Hard Truths

Raising the family that I am my mind is ALWAYS going.  The things that go on in my life and in my home are immense, intense, overwhelming, terrifying, painful, joyous, awe-inspiring, uplifting, and amazing.  I'm sure I could fill this entire post with words to describe our life.  I could simply open a dictionary and could make 2/3 of it perfectly describe a day in our home, some days possibly even more than 2/3!

The problem is do you get our life?  Do you understand what I ACTUALLY mean when I say those words.  You get what those words would mean to you from your life experience but you don't GET what they mean for our life experience.  And that's ok.  I don't want it to sound like that's not ok, or that I am upset with you not GETTING it for my family's use of the word.  That's normal.

The problem is though people need to GET what it means to be living with a rare disease, what it means for our son, for me, for our family.  Other special needs families need to know that they aren't alone in their thoughts and feelings.  Their extended families need to know how to support them, and talk to them, help them and understand them.  Their friends, schools, servers at restaurants, cashiers at the stores, and community as a whole need to GET what it's like to live this special life day in and day out.

Sometimes I think those of us in the special needs community only share certain things.  We talk medical with the best of them.  We can discuss syringes, extensions, curly tubing, swab caps, CADD prizm's, joeys, infinities, medications, supplements, weight, doctors, testing, drainage and last but VERY not least POOP with great ease and detail for hrs.  But the moment it comes to talking about our fears and thoughts and dreams and guilt we lock down and keep it all inside.  Whispering behind closed doors with our spouses (some not even able to do that) about all of these things, crying silently in the shower keeping it all inside.  Then we hit facebook in the morning, with detailed facts about our kiddos night and day and appts and phone calls.  Don't get me wrong we do talk some about our fears and thoughts, especially when we are faced with a "member of our group" being placed on hospice or passing away.  But the thoughts are there for us, they are real for us EVERY day.

Sometimes I wonder if I'm the only one who thinks about it?  Am I the only one who cries for what is to come?  Are we the only ones to sit up late at night talking about it, discussing it, saying aloud the what if's and what will we do's?   Now years into this life I KNOW that I'm not, but still it's such a quiet part of our community.

Heck as I re-read what I have already written I see that I continue to use the words "it" to replace, hospice, death, progression, funerals, burial, passing, pain, torture, emptiness.  Even typing this post about how we avoid these topics, I continue to avoid the words.

My conclusion on why we do this?  It's scary as hell.  It's painful.  We are not at the point of hospice. We are not specifically planning for Eli's death.  We have talked about our wants and desires for that point of his life.  We know what the road we are on leads to.  We have thought multiple times that we were going to lose Eli already during these last few years.  We aren't to the point and the pain is so huge for us now that I can't even imagine the pain when we are there.  Some times when the talks come up with the docs and there are brief mentions of what's to come the pain is so real for me that I can't breathe.  That the world feels as though it's crumbling in.  So I get how painful it is for us to talk about it.  How much it hurts to say the things that are on our mind and in our hearts.

Sometimes I feel guilty to talk about these fears and thoughts.  There are families out there whose kids are on hospice now, whose children have already passed away and earned their wings.  My fears and thoughts seem so small and trivial and unfair compared to the pain they are living with.  My child is still here with me.  As sick as he may be, even on his worst days he's still here.  I can reach out and touch him and hold him, I can hear him breathing, I can hear the clicking and swishing and bubbling and beeping of all the machines keeping him alive. I never want my pain to be compared to theirs. For I can't imagine their pain, I don't want to imagine their pain. I have to remind myself that as similar as all of our journeys may be at points, as much as we all support each other and try to walk these lonely roads together, that our stories are still very different and our feelings can all occur independent of each others journeys. Maybe this doesn't make sense to everyone. But to me this all makes perfect sense, and I know it will to so many of you out there. I guess what I'm saying is I vow to be more open about my thoughts, feelings, life, fears and hopes. I hope others can do the same. Special needs families tend to feel very alone and isolated as it is..Then we keep so many of these things inside of us and don't open up to each other easily and share our stories with each other. Lets not make each other feel so alone. Lets not be left questioning "am I the only one" Let's not make new moms and dads and families feel as though they are alone in their journeys. I vow to you guys that I will take the leap. I'll share the good, the bad, the hopes, the fears, the thoughts, the dreams, and the nightmares. I have HOPE. I have hope for myself, my family, my little warrior, and I have HOPE in our community! I love you guys more than words can explain. I don't know where we would be without each other.

So you may be thinking, great plan Heather, makes perfect sense and I think it's a good idea....get to it.  I will.

What's going on with our family?  That's quite the question. 
Emily ~ She threatened to kill herself (she told her friends AT school and the school psychologist called us) and we ended up having to take her thru the ER and then she was admitted overnight to a children's mental health home.  She's stressed about falling behind in school and the pressure of all of that.  She's falling behind because she refuses to do her school work anymore and if she does do it then she forgets to turn it in or loses it.  Her test grades are perfect but she doesn't want to do any of the extras.  She practices her violin but never turns in her study sheets resulting in an F.   She spends as much of her time as she can watching her TV shows or listening to music.  If she doesn't have music then she can barely function.  She is in love with every boy she meets and it's a big struggle.  She doesn't want to speak to us, or anyone else for that matter.  She does stay busy with choir and violin and such, but she's struggling more than most would know.

Jace ~ He's out of control.  His mood swings have escalated.  The docs believe he has a mood stabilization disorder, basically he's to young to label him as bi-polar so they have fancier terms now.  They can't get him on any type of meds that help.  He's failing in school and no matter how the info is presented he can't seem to grasp it easily.  They are doing further testing at school as he definitely seems to be having a big learning issue.  He's outbursts have gotten to the point where it takes 2 adults to physically control him.  Last week him punched bob, kicked my mom and fought a sibling.  Yesterday night we had a huge blow up over him taking a shower and he tried to slam a glass shower door on Bob.  I ended up getting hit by the shower door above my eye (I now have a knot and a bruise) and this blow caused my head to hit the cabinet behind me.  This was the first time hitting my head since my surgery and boy it felt horrible.  We have no idea what to do with Jace and nobody has been able to figure something out.

