Eating through a tube

What a week!  Well, more like 7 weeks.  If we are being specific, 4 years.

A few months ago I was diagnosed with gastroparesis (delayed gastric emptying).  At the time it was not severe or interfering with my quality of life.  Then came January 5th when I lost my appetite.  A lot of illnesses were flying around and I assumed I caught one.  However, I never got my appetite back again.  Each time I would try to eat I would experience a feeling that one more bite will make everything come right back out.  Liquids were harder because they hit my stomach so quickly and stayed in for so long.  Imagine eating your dinner and instead of digesting it, you kept it in there, right at the top and woke up in the morning still feeling last nights dinner.  I was too afraid of germs to make a doctors appointment so I waited longer than I should.  Finally, last Monday I called for a doctors appointment.  I was treated for dehydration and the doctor made a call to a gastroenterologist (GI) specialist.  The plan was to get some testing done and go from there.  Unfortunately, I only became more dehydrated landing me in the Emergency Room on Thursday night.  I arrived with a migraine and stayed for a while to get fluids and meds for my head.  We were told to see a doctor the next morning at our medical office.  My labs showed dehydration and malnutrition (obviously) and since I still wasn't able to eat or drink it was determined that I would be needing a PICC line.  A PICC line is an IV that goes in through my arm and up to the top of my heart.

Friday afternoon, I went into the hospital to have my PICC line inserted.  What should have been about 1 hour took 4.  After a failed attempt on my left arm they finally succeeded on my right arm.  I stayed 2 more hours for more hydration.

Saturday morning was my first visit with my home health nurse.  She came to teach me how to use the TPN (total parenteral nutrition) which at first is quite overwhelming.  Anthony wasn't home so I needed to learn it all to be able to do it myself.  After going through the lesson it was time to start the pump and get it in me.  As soon as it started I had an adverse reaction.  It felt like something was squeezing all the air out of my chest causing me to cough out my air and not inhale.  My face then felt like it was burning, turning bright red, followed by turning pale, sweating and then shivering.  The nurse reacted quickly turning it off and flushing my line.  At this point I had no idea what we were going to do if I couldn't tolerate TPN and I couldn't eat enough to sustain.  A few hours later the doctor had us try regular saline with added potassium and dextrose and unfortunately I had the same exact reaction.  The doctor sent us to the Emergency Room and advised that I be admitted into the hospital until we could get this all figured out.  I called Anthony home from work again and we took off.  As we were driving down there I felt uncomfortable in my chest.  Sitting in different positions would make it feel better so we assumed there must be a problem with the PICC line, most likely touching my heart.  The walk from the parking lot into the hospital was difficult.  I was out of breath and feeling fluttering in my chest.  I explained the situation to the admitting staff and suddenly became extremely light headed.  I felt myself start to fall backwards so I grabbed Anthony and then I went limp.  A security guard that was walking right past us caught me from behind with Anthony hanging onto my arm and before I knew it, I was in a wheel chair being swept back to triage where I had an EKG and then brought to a room.  I don't get scared that often about my illness but when this happened I was scared.  I usually like to joke around (shocking, I know) but I just laid there praying.  We saw the doctor and then I was sent for a chest x-ray to check the placement of my PICC line which turned out to be fine.  The doctor saw no reason for me to stay in the hospital and since he thought the placement was fine, we went home.  We certainly were not happy since I nearly passed out upon arrival and had such bad reactions earlier.  Going home without answers as to what was going on was quite unsettling.  I was a little nervous but actually felt better about going home because I am such a germaphobe and hospitals tend to be filled with nasty germs.

I had home health care nurses come each day and have successfully been able to do the TPN through my PICC line.  A friend who also has a mitochondrial disease came over and gave me an education but more, a sense of relaxation.  Knowing she is a phone call away for any help puts me at such ease.  I am so grateful for all the support that I have.  My family has really stepped up, dropping whatever they were doing at the time to help me with the kids or take me to the hospital.  It's a blessing to have this kind of love.

My newest accessory, a backpack filled with nutrition feeding my body and keeping me alive.  For now I will be hooked up to this 24/7.  I see a specialist on Thursday and hope to get more answers.  Until then, we are learning to adapt.  It's a hard change, one I wasn't expecting to happen so soon.  It's frustrating, scary and overall just a bummer to be going through.  It is what it is and we will embrace it. I know there is always going to be light even though there are dark moments and I know I have so much to be grateful for.  I am completely aware that I could have it much worse, so I count my blessings.

