Our broken hearts

I'm not even sure how to really say where we are on our road right now..  our hearts are hurting, we are trying desperately to process everything.
Madilyn had a sedated CT scan a few weeks ago to look for erythropoietin secreting tumors.  The whole experience was terrifying.  We went in expecting a simple sedated scan with contrast and apparently the contrast is different than the one used for MRI's or her feeding tube changes and she had a severe allergic reaction to it.  A, she couldn't breathe and covered in rash and hives, kind of reaction to it.  When she came out of the scan and was through the roof agitated they said they only brought her out because they needed me to help calm her down.  Her heart rate at this point was around 200, which even for her is crazy high.....  in the process of trying to soothe her they filled me in on her allergic reaction and the fact that on the CT scan it showed that her lungs are full of something... there's a spot in her right lung that they were unable to clearly determine if it is a nodule or mass of some type....her bronchial tubes are significantly smaller on one side... and her right lung is partially collapsed.... yes, epic mommy sobbing meltdown ensued following this news and many many times since.
We are scheduled now for a bronchoscopy for our pulmonary doctor to go in and get a really good look at what's going on in her lungs.... then they are going to flush her lungs with saline (aspirate her) and catch the backwash to be sent to the lab for testing.  They need to know if it's mucous, bacteria, whatever it is... then they are going to clean out her lungs via suctioning.  Yes, the whole thing is as horrible as it sounds and her recovery has the potential to be incredibly rough.... we are terrified... we have to know what is going on because her body is signaling via her blood that it is not getting enough oxygen to support it. 
We are experiencing episodes of extreme agitation and times where she literally stops what she's doing and puts her little hand on her chest and lets out this little noise that sounds like she's saying "ooh"... she will also take my hand and place it on her chest and scream at me... she's trying to tell me how much pain she's in and it's heartbreaking.
In the process of trying to absorb all of the reality with the lung issues her hematologist informed me of where we are at now..... papers are being submitted to insurance for approval for a specific genetic test.. it's the JAK2 Gene Mutation test.  Since there are no tumors emitting the high hormone levels there's one of two things driving it...  it's either the gene mutation or it's a problem with her bone marrow... neither one is a good option and the only treatments that we are aware of are not an option.  The only treatment is chemo and a stem-cell transplant which she would not survive and we will not put her through.  We do however have to determine the source in order to know timelines, comfort measures and therapeutic treatments. 
Madilyn's at triple the normal risk currently for heart attack, stroke and blood clots and that's before any of the lung issues are even figured out or included in that risk factor.
This is sooooo overwhelming for us to try and process.  We always knew that every day with Madilyn was a gift and that her life expectancy wasn't very long but to have come this far and now actually have a Doctor start talking comfort measures sucks the wind right out of your sails.  We may get several more years, the truth is we don't know.  What we do know is that her little body is under extreme stress and we are trying to figure out what to do to help her.
I'd love to end this with some catchy little upbeat phrase about those pink fucking shoes but at this moment in time all I've got is a broken heart and those pink fucking shoes....

Choices

It's bright and early Monday morning and I'm laying here thinking and drinking coffee.
This is a lifestyle, not a diet or a fad.
It's not a moment in time and it's not about being perfect all of the time.
It's about being able to do the things I want to do without feeling like shit all of the time.
It's about my knees and my back not hurting and having the energy to keep up with the Sasshole and all that life with her entails.
It's about not wanting to explode over the top of my jeans and about feeling good in a swimsuit.
It's about taking the time to put my mental and physical health FIRST!
It's about learning to make better choices.
It's about learning what fuels my body and what doesn't.
It's about wading through your own bullshit and excuses to get to where you want to be.

It's about choosing to deal with the feeling no matter how hard.

It's about choosing what's going to fuel my body rather than what's going to taste good in the moment.

It's about choosing to move my body daily.

It's about choosing to eat the fucking salad.

It's about choosing to drink the fucking water.

Anyone who knows me knows that my first choice to avoid feelings was alcohol.  I kept all the things locked inside and I drank instead.  I was the life of the party.  I was also so emotionally broken I didn't know what else to do.  Dealing with the actual feelings was "too hard" so I drank instead.  When the time came around that I couldn't use the alcohol to make me feel better I turned to food.