Benjamin ~ He is all over the place.  He refuses to participate in class and never does ANY of his school work.  His teacher can't get him to focus or do his work.  Today she had him spend 2 hrs working on 1 worksheet and he only got 3 problems done.  He no longer wants to hug anyone and hates kisses or any affection.  He throws random huge tantrums that can last from minutes to hours.  He obsesses over things to the point where the whole house shuts down until the missing item is found or his problem is resolved.

Ariana ~ She picks at her feet and belly button to the point of causing herself pain and medical problems.  They have tried to wean her off her meds for overactive bladder and this means running to the bathroom sometimes 15 times an hr.  Makes for fun times at school and in public.  She's doing amazing academically in school, but can't keep focused and keep her mouth closed during class to save her life.  She's obsessed with death and loves to talk and plan and ask questions about it all the time.  She's stubborn as a mule and refuses to do anything, she will spend 4 days cleaning her room.

Elias ~ My little man.  He's mostly stable right now as long as you don't care about him shedding intestinal lining, pooping out full clumps of medication, grinding his teeth from possible pain, turning bright red and sweating profusely and having goofy labs that nobody can quite figure out.  He's also having eye issues and we are working to get his glasses and lenses changed out to see if that helps him some.  We met with his ENT today and we are a GO for surgery.  Eli will be having his tonsils and adenoids removed, tubes in his ears, possible nasal dilation, and a bronchoscopy.  I'm beyond terrified for how this surgery will go.  Pain management, airway protection, and bleeding control are big concerns at this point.  His surgeon is adjusting how they usually do this surgery to try to cut down on some of the issues, BUT that means a longer surgery which means longer intubation and more anesthesia.  Also because of the nature of the surgeries Eli will need to be off his blood thinners for 10-14 days after surgery.  That is terrify to think about. 

Bob and I ~ It's a day at a time.  Sometimes hour by hour.  My surgery recovery is going pretty well.  I'm doing more than I probably should because it's almost impossible not to in a house this busy.  This has resulted in sore muscles and daily headaches.  I'm just trying to get to a point in this recovery where I can almost be myself again, but that's not looking like it's going to happen.  The lower part of my skull and neck are very sore and still hurting quite a bit.  The middle and upper section of my head are so numb I can barely feel when they are touched.  Which makes getting hit in the head apparently so much worse, because I didn't realize how bad it was until it really was hurting.  Sleep is what I want to do, but that only happens at night now, naps haven't happened for almost 2 weeks.  It's nobody's fault, it's just life around here.  My mom leaves on March 10th so after 2 months it will be a big adjustment trying to keep up with it all around here.

So you say WOW that's alot of info.  It is.  It's the whole story.  Not just the sugar fluff.  Don't get me wrong there is lots of sugar fluff.
Ari is calling Bob "Dad" consistently and it's so adorable.  She flutters her big eyes at him and his heart melts.  Her drawing has gotten so amazing and she's very talented. 
Ben is at times so adorable and loving and once in a while will just walk up and climb into my lap.  Sometimes he will go to Eli and give him hugs and play with him without any prompting.
Jace can be the most loving helpful kid ever if he wants to be.  He is amazing with Eli and their relationship is so fun to watch.
Emily is getting so good at the violin and we can really hear her progress.  Her love for music is blossoming and she can be heard singing thru the house.
Eli is learning how to pick up his toys and loves to help with laundry.  He's learning how to do puzzles and really enjoys them.
Laughter can be heard often thru our home. 

But we have real fears.  HUGE terrifying fears that grip at my heart.  I'm terrified for every illness with Eli.  This upcoming surgery.  The things that could go wrong in the blink of an eye.  The thoughts of what is to come.  The guilt over missing 3 hrs with Eli if I run to the store.  The laying awake at night listening to make sure that I can hear him breathing.  The fears are all there and they never leave.   I look at Eli and I'm terrified for what lies before us, how long is left?  Could this be the last day, week?  Could this be the last time we hear that laugh or see that skill?  Progressive disorders are rough as it will get worse, yet nobody knows when and how.  Life can change in the blink of an eye...and not only CAN it change but it DOES change.

I'm terrified for who and what I'll be when this journey with Eli comes to a close.  I am so isolated from life and friends and family and the world.  I am Eli, I am an extension of him.  I feel as though we are attached by an invisible line that keeps us always close.  His information is constantly running thru my head ready to give to the first doctor or nurse who needs it.  I'm a vital piece of his medical equipment.  Every moment of my life is consumed with caring for him.  I am a shell of a person, I am soley Eli's caretaker.  I love every moment of it, but I'm terrified for when that is no longer my job.  I'm exhausted.

For now I'm exhausted.  This has been quite the mental and emotional post. 

***My final disclaimer.  All comments left must be approved by me first before posting.  I will not post anything that is inappropriate or threatening.  Also keep in mind that I have a tracker on the blog***

FUCK YOU

Dear INSANE blog stalker.
FUCK OFF.
Here is my surgery journey in photo.  I am very clearly not making this up.  I checked into my local hospital.  I spent 2 hrs being poked while they tried to get an IV.  I was wheeled into the operating room.  My head, neck, and brain were cut open.  Part of my skull and vertebrae were removed.  my head and necked were stitched and stapled shut.  I threw my guts up repeatedly in post-op.  I spent 2 terrible sick painful days in neuro-icu.  I spent 2 more days on the floor.  I had my stitches dug and ripped out of my head.  I feel the REAL pain from this REAL surgery every day in every aspect of my life.
So FUCK YOU!

Here is me and the bear my family made for me in Pre-Op.  I was wheeled back to the OR 10 minutes later.

Here is me in post-op.  I was nauseaus as hell.  They were giving me meds every hr to control the pain and keep me from throwing up.  I kept forgetting to breathe so they kept nudging me and reminding me.

Here is me a few days later after I got onto the neuro floor.  This was one of my first times sitting up.