A health update

A little health update:

I had surgery last week that went very well.  Except for the anesthesia.  I had a biopsy of my breast which came back great.... just extremely dense fibrous tissue all matted up together and something else that I can't even pronounce let alone spell correctly.    Doesn't matter though because it's benign and that's good enough for me.  My dad reads this so that's enough talk about my boob.  I never had pain from the procedure which is great, however, I experienced a tremendous amount of muscle weakness.  So bad that for a couple of days I couldn't even make a fist.  Breathing was hard and controlling bodily functions was tricky.  Too much info on that one?  Sorry.  I slept a lot and laid flat because as soon as I was standing for a couple of minutes I became very dizzy.  All is good now.  I'm back to bench pressing and cross fit... totally kidding.  But I can stand and walk which is great.  We appreciate the little things around here.

After 15 months of waiting, I saw the Mitochondrial Specialist down at UCSD.  Some more of the test results came in and revealed where the deficiencies in my DNA cells are.  The doctor spoke to me while educating 3 other MD's who were doing their fellowships.  I nodded along with all of the them and wondered if they had any idea what language he was speaking.  I didn't.  I looked over at Anthony and he seemed to be following along so I figured when we got in the car I could ask how the appointment went.  After class, I mean the appointment,  the doctor asked if I had any questions.  Just one... the same one I always have.  Have their been any cases where a patient completely recovers and regains all the health they once had?  The short answer as always was no.  BUT, medicine is coming along so quickly and we are just a couple of years away to finding a way to reverse the damage.  Good enough for me.  Actually better than that.  I felt so much relief hearing how close we are.  Even if I don't get my health back, I know that if I passed this on to my children or if they pass it on to theirs, there will be a cure!!!  I hold on to that hope with every ounce of energy I have left.  I have a complex 1 deficiency and another one.  (I am having the report sent to me because apparently I can't remember everything.)  There were also other genetic abnormalities found that are good to know as far as drug interactions.  Now I know not to interact with drugs.  People with complex 1 deficiencies also have a really hard time with anesthesia.  That makes sense now looking back at all those surgeries.  The unfortunate part is that because of the nature of the disease there will most likely be more surgeries in my future.

Since we are talking about health... and talking about me... I thought I would clear up a few misconceptions about mitochondrial diseases (and chronic illness in general).

What is it?

"Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells. Mitochondria convert the energy of food molecules into the ATP that powers most cell functions.

Mitochondrial diseases are sometimes (about 15% of the time)^[1] caused by the mitochondrial DNA that affect mitochondrial function. Mitochondrial diseases take on unique characteristics both because of the way the diseases are often inherited and because mitochondria are so critical to cell function. The subclass of these diseases that have neuromuscular disease symptoms are often called a mitochondrial myopathy."(Thanks Wikipedia)

If you want to read more about it click here.

So I have dysfunctional mitochondria, we all knew I was dysfunctional, now we know why.  

Nothing I did or didn't do caused this disease.  It's just how God made me and I am OK with that.

It can't be fixed by using my mind.  I tried.  Wyatt even tried using Jedi force to make it disappear.

I am not depressed.  The opposite actually.  I have so much love and appreciation for life that even when times are tough, I don't get too upset.  It is what it is.  It's not like I have a disease caused by something like obesity and if I just lost weight I could be healthy.  If I can't fix it, why stress?  I am also completely aware of how good I have it.  Things could be so much worse and I am so incredibly grateful for all the amazing blessings I have in my life.  They are countless and I make sure to thank God for them all day, everyday!!!

I look "normal" on the outside and always will.  The disease is inside my body in places that you can't see.  Along with many other people with chronic illnesses we try hard to make ourselves look good.  No one wants to look "sick" (which I'm not really sure what sick looks like)  Hearing, "Oh you look so good though" translates to, "You must not be sick."  I appreciate the compliment but make sure you are not judging someone by how they look.  Like when they walk out of their car and into a wheel chair.  "Gasp, she can walk!"  Seriously, not everyone in a wheel chair is paralyzed.  Common misconception... happens all the time.

I have no doubt I will be healed.  I will be patient and wait on His timing.  In the meantime I will continue to be grateful and joyful everyday of this beautiful life I get.

we went out last night

We took my mom out last night for her birthday to the Jimmy Buffet tribute band at Wilson Creek Winery.

And within 5 minutes of arriving this started....