I would literally eat until I was so stuffed I thought I would vomit if I had to burp.  I couldn't have sex with my husband because I was so stuffed I would puke.  I loved my husband and children beyond measure but hated my life so much I didn't even know what to do with it... so I ate.

I think I'm so obsessed with My 600 lb Life because that's the path I was on.  I was watching it the other night and Dr. Now was talking to a patient that blamed everything on food addiction, they claimed to have no control (I've been there) and he said "Food addiction is just like any other addiction, it's a choice.. it may get out of control but ultimately it's a choice and now you can choose to accept responsibility and walk the hard path of getting healthy or you can choose to die".

I'm a firm believer in that every single thing you do from the moment you wake up in the morning is a choice.  You can blame whatever you want, have any excuse you want, but it's a choice.  

You can choose to spend your life being a victim and crying oh poor me or you can step up and do the work and feel the super hard feelings and be a survivor... a warrior.  Life is not easy for anyone.. we all have baggage..

I have lived through rape, domestic violence, verbal abuse, depression, anxiety, physically debilitating illness.... I have also survived, sought counseling and learned to deal with the really hard things rather than eating or drinking them.  

I am not perfect by any measure.  I have learned to love my flaws... I look in the mirror every day and say something positive about myself rather than beating myself up and letting my inner mean girl out.  

We all go through different seasons in life.. sometimes it's great, other times it's good and sometimes it just sucks... I'm in a season of suck right now.. I started going back down the wrong path with some food choices and lack of consistency with working out... I feel it.  I feel like crap, I'm more tired than normal, my back hurts.... and so does my heart.  I'm scared of the path we are going down with Madilyn... but neglecting myself won't help that in any way..

I woke up this morning and this blog started as a post to my Fitfam girls to get them motivated and as it kept growing I realized it was just something that I needed to share for everyone to see... some things just need to be given life.  

I want you to know that you are worth it.

The impossible can be done.

You are beautiful.

Your life can be amazing.

You can do hard things.

You can overcome.

You can be happy.

You are worth loving.

You are a survivor.

You are a warrior.

Most importantly.... You are not alone.

Now pick yourself up and go buy some pink fucking shoes and move your ass!

those shoes.

We are ready for Tuesday and wherever the road may take us!!

The Road

The most memorable thing a doctor ever said to me when my degenerative disc disease was at it's worst was "emotional pain can manifest itself in physical ways".  This has played over and over in my head a million times over the past 4 days as I struggle to get up. 

Madilyn's vomiting got to the point on Monday that I couldn't take it anymore and I messaged our care team to request a placement check on her feeding tube.  That message escalated super quick into phone calls from them and 3 of our 17 specialists being involved... and off to the ER we went.  Can you imagine what it's like walking into a Children's Hospital emergency room with 40+ patients in the waiting room and multiple in line to check in and when they ask for her name and hear it you are immediately jumped in front of every single person there??  We heard "it's her.. get her stats and get her into a room..now"...  perks..yes... reality.. she's too fragile to have her exposed to all of that and she escalates so quickly it can be dangerous.  Their main concern was her shunt, it was never ours.  They did a quick brain MRI and shunt series x-rays and it looked fine.  The neuro doc came in and talked to us and it went from "we don't see an issue with the shunt"  to "I'm going to check something" to a nurse telling us they were admitting us under the hospitalist so all bases could be covered....  5 hours into this ER visit, Scott had just left and we were waiting for our escort to our room and it happened.... Madilyn coughed and started vomiting blood all over the place... everything stops at that moment.  I buzzed the nurse, she came in and went running out to get the doctor... they tested her vomit and it was definitely blood.  The transport upstairs was canceled and they had to figure out a new plan asap.  Come to find out we had weaned off of her omeprazole for reflux last summer and it was back with a vengeance.   Meds were started and we were admitted for IV fluids because she was dehydrated from all of the vomiting and her heartrate and blood pressure were through the roof. 