Here  is my incision a few days after surgery.

incision right around a week after surgery.

my incision the day i got my stitches removed

my incision this morning

Life

I haven't blogged in a while.  Mainly because I'm recovering from brain surgery.  This seems so obvious.  I'm exhausted.  Typing is something my brain is still trying to re figure out.  I have headaches alot.  I can only sit up for so long before my neck gets so tired, and for quite a while there the dizziness and nausea would kick in something fierce if I sat much.
I'm officially in PT now.  She is having me go 3 times a week.  It's not fun, but not horrible.  I really like my therapist and that helps.  Most of the work right now she does while I just lay there.  She's starting to have me do a few basic stretches by myself and we always end with this amazing heat machine that I'm in love with!  I've been wanting heat since my surgery.  I'm still not allowed on my neck or head but at this point my shoulders have been very nice. 
My incision is looking really good.  I'm still having quite a bit of discomfort, a whole lot of tightness, and sleep is a huge struggle.  I have my next recheck with my surgeon this next week.  Hoping he begins to adjust some of my restrictions.  I'm still currently only allowed to lift 4 lbs.  That really covers what's going on with me physically.  For me currently all Mito testing is on hold until I'm farther into my recovery.

The 2nd not at all obvious reason to not blog much lately is a hateful comment that I received and wasn't able to respond to.  I have NOT brought this on myself.  I can not give myself a Chiari Malformation OR Mito.  These are not something that you can just go and get for yourself.  You can't do something to cause them.  You can't "catch" them from a sick person.  You can't will them to come into your life.  I did NOT bring this on myself.  I did NOT ask for this for myself.  I sure as HELL didn't ask for this for my son.  I didn't ask to suffer.  I'm hating every fucking day of this and how it makes me feel.  I would do it over and over though if that meant that I could take it from my son.  This is hell on earth and until you have lived it you have NO fucking clue and you have NO right to talk.  Children and adults are dying and NOT one single one of them has done anything wrong.  They haven't asked for this.  Neither have their parents, or siblings, of families, or friends.  This is HELL on earth and this is also our HEAVEN on earth.  The torture that my family and so many other families go thru is HELL.  It is unbearable, unimaginable, and not able to understood, only felt by those living it.  It is also our heaven on earth because the strength we learn and the blessings that we endure and the HERO's and friends that we meet along this journey are amazing.  It is also unimaginable and not able to understand, but truly to be felt deep down in our hearts and souls.  We are all connected in these journeys, as separate as they may be we are all connected by what we live each day, in the Chiari community and in the Mito community.

My family.

Emily ~ Emily is at such a tough age.  She's stretching her boundaries and pushing her independence.  She's exploring her power, and seeing where she can dig in and refuse to give.  She's dealing with some very typical pre-teen issues.  There's been missing work, rushed work, forgotten assignments, skipped work, missed chores, arguing, eye rolls, hair flips, and TEARS.  oh the tears.  Love the pre-teen emotions.  From what we hear from the other parents and the teachers this is a common theme thru a large group of the 6th graders this year.  The last year of elementary school.  How time flies.  She's staying busy with school, violin, choir, and babysitting.  She's still in her school orchestra as well as the advance 6th grade orchestra.  She's still active in choir and loving music as much as ever.  She babysits at least once a week, sometimes twice.  Tonight is her first overnight babysitting (the parents are there).  It's her regular customer.  The youngest daughter is having a b-day sleepover and they have asked Emily to help with the overnight party.  It should be fun for Emily and definitely a bit of babysitting variety!

Jace ~ Jace is struggling in school.  The work is getting harder and he's really struggling to keep up.  It takes him alot more time to process the information, especially if it is written.  The math concepts have gotten more confusing and even reading them aloud now isn't proving to be enough for Jace.  We meet with his teacher this week, as his teacher is equally concerned.  Jace is doing well in speech right now, and is being alot more willing this year to spend some extra time focusing on his speech sounds.  They are definitely still a struggle for him, but at least he's trying this year.  When he's not in school he's home begging to be outdoors.  He doesn't care to much about the cold weather and still prefers to be outdoors as much as possible.  He's been outside almost all day today with a friend.

Benjamin ~ Ben is Ben.  I feel like that describes him perfectly to all that KNOW him and says nothing to those that don't.  Ben is set in his ways, as deep as always.  Life has to happen Ben's way, the same way, every time.  He's struggling with focusing in school and is constantly behind on his school work.  He refuses to try and rushes sloppily thru it all.  His teacher is lucky to even be able to read his work.  His teacher this year doesn't push Ben to do his best work and she allows him to skate by with almost nothing.  It hasn't been a great fit for Ben.  Socially Ben has made some great strides.  He has his best friend at school(for 2 yrs now), and even has a few other friends as well at school and in our neighborhood.  He still tends to parallel play alot, but will actually get involved and play as well.  His new favorite hobby is origami and paper airplanes.  He went thru an entire pack of computer paper in no time flat.  He's always looking for books at the library or grabbing an ipad to go to his favorite origami websites.  If he finds you on pinterest he'll hang over your shoulder looking for projects as you scroll.  He's also discovered that he has "lines on his belly" and loves watching his abs and is so proud of them.

Ariana ~ She's LOVING kindergarten.  She's reading simple books with minimal help and has advanced to the next book program in kindergarten.  Her writing has improved so much this year and she's even trying to sound out and write her own words and sentences.  She's the social butterfly, so always making friends and having fun.  She's loving her new haircut and is happy that she can still wear bows.  Sometimes I still look at her and almost panic that all her hair is gone.  After having long blonde hair to her bottom for so long this chin length style is a big change.  It fits her so well though.  Totally goes with her princess sass!  Her birthday is coming up on the 13th and she's super excited to be turning 6!  She loves that she's getting so big.  I think age is most important to her, way more than it's ever been for any of my other kids.  I'm guessing that's what happens when you have 3 older siblings and you are as strong and independent as Ari is.  She's by far my most stubborn as well, which can be interesting!  She's finding a love in music as well, and has to have it to sleep.  She loves to always have her toe nails and finger nails always painted, preferably in pink or purple!