***********************************************************

The highlight of the night (besides spending time with my family) was meeting this beautiful women.  Lynn is the owner of the Stampede.  12 1/2 years ago I met the man I will spend the rest of my life with at the Stampede and that was all made possible by Lynn and her husband pursuing a dream and being so successful!

Love

Love

10 years ago I dove (just kidding, I jumped feet first) into an adventure of a lifetime.  Marriage.  I married my best friend who makes me feel complete.  He's the guy I tell my secrets to, share my dreams with and explore the world (ok, just Southern California) with.  He's the guy I confess my fears to and he's the guy who comforts me when I'm scared.  He is my rock.  He is my partner.  He is my lover.  

He is my husband!

We have walked through trials together, we have witnessed miracles together.  We have experienced so much joy together.  I am so blessed to have this man to share the journey of life with.

I love him!

 We took the 1 and stopped in Laguna Beach for lunch, drove a couple miles north and played around Crystal Cove and had the best milkshake and fries and then drove through New Port.  That's when exhaustion took over so we headed back home for an early dinner.  I loved having the time with just us, talking about whatever we felt like, driving where ever we wanted.

I can't wait to see where the next 10 years take us!

wyatt and brooke

Wyatt has been having stomach pain for a while now and after seeing the GI specialist it was determined that he needed to have an upper endoscopy.  Brooke, my niece has also been having stomach issues and after multiple tests she also needed an upper endoscopy.  The cousins have 2 different GI specialists in 2 different cities.  Brooke was scheduled for hers before Wyatt and then rescheduled for the 12th of June, this time with Wyatt's doctor.  A week later I was scheduling Wyatt's and they gave me the exact same date and time as Brookes.  How perfect is that?!  It made everything so much easier for all of us.  Especially the kids.  (and me)

Wyatt was a little apprehensive but super brave.  We had been promising him no shots because that's what they told us.  The routine is that the kids get gassed and then they put the iv in them.

Well.... because of my problems with anesthesia they needed to take the same precautions with Wyatt.  Which meant: no gas!  He needed to have the drugs pushed through the iv.  Anthony was the lucky one that went into the OR with him.  I was taken to the waiting room across the hall to wait.  The poor kid was poked 3 times before they got it!!  I could hear him screaming for me the entire time.  So I sat in the small waiting room crying for him just as hard.  The screaming stopped (his, not mine) and Anthony joined me in the waiting room.  We sat for a whole 7 minutes before the doctor came in.  Wyatt went to recovery and Brooke went in for her procedure.  It seemed like forever before the nurse came and got me to help wake Wyatt up.  I went into the recovery room and saw him completely out, with bubbles coming out of his mouth. The nurse gave it her all to wake him but he was too sleepy.  Meanwhile, Brooke was wheeled in and she calmly opened her eyes, saw me and smiled.  I left Wyatts side to be with Brooke.  They I started to wonder why Wyatt wasn't waking up yet.  He finally opened an eye and muttered out the words, "they poked me" and then went back to sleep.  The nurse moved him to the post op room and I sat with him still waiting for him to wake up.  When he did open his eyes he was so dizzy so he just kept sleeping it off.  He didn't have the same anesthesia that his cousin had and they flushed Wyatts but he still had a bit of a hard time.

Once he was up, he got his popsicle and started with the repetitive questions.  I should have recorded him.

These two did so great!  I'm pretty sure I had more tears than the two of them combined.

Now we wait for the results and pray for answers.  It's not fair that these cuties have to have so much pain everyday!  I am in awe of their bravery and pray they can feel better.

hello

Hi!  It's been a while hasn't it?  I think instead of trying to play catch up, I will start with the beginning of summer vacation.  Start with the most recent events and see how well I can keep it up.  With the longer days, the warmer nights, the extra giggles I know I will have lots to share.

Let's begin with the last day of school... the day the kids have been waiting (and crying) for since last August.  We celebrated with an impromptu party at the park.

The next morning, the kid and I hopped in the car and drove to Laguna to stay the night with my grandma.  I haven't taken the trip up their alone in a while (because the drive sadly wears me out) but I figured since we were going to spend the night it would be fine.  I made it about 40 minutes and was completely exhausted.  I used to LOVE road trips and now I can't handle 40 minutes??  Whatever.  Soon after we got there, my grandma sent me to bed for a nap.  What a good grandma.

We got up the next morning and headed home with this pretty lady to celebrate her 87th birthday!!!

The cousins all came to help celebrate too!

Which meant I got to hang out with my twin sister...

And my awesome sister-in-law with her freshly painted nails.

AND this guy!! Love him!

These guys didn't want to go home... so they didn't.

