her headache was bad bad bad, side note we told her pain doc about the ER trip the night before. He didn't address it at all.  His answer to everything is "yeah, yeah, yeah, ok" Dumb. ended up in the ER for the second time -that was the six hour night (got home just before at 4a.m.) 

Thankfully I didn't have to work so i went to bed.  Tuesday Sierra complains of terrible back pain.  She has had injections before and not felt this way.  We rest her, try heat, ice, meds etc....no pain relief.  The good news is her headache is better.  Wednesday comes and her back is still out of control painful. We call the doc to ask if this is normal.  Sierra talks to a nurse and she reports that the doc "isn't going to give you more medicine." Uh that's not what we asked. We asked if it was normal.  She says the doc said if she can't take it we should go to the ER.  What kind of answer is that??  We don't want to go to the ER. Why does her back feel like it is seized up? What should we do?  No answers.  Frustrating does not begin to cover it. Thursday (today the 25th) we had a scheduled appointment with a new pain doctor at the university of Kansas hospital.  I almost cancelled the appointment because I didn't want to seem like we are drug seekers but after the bad TPI's on Monday I decided we needed to get a second opinion.  We saw Dr. Lattif (reason four thousand for a medical blog to keep track of all the doctors and procedures.  Seriously it is a billion) Dr. Lattif was awesome.  Super awesome.  He took a lot of time with Sierra.  He listened closely and did a thorough physical examination pinpointing the exact muscle groups that are bothering her in her back and legs.  He changed a couple of her medications and is going to do TPI's on September 1st.  We were very pleased with our plan going forward.  This evening still Thursday...Sierra is crying in pain.  I have no idea what to do.  No. Idea.  I am tapped out.  Absolutely exhausted.  I got her in bed and tucked her in.  I told her I would sleep in the basement other her.  I will sleep in a chair outside of her room. I have an orange bulb in the lamp.  It gives off a warm glow.  I am at a loss for what to do.  Got on my knees and prayed for relief for Sierra.  For her to find the strength to endure it. For the Lord to carry her through.  I am trying, I am weak.  Sierra is a warrior. 

What is EDS?

Welcome to Sierra's new blog.  I have decided we needed a better and online way to track her medical stuff.  There is a LOT of stuff.  Sierra suffers from Ehlers Danlos Syndrome Type 3 which is the hyper mobility type.  

Here is a quick description from The Ehlers-Danlos Society website:

"Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees) and small (fingers, toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint dislocate frequently. The skin involvement (smooth velvety skin with or without hyperextensibility) as well as bruising tendencies in the Hypermobility Type are present but quite variable in severity.

Chronic pain is a well-established and cardinal manifestation of Hypermobility EDS and it is common for pain to be out of proportion to physical and radiological findings. The origin of the pain is not clearly understood, but some of the likely causes include muscle spasm (tender points are sometimes present) and degenerative arthritis; neuropathic pain is also common.

To date, there is no distinctive biochemical collagen finding identified for the majority of Hypermobility cases. The Hypermobility Type of EDS is inherited in an autosomal dominant manner."

It is a fact that 100% of patients with this type of EDS suffer from some type of pain.  100%.  And yet the large majority of doctors have never heard of EDS.  I will write more about Sierra's story and her diagnoses and how that came to be later.  For now I have medical info to journal about.  Thanks for reading friends.  And please pray for Sierra always as she fights to find the strength to endure her pain.