Elias ~ My little man.  He's doing well and struggling all at the same time.  I know that doesn't make alot of sense.  He's running higher temps every day.  He's having pain to the point of grinding his teeth until given pain meds, but we can't find the source of the pain.  His keppra levels are still struggling to come up and that's WITH doing the meds thru his IV.  His finally back at a good point with his secretions.  His intestines are still not super happy with us but for now they are chugging along.  He's developing some new rashes.  His thrush is finally gone.  He's signing way more, and even on certain things he's consistently combining 2, sometimes even 3 signs together by himself!  He's using his polite words; thank you, please, sorry, help, excuse me.  He's beginning to label more things with sign as well!  He's loving his dress up set, basketball set, and bowling.  Jace and Eli love to bowl together.  They set up the pins and hold the ball and run at the pins falling over together knocking them all down.  This results in huge belly laughs from Eli.  Something we don't get often, but love so very much.  When Eli starts his big belly laughs everyone in the house tends to stop and come and watch.  It's mesmerizing.  It's normally his siblings who get them, when they play rough and silly with him.  It's my favorite time.  It's so normal.  So normal it's almost scary sometimes.  For those few moments they are simply siblings, on the same level.  There is nothing different about Eli.  Melts my heart. 
Eli's primary doc is passing time and keeping Eli stable until farther into my recovery.  Once I'm stronger the goal is to get Eli's big surgery done quickly.  Tonsils and adenoids removed, and tubes placed in his ears.  He really thinks this will make a big difference.  He seems a bit to optimistic, but my mommy heart is always guarded, history has shown that Eli's body doesn't always follow doctors hopes and plans.

Bob is well.  Busy as always.  Trying to keep up with all of life!
As most of you know we will be moving a block away.  14 months in this home.  There are some things we are sad to leave but because of health and home issues we have no options left.  We are staying in our neighborhood, school, all of that.  We were very lucky to find a home available right by us!  It is even larger than our current home and will allow the master bedroom and Eli's bedroom to be on the same floor.  This eliminate stairs for he and I!  It also has a working garage which is very much needed with Eli's wheelchair!

I would love to tell you that I will update soon, and that I promise to stay current and up to date with it all.  But currently I make no promises.  You can always find me on facebook which is updated often, especially with pics!  I will end with 1 of my favorite pics lately!  I was able to prop Eli one evening before bed for some super special mommy and baby cuddles! 

oh and one final thing to the lovely person leaving comments and saying cruel and completely inaccurate things on my blog...FUCK OFF!  oh and have a lovely afternoon!

super brief but updated non the less

I'm here.  Mostly.  I'm mostly sleeping.  They have me on pain meds and muscle relaxers and pain patches.  I can't sit much as it makes me super tired and dizzy.  I spend most of my day laying in bed sleeping, with bits of TV viewing. 
Yesterday my incision was red and I ran a low grade all day.  Today the fever is done.  I meet back with my surgeon on Thursday.
Last week I ended up at the ER.  CT showed CSF collecting along the incision.  They sent me to a pain specialist who changed my meds around.  It's helped.  Not cured but helped.
the family is pretty good.  Adjusting the life.
i know this update is super duper short but honestly it's all I have energy for right now.  I will slowly try to get more detailed updates up over the next few days.

Recover update

900
Heather is feeling better this morning  she ate some breakfast. She is sitting up with the help of the hospital bed. Pain and discomfort is still about the same. She also got her catheter out this morning. Doc says pain and discomfort could last a couple of weeks. I'm just happy we finally got it somewhat under control.

4:15
Heather has ate well today. She is still in a lot of discomfort. Her neck is super stiff and sore.  Making it very difficult to get around and move. Even the simplest movement is difficult for her at this point. Pt and ot are trying to help her with the mobility portion. They are also trying to get the stiffness and pain more under control. She is still pretty tired all the work they are having her do is exhausting.

Day 2 of surgery and recovery

800
Heather had a rough night. She had a lot of pain nausea and muscle spasms. They have been giving her meds but they aren't working either long enough or well. They also gave her a muscle relaxer to help. She is also on magnesium and they tried her on potassium however it caused her a lot of pain. they will be trying some oral meds when she is less nauseous. Just letting her rest for the day. hoping for a quiet and some positive progress. Waiting for the doc to come by and see what his plans are.  I will update when I know more.
100
They have given her a muscle relaxer and some linocain patches. She is also trying some apple juice and crackers and if that goes well then they are going to try some pain meds by mouth. The oral meds are supposed to last longer. She is still in a lot Of pain and discomfort. Doc still hasn't made it in yet. The plan is to go to the regular floor if a room opens. Just hoping things get a little more comfortable. She is still really tired so hoping she can get comfortable and get some well needed rest.

8:30 pm
Heather is doing better.they are finally on top of the pain portion of it she was at about 6 or 7 now about a 3 on the pain scale. Nausea is better. She got to sleep abit they only have to check in on her every 4 hours now. Hoping that all goes well and she can get some sleep tonight. She has been able to talk some which has been nice. No surgeon today hopefully he will check In tomorrow. Still a possibility we may get moved out of icu tonight or tomorrow. Thank you all for your thoughts and prayers

quick update

11:45am
Heather went back to surgery. After surgery we will be going to ICU for recovery. They poked her three times for IV but they finally got it.They will be putting another IV when she is sleeping. They also will be giving her some hydrocortison for her adrenial insuffiency. will update  when i know more.

1:30
They started the surgery about 45 minutes ago. she is doing very well vitals are good. they made the incision to remove the bone to get to the brain. Anesthesiologist is very happ with how she is doing. 
they said that the time between now and my first post was getting her preped . 

230
They are sewing up her incision. All went well very minimum blood loss and vitals were good. They don't have any icu beds available. They are hoping to have one soon. there are some paitients that are moving from the floor. They are moving her to a recovery as soon as they finish closing. They will have a critical nurse with her. We are currently waiting for the doctor to come and talk to us. Should be within the next hour or so.