It was 1:30 am before we were brought to our room on W11... they had given her sleep meds at midnight in the ER but there's no sleeping when she's constantly being poked and checked.  Once we were in our room it starts all over again with the team on the floor.  Our inpatient stay did not start on a good note when the first thing the floor doc said was "it's probably just a mystery virus"... set this stressed out momma right off.  I told him that their years of "mystery viruses" were never that.. they were a formula allergy and nobody would listen to me and then it was Secondary Adrenal Insufficiency ... both of which almost killed her and nobody listened until I screamed and shouted and went toe to toe with doctors.  I told him that there is nothing wrong with her shunt and she does NOT have any fucking virus and that something has been escalating since early October and they needed to figure it out and that I didn't think that would happen inpatient.

We slept for only 2 hours that first night and then they came and woke her up again.... by the time the hospitalist team came for rounds and said it's probably just a virus I couldn't keep quiet... 6 doctors and 2 nurses in the room plus our Special Needs team NP and I piped up with "I call bullshit"...literally... talk about stunned heads turning... I told them exactly how I felt and why I felt that way and that I didn't think they'd solve anything there and that we have an upcoming appointment with Hematology on Tuesday because of some labs that were off (and have been trending more and more off for 3 years).  I've questioned some of those labs multiple times and always get told "It's not far out of the normal range" or "It's just Madilyn being Madilyn".... I'm so frustrated at this point that by 9 pm on night two I told the nurse to get the stupid GI doc and get us discharged because we were at the point that we'd be up for 40+ hours and her behaviors were escalating quickly which would just land us in more trouble.  By the time the doc came I had Madilyn sleeping in her stroller, which is a HUGE safety no-no there.  He couldn't and wouldn't discharge us because she was having some issues urinating and they couldn't figure out what was going on so in true sleep deprived mommy fashion I threatened to hurt anyone who touched or disturbed her or anyone who tried to make me put her in the bed.  Definitely not my best moment but he complied.  They only time they could do anything was if I hit the call button.  I did but only once at 1:10 am to tell them they had 10 minutes to check her vitals and get her another round of sleep meds (she was already connected to a continual pulse ox monitor so if anything bad happened we would know)... we were not bothered until 7:30 am when the Hospitalist woke me up.

I apologized immediately for my tirade the evening before and he immediately told me that he understood.  He said they saw how quickly she went from miserable to stable to going in the wrong direction because as soon as she was stable her anxiety and stress levels escalate quickly.  He said they had a lot of things to check on but knew they needed to get us out the door as quickly as possible. 

A few hours later when the docs were in the room the on-call Endocrine doc piped up that she had questions for me... after talking for a few minutes she said she had serious concerns about Madilyn's parathyroid and thyroid function.  Her body is consistently making too much calcium... and that is caused by the parathyroid malfunctioning.. she ordered tons of labs.  She also clearly stated that Madilyn's would be a genetic cause because she does NOT have the cancerous tumor that parathyroid problems typically start with.  Phew.... someone finally said it.... for over a month now we've had in the back of our brains that problem may be cancer of some type...

When you are referred to Hematology the way we were in November and see and appointment show up with the Oncology lab it makes your heart stop.  A typical child has a 1 in 4 chance of a cancer diagnosis... a child with a genetic abnormality has 4 times that risk and Madilyn has multiple genetic abnormalities.... for us it's never really been a case of "if" that most parents don't even think about.. it's always been a "when"....  for the moment we're breathing a little easier.  We'll find out more at our appointment on Tuesday and after all of her labs are done.

The road we are potentially on, if labs confirm it's her parathyroid, is not going to be easy at all... we already struggle with weight (and she's losing again), it causes issues with bone health, muscle weakness, vomiting, nausea, fatigue, kidney problems.... ugh ugh ugh... and there isn't much in the line of treatment and all of these things are escalated because of her adrenal insufficiency... it's going to be a rough road.. but it's a road and not another I don't know...

Now I have to stop the stress path I was on and lose the 10 pounds I've gained and take care of myself again.  I have to be at  my best in order to be what she needs.  I spent the majority of our 3 days at the hospital crying and yelling at someone... the yelling was necessary and the tears were pure frustration because nobody was listening... I'm learning to nap when she does.. the dishes and laundry can wait.. our sleep is very very erratic and has been for months.  I got my work shifts covered for a few days and am putting her and myself first.

I put this out there because I am physically hurting and I need to give my emotional pain life so my physical pain can go the fuck away.....  I don't really ask for prayers but we could really use some so maybe this path won't be quite as hard as it has the potential to be....

oh, and my very own pink fucking shoes should be delivered tomorrow...