So here were are on day, oh I don't know, 4? of summer vacation and our brains are already fried.  We are looking forward to sleeping in, staying up late, lots of play dates, swimming, beach days.  Oh man, just writing that makes me exhausted... but happy!!

A little health update:

I was supposed to have a doctors appointment with the mitochondrial specialist in December (that one didn't happen because lab work was never submitted) so the appointment was made for May.  Unfortunately UCSD had a 2 day strike and needed to cancel appointments.  Mine was one of them.  I'm not sure when it will be rescheduled for but in the meantime I have been in contact with the founder of the lab where my muscle biopsy is.  The geneticist called me a few weeks ago and explained a bit about what mutations and variations they are finding in my DNA that are causing the disease.  We are getting Wyatt tested through this lab as well.  It will take about 4 months before we get the results.  I'm not ready to go into too much detail about Wyatt's health but he hasn't been feeling that great for a while.  He will be having an upper endoscopy on Wednesday (as long as his cold is gone) at Children's Hospital which I am really eager to get the results for.  I am a bit freaked out about the anesthesia because of my reactions to it but I know he is in a great  place and in really good hands.  So, if you would... could you pray for my little guy?

 Feels good to be back :)  Thanks for the encouragement to start blogging again.  (you know who you are) 

Happy Summertime!!

trials

The truth about trials was the topic of a recent sermon at church.  It couldn't have come at a better time.

Our pastor said, "God works in our lives through difficult trials to accomplish His purposes and bring us to a mature faith."

I'm expecting to become extremely mature very soon.

My mitochondrial disease continues to get worse, yet I haven't been able to see the specialist since last June.  We are still awaiting a biopsy result that should have been done by December (for the December appointment that never happened) but unfortunately the order was never put it by someone.  Meanwhile, my muscle weakness has progressed to the point that I can't do a single sit up.  I tried so hard.  I used every muscle I had, tried willing myself up and still... nothing.  A few minutes in the garden cutting vegetables caused so much pain in my legs that it took four days to recover.  Crazy!!  The muscle pain I felt from that was similar to the pain I had after walking in the Breast Cancer 3 Day.  Just from a couple of minutes of straining.

Trials are to be expected.

The disease is progressing, I can accept that.  I try to push forward but when we look back and realize that a year has passed and we have missed out on so much we lose hope.  A lot of hope.  Hope is what keeps me going but when there are no answers, no cures and no improvements what do I have to hope for?  A miracle?  Yes.  A miracle.

"Trials defined:  Hardships which God either permits or causes in our lives to accomplish His purposes, if we respond in godly obedience."  So instead of saying, "Why Me?" I need to say, "What are you trying to teach me?"

I received a letter from insurance with two denials for care and one very large bill because somehow authorization for something had never been submitted.  So they leave the bill in my hands.  All because one person didn't not do her job... again.

Joy is to be our response.  And it is my response because I know that I am not in control.  Obviously.  I wouldn't wish any of this on anyone.  God's plan is to be trusted and that is what I am doing.  I am trusting that good will come from this.

Wyatt's ENT has said that she needs to preform a procedure where she goes into his throat to see what is causing him to have such severe episodes of croup as frequent as they are and as old as he is.  She speculates that his coracoid is malformed but needs to go in and see.  I have been putting this off for a year now but with the three most recent episodes he had, ending us in the ER, I know it is time.  I just can't bring myself to put him through any unnecessary testing and especially putting him under anesthesia.  That is my biggest fear.  I know I need to trust in Him but as his mother it is so hard to do that.

When I feel like I can't take anymore, I am shown that I can.  I am handed a child with a horrible case of the stomach flu.  This is one thing I cannot handle.  At all!!  It has lasted five days!!!  And just when I think how funny His timing is and we are going to survive, another child wakes up with a tummy ache and fever.  Seriously??!!!  I keep telling Him I CAN'T handle this.  I really can't and for some reason I keep getting trials thrown at me and for some reason I do get through it.  It leaves the days dark and the nights long and all I have is hope that we will pull out of this.

Count it all joy when you fall into various trials. james 1:2  I live my life in joy and will continue to live my life in joy.  There is so much beauty and love that surrounds me daily and I couldn't be more grateful for it.  Yes, I have been handed some icky trials but I will grow from them,  I will learn from them and apparently I will mature from them :)  I am so grateful for every part of my life.

There will be rain but there will also be sun and some days... there will be rain and sun together!

You know what happens with rain and sun?  Rainbows.