330
Doc just came she did very well they removed part of the skull and part of the 1st cervical vertebrae. They put a patch on the dera.She will be moved to recovery for awhile and then to the icu. He says not much to worry about just have to keep an eye on the incision. Make sure that there is no fluid build up. That can happens over the next couple of weeks.other than that they will be keeping an eye on pain management. 

445
She is having some nausea and the nurse. Isnt allowing anyone to visit right now. They say she won't know who I am. Giving them an hour more. Before I push somemore.

530
She is sleeping now. They have given her meds for the nausea. No visitors yet. They are continuing to keep me posted. I got to see her from a very far distance. So wish I could just hold her hand. This isn't easy but what u gonna do. Can only push so much. Before its not helpful. No icu beds available yet.worse case she could be in recover overnight 

745
Finally got to go back. She is super tired I'm sure it's the meds. Super sore . Looks like we will have a bed tonight. They are cleaning one as long as nothing critical comes in the room will be ours thank you for all your thoughts and prayers.

1000
Got a room. Still in a lot of pain on the head and neck. She is dry and nauseas. They have given her some more meds. Hopefully they will help her sleep. Will update more tomorrow. Goodnight  to all of u and thank you for your thoughts and prayers.

800th post being my last before surgery

We will be leaving for the hospital in 1 1/2 hrs.  Check in is at 9:30 and surgery is scheduled for 11:30.  My husband will update facebook and the blog as best as he can.
I can't believe that my 800th post is my last post before brain surgery.  Wow.
I will be back when I can.
don't forget to check out the post below for meal train info.

Nerves and Anxiety

My parents got here this afternoon.  My moms room is set up and she has begun unpacking.  My dad will be here at least a week and my mom around 8 wks.
I did my last grocery trip.  I cleaned house a bit.  I made my final to-do list. 
My neurosurgery is in less than 38hrs. 
Tomorrow Eli and I get lab work in the morning.  Ari has elimination clinc.  I meet with the neuro-opthamologist to check my intracranial pressure, and I spend some time with my family.
My nerves have fully kicked in.  I'm fidgetty and anxious and feel like crap.  I want to go to bed and sleep until my surgery AND I want to stay awake the whole time spending as much time as possible with my family.
I just want this to all be over with, all be a distant memory. 
Right now this all seems larger than life and scary and unimaginably hard.  I long for the day where things settle and life calms down.  Where we can breath easily, not constantly worrying about the next thing. 
I will do my best to get a blog up tomorrow as well.
Bob will post updates as he has them.

Here is the mealtrain link for those wanting to help out with meals.
http://www.mealtrain.com/?id=m1tp2lohwbbt
You can also send gift cards etc to the address listed. 
Lastly you can make a direct donation thru paypal to help go towards meals to eliasjourney@gmail.com
I thank you and so does my family!

overwhelmed

I don't even know where to start honestly.  So much is happening.  Like I said on facebook ny brain is in overdrive and my heart and soul are crushed.
Wednesday I met with the geneticist.  He is concerned that I have increased intracranial pressure.  He has called the neurosurgeon and spoken with him and I will be having special testing on Monday to check the intracranial pressure.  He wants to do some more testing and also wants to take over Eli's case.  He asked me to bring Eli in on Friday, as soon as he was discharged.
So Eli was admitted Wednesday afternoon.  He had his loading dose of IV Keppra that evening and his regular doses started Thursday morning.  He did pretty good.  He was discharged this morning.
We headed straight to genetics.  The geneticist is running further testing on Eli as he believes there is still a piece of the puzzle missing.  He's also concerned as Eli's RBC has been consistently dropping, his RBC are enlarged, his hemoglobin was lower,  his Iron is low, and his protein is low.  He's also worried about his hormone levels.  He wants to run a decent chunk of labs, but right now we can't take that much blood at once.  So we are going to have to slowly draw all of them.  At one point reading thru the recent labs, he said "heck we can't take blood, it looks like we might need to give blood."
Like everyone else he's concerned about Eli's intestines and how well they don't appear to be holding up.  We are having to slowly but surely switch things over and all these issues coming up today are pushing us in a direction that we aren't ready to go.
After we talked Eli for awhile he turned back to me.  He says that I have Mito and that he strongly suspects that I have an adrenal insufficiency as well.  He is speaking further with my surgeon and they will be following mito precautions as well as treating me for an adrenal insufficiency during my surgery next week.  They will also be doing the testing for the adrenal issues next week, to verify completely and get a full plan in place.
Ultimately he advises that we do some testing on the kids. Jace has CVS and Ben has autism.  Both of these can fall under Mito.
His current immediate concerns are getting thru my surgery next week and my recovery as well as Eli and the immediate issues I listed above.
I'm overwhelmed and exhuasted.  I've spent almost 5 hrs this week alone talking to the geneticist.  This isn't counting Eli's 3 days inpatient.
My brain is trying to process it all but my inner being is in such a tailspin that it's all so jumbled.
My household focus today will shift into family time.  My goal is to spend the next few days at home with the kids as a family.  My brain surgery is days away and I'm NOT ready.  I don't know how my family is feeling as we haven't had much time to talk, but I know they are scared, and frustrated and angry and so many other emotions.
Please keep me in your thoughts as I go into my surgery and recovery.  Please keep Eli in your thoughts as every day my little warrior battles thru so many issues.  Please also keep Bob and my kids in your thoughts as this is all so much for them.
This is so much for us all.
Next week we have been asked what we need.  Meals are always appreciated.  Babysitting.  housecleaning.  helping kids with homework.  taking the kids out play ball, or to a movie.  sitting with bob at the hospital.  you name it and it would be helpful.  My parents will be here on Sunday.  My dad will stay until I'm home, my mom will stay for my recovery.  Beyond that we honestly don't know what we need.  Until we know how the surgery and first few days of recovery go we don't have alot of info.  The first few days I will be in the Neuro ICU so visitors are very limited.  Please call or text Bob before coming up.
Bob will update as much as he can.  Always feel free to text, call, or email.

thank you and love to all!

busy busy

Today will be a Loooong day!
This morning I have my first appt with genetics.  Then I have my PAT appt and testing to go over anesthesia and everything for my surgery.
Then this afternoon Eli will be admitted and tonight he will get a loading dose of IV Keppra.  He will be inpatient for atleast 48 hrs to get it permanently switched over to IV and to get his levels up.
I will update soon.

quick and brief

Like always it's been a bit since an update.
So much has happened.  December was hectic.  Eli was inpatient 3 times. The first starting to get sick.  The second he had full on RSV.  That was really rough for him to get past.  The 3rd was hickman issues.  At first it wasn't drawing blood, then it wouldn't flush.  They ended up having to surgically remove it and replace it with a different hickman in a different location.  It was a mess of a month.
Eli is also still struggling with absorption issues.  We have had to switch 1 med over to IV and will be switching another over next week.
Eli will be admitted on January 2nd and will get a loading dose of Keppra, followed by regular doses.  He will hopefully go home on Friday assuming there are no issues with his bodies response to the IV Keppra.  We really need to get his keppra levels up.  We are also working on his lovenox levels as we can't seem to get it spot on.
My surgery is on Jan 8th.  A lot of feelings and emotions surrounding all of that. The holidays kept us busy for awhile but the last thing now to focus on is Eli's upcoming admission and my surgery.
I'm not ready and keep trying to talk myself into rescheduling, even though I know that won't help at all.
I will get more updates up before my surgery!

Hell of a Week

Eli was hospitalized Nov 30-Dec 1st.  He was sent home assuming that he would get worse, but far better to be home then in patient around more germs.
By Sunday Eli was starting to struggle.  By Monday he was running a temp, vitals a mess, lungs sounding yucky, and requiring O2.  For sunday and monday eli only peed 3 times in 48 hrs.  By Tuesday he was considerably worse and was needing quite a bit of O2 and alot of extra breathing treatments and such.  Still minimal pee even with fluid increases.  By Tuesday evening he was struggling hard and at this point we had been holding him upright for over 24hrs.  They approved 24hr nursing and they stayed up with him all night. 
Wednesday morning Eli was admitted to the PICU.  His sats were low, his resps were 60-70 and his heartrate was super high.  Temp 102.8 and he was requiring more pain meds and breathing treatments than we can even run at home.
We learned on Thursday that Eli has RSV and pneumonia.  Both lungs were hazy.  Alot of gunk settling into his lungs and alot of trouble moving it all.  They started him on a pretty intense regimin of breathing treatments, CPT, and cough assist.
During his hospital stay alot happened.
His lovenox (blood thinner) levels aren't enough.  He had a major bleed inpatient, as well as clotted off 2 needles.  Strange combos.
He was switched to IV robinul as it was apparently clear that his body isn't aborbing the robinul thru his J tube. 
We also learned that his seizure meds aren't being absorbed either and have had to increase them.
We've had to increase his IV fluids as they just aren't enough to keep him well hydrated.
He had a modified upper GI (barium placed into his G tube) and his fundo is in tact and isn't causing reflux.  So we now know that for sure all of these choking spells are from secretions not refluxing. 
Eli came home late Sunday.  The hospital is full of RSV, Flu A and B, pertussis and rhino virus.  Eli has had pertussis twice so the goal was to get him out of there and get him home where he can be better protected.
He's still struggling.  Temps still, wacky vitals, alot of gunk in his lungs.  Requiring a whole lot of suctioning.  Still can't get him even weaned down on the O2, let alone off of it.  Last night he started having trouble maintaining his body temp, which is normal for him usually, but this time it's the opposite.  His extremities are constantly cold with a slightly delayed capillary refill.  He's NEVER been too cold.  Eli's body has always run super hot.  So this has been a new strange challenge as it's not something we are used to doing, keeping Eli warm!
Yesterday he also had all of his kidney scans.  There is some big improvements to his UPJ obstruction.  His surgeon is really happy with what he saw on the scans and so are we! 

In other household news....the world very clearly didn't stop.
Both bob's car AND my van broke down in the same day...Sunday.  Bob's car is assumed dead.  My van was towed to a shop.  Come to find out while it was parked in the hospital parking garage for a week that it was attacked by a squirrel or mouse.  They chewed thru my spark plugs, my O2 sensory and some other thing that I can't remember.  Ended up costing $450 to repair!!!  The mechanic saved all my parts and has suggested that we file a report with the hospitals parking garage.
Bob, Ben, Ari and Lauren are all sick.  It appears to be the same thing that Eli has.  Sadly for them it has to run it's course.
Last Wednesday Emily and Jace were both sent home with the stomach bug.  Wednesday 70 kids were sent home with it, Thursday 85.  The health dept ended up closing the school on Friday and they did a deep cleaning and de-sanitizing over the weekend.
Jace had his renal and testicular scans last week as well.  Lauren was able to take him.  His doctor (also Eli's primary doc) came to Eli's hospital room that evening.  He informed me that he was sorry to be delivery more bad news.  Both of Jace's kidneys are very small for his size but appear to be functioning well.  The biggest issue is that both of Jace's testicles are in his abdomen stuck with hernias.  He is putting in a referral and  Jace will need to have surgery.  It is unsure right now if they will be sterile or functional after being inside for 9 years.

We finally got the christmas tree decorated last night.  Christmas is right around the corner and I'm so not ready.


I'm pretty much done with it all.  I'm exhausted.  My surgery is in 27 days.  I feel as though the world is beating the fucking shit out of me.  Everything that could go wrong is constantly go wrong.  I don't know how much more I can physically, emotionally and mentally handle.  I'm struggling right now to keep going thru each day.

I will get more updates up soon.  I've got so much to get done today, and a sick Ben and Eli home!

Super Quick update

Eli is a bit more stable this morning, although definitely still struggling. We are getting pee, but his doc is still keeping his fluids running high. His temp came down some but is on it's way back up. Resps and HR still up there. He got a tiny spurt of awake this morning and sat up with his ipad but that wore him out. The docs suspect that he has RSV. They will be bringing him into urgent care for the day on Friday to start the IV robinul. Until then the plan is to hopefully stay home and keep working our way thru it.

Struggling

Eli is really struggling.
He has hardly slept the last 2 nights.  He's been up choking and requiring alot of suctioning.  last night he started not being able to keep his O2 sats up without oxygen.  He was needing suctioning every 15 minutes.  His temp went up, which left him with a high hr and resps.  By this morning he could barely sit up or open his eyes.  He has spent the entire day sleeping and is on O2, needing suctioning and still running a fever.  Yesterday he only peed twice and today isn't going any better. 
This morning his primary doc and I had a long talk.  He's starting Eli on antibiotics.  We also discussed the options we are left with to deal with eli's secretions.  The goal is to get Eli started on IV robinul, hoping that this will allow his system to absorb it better.  If this doesn't work the next option (and last option) is a Scopolamine patch. 
We also discussed the seizures and the neurological changes.  Eli's keppra levels came back incredibly low.  Again either he's outgrown his dose, it isn't working for him anymore, or his body isn't absorbing it properly.  For now he's having us up the dose.
He's thinking that there are multiple things going on here.  The seizures, the secretions, and Eli being sick.  He doesn't believe that fixing 1 will fix all.  He's also not sure right now how much of this is disease progression and how much of it is fixable issues.  He told me he doesn't want to make any promises as he isn't sure. 
He and I discussed the suggestions from the new palliative care doc.  He really likes her and trusts her thoughts and instincts.  He believes that she will be a good fit on our team. 
We also talked about how we hate progressive disorders and how I'm not ready for another progression.  How I'm not ready to lose something.  I'm not ready to take a step back, knowing that there is a chance that we will never regain ground.  Rarely have we regained ground in regards to Eli's health and interventions. 
I'm not ready.  I wasn't ready to learn the true meaning behind the word progression.  I wasn't ready to watch my child suffer thru something this torturous.  I'm not ready to hold my child while he's choking knowing there is nothing I can do.  I'm not ready to feel his body limp against me because he doesn't have the energy to hold himself up. We've been here before and I'm not ready to be here again. 
Please keep our family in your thoughts.  Keep my tiny little warrior, eli, in your thoughts as it's so hard for his little body to fight thru all of this.  Please keep our oldest 4 in your thoughts, as it's just as hard for them to watch Eli struggle.  This round has come on fast, and just yesterday afternoon they were able to sit up and play with Eli as he followed them thru the house.  They will come home from school today to find a very sick little man unable to sit up at all.  Please keep Bob and I in your thoughts as we have hardly slept for 3 days.  We are exhausted and having to make big tough decisions.  Never a fun mix.
We will update as we can.

Admission and a THIRD birthday!

What a weekend.
Friday Eli was really struggling.  He was choking quite a bit and started to run a fever, as well as incredibly high resps and a high hr.  We ended up calling the doc and they suspected pneumonia.  Off we went.  Eli ended up being admitted and they ran cultures on labs and urine.  The choking episodes are really causing his little body to struggle.
Eli was discharged on Saturday, his 3rd birthday.  We had a quiet evening at home and he was able to open his presents and spend a bit of time with the family.
He had an incredibly rough night Saturday night and was up choking a large bulk of the morning hrs.  He slept in Sunday and has had countless choking episodes today. 
The docs have tried to change around his meds but so far no change.  While we were inpatient we met with a Palliative Care doctor and she is going to be joining Eli's team.  It's time to have some serious quality of life talks and begin to discuss some "out of norm" options for Eli.  She has some ideas and we are definitely on board with discussing them and working out a better plan.  It was really refreshing to chat with her and we are going to be scheduling with her for a full sit down conversation. 

I woke up this morning sick.  I've got a sore throat and a bit of a cough.  I'm definitely hoping that it doesn't progress as I can't afford to be sick. 

I will get more updates up soon.

It's Wednesday Already!!!

We ended up talking with Eli's primary doc again on the choking.  The newest meds have made no difference.  The last guess is the robinul.  They are increasing his dose over the rest of the week and then if that's not enough then another increase on friday.  If that still doesn't make a difference then they will do some exploratory things under anesthesia to try and figure out if we are missing something.  We were here so long ago and are not ready to be here again.
Eli also appears to be having a potential reaction to the neurotin.  We have seen what are possibly breakthrough absent seizures as well as he is either very sluggish or very intense.  He is also tripping and falling and running into things way more often than normal.  Neurologically something has definitely shifted.  He's also struggling with body balancing of fluids.  He's bloated, but dry. 

I  met with my orthopedic surgeon again today.  My hand incision has been struggling and continues to open up.  He asked me today if I have been diagnosed with a thyroid issue or a metabolic issue as that's when he sees these issues.  I'm also struggling to use my hand and the muscles are tight, my thumb is now pulling into my palm some and I have limited wrists movement.  Still having trouble gripping things and major loss of strength.   It hit me like a ton of bricks when he asked if I had a metabolic issue.  He is one of the docs that hasn't been involved in the Mito workup and knew nothing about the suspicion.  It terrifies me that so many doctors are independantly coming to the same damn conclusion.  The surgeon has taught me a new way to steri strip and is sending me to some intensive OT.  I start the OT on Monday. 

Some of my testing has come back and my primary doc is calling around to get me into a Geneticist.  We know how much time this takes, but are hoping we can get this done fairly quickly. 

We will also be meeting with a lawyer this week.  We will be drawing up a will.  It's something I feel we shouldn't avoid.  I think I will feel more comfortable if this is all done and prepared as a just in case.  I never imagined that at 33yrs old that this is something I would ever consider.  I don't want to think about these things, let alone say them out loud, and write them down.  But alas here I am.  No we don't think I will die.  But yes we are being realistic and knowing that some major things are coming up and with any major thing comes great risk for complications and unexpected turns.  We want to be prepared.  We have that responsibility as parents to be prepared.  We are now even more thankful that we have been seeing a grief counselor for months, before my journey really began for myself.  She has been an amazing support and a place for me to openly state my thoughts and fears, and be able to plan and talk out loud. 

Right now we are chugging along best we can.  We have begun Christmas decorating and are trying to throw ourselves into the holidays as much as we can.  I am getting a better control over my emotions (atleast at this point) and have done a better job of staying in the numb realm during the main parts of the day and only fully letting the emotions roll thru when the kids are either at school or late at night.  This may not be the options that therapists all push for, but nothing changes the fact that I'm the mom to 5 young children...4 of which already have to deal with the reality of their little brothers illnesses. 

I will continue to keep some updates coming over the next few days.
And don't forget to check out the post just below this one for a slideshow of our family photos.  They turned out absolutely amazing!!!

Family Pics

I don't have time to get up a full blog post right now but just wanted to share the link for our family pics!  Enjoy!

Family Pictures Slideshow

Family Pic and Updates

Saturday we had family pictures done.  It was alot of fun.  So far we have a sneak!

We spent the rest of the day at the park and relaxing as a family. 

Sunday the big 4 went to the farm with Lauren for the day.  Bob, Eli and I went to church, ran errands and had some quiet time together.

Monday I had an appt with my primary doc.  We regrouped from everything that has been going on. She began testing me for mito.  11 tubes of blood and 1 cup of pee.  She also is testing me for Factor V Leiden.  She really wants to verify if I have the same blood clotting disorder as Eli before I have brain surgery in January. She re-ran my anemia labs and if my B12 is still really low, then it means my body isn't absorbing it and she will switch me to B12 injections.
My hand is still struggling to heal. The incision doesn't want to close up, and I'm still struggling to move my fingers and wrist. The surgeon will be working to get me into OT next week.

Eli is also having a rough time. He's choking and gagging so much. His sats are dropping and he isn't moving air well. Then afterwards his lungs are really wet and he's worn out. The docs originally thought it may be his stomach so put him on more meds to try and help his stomach move, but no change. So now they have added a new med to try and help calm all of the nerves in his stomach. They think the nerves are in overdrive, hypersensitivity. The ultimate suspected reason for all of this is that Eli's body has built up an immunity to his robinul. This is a worst case scenario. We are worried. We avoided a trach about a year ago, and are fearful that it will be brought up again. Eli's restless leg syndrome has also been in full swing lately. He just got a weighted blanket yesterday from his grandparents for his birthday. The docs are hoping that if he sleeps with it that it might be just enough pressure on the nerves to keep things calmer during sleep.

We ended up heading to Wichita late in the evening Wednesday. We spent thanksgiving day with my family and then Bob, Eli, and I headed back here yesterday afternoon. The 4 oldest are hanging out with my parents until Sunday afternoon. I'm looking forward to some quiet time around the house these next few days. Bob and I are planning on going out for a much needed date night tonight. Today I may go do a touch of black friday shopping but nothing to major.

This morning I have another nurse interview. The agency is working hard to find us 2 more RN's. We are going to need round the clock nursing during my surgery and immediate days in the hospital, and then nursing 7 extended days a week during my at home recovery. Currently we have nursing 6 days a week 12 hrs a day. So they are having to find 2 more RN's to help cover such extended hours. I'm hoping to get both new hired and trained during the month of december. The goal for the 1st week of January is to simply spend as much quiet family time together as possible.

The oldest 4 are ok. They are so busy with school and choir and violin and math club and student council and book club and church and friends and so many other activities that they participate in.
The kids now all have their own bedrooms after some basement re-arrainging and they are loving it.  The youngest 3 (Eli, Ari, and Ben) all have bedrooms on the 2nd floor down the hall from Bob and I.  Emily and Jace now have bedrooms in the basement.  The kids also have their own family room, complete with Tv and couches.  They absolutely love it.  We are glad we were able to come up with a way to allow them to have their own space.  They are busy decorating and organizing and they are all hoping to get a few more decorations for their rooms come christmas time!

As always we have alot going on. Emotions are running high. I'm doing the best I can to appear as strong as possible for the kids and for friends and family. I'm exhausted and feel like crap each and every day. I feel rushed as my surgery is only 46 days away. There are so many things I want to get done and ready and organized. Now that Thanskgiving is past that throws us straight into Christmas and this is a huge holiday for our family. I'm trying to constantly remind myself to be in the here and now with everyone but my mind can't stop. I'm scared about Eli's instability right now. I'm scared about something happening to him while I'm in surgery or the hospital. I'm scared about the fact that I'm the only one in the world who knows EVERY drop of Eli's medical information and care. I'm scared about having 5 children and going in for brain surgery. I'm scared about what could go wrong. I'm scared for the recovery. I'm worried for my family and caretakers. I know the mental, emotional, and physical strain and exhaustion that comes from caring for a sick loved on. They will not only have Eli, but me now too. In short..I'm scared. And nothing makes it better.

I will update again soon.

checking in

It's been alot. 
I had surgery on november 2nd on my right hand.  They ended up having to cut 2 ligaments and shave down my tendon.  I got my stitches out and large bandage removed 1 wk after.  I have a smaller brace now and am able to start moving my fingers, but not my wrist.  I'm not able to hold anything yet and am still having to only use my left hand.  that makes everything very slow and frustrating, but I'm slowly figuring it out.  Next week I get to start practicing with my wrist and if still struggling then he will start me with some occupational therapy.
I also met with the neurosurgeon last week.  My surgery is scheduled for January 8th.  He said I will be in the neuro icu for a few and then on the floor for a few.  Then a minimum of 8 wks recovery at home.  We are rushing to get life set up.  We have so many things to organize between eli's nursing care and ben's respite worker. 
I meet back with my primary care doc next week.  The docs have all decided that we need to run some more labs, do some hearing tests, discuss my vision loss more, and send me to a geneticist for.. yes as most of you have guess...mito testing.  It's been talked around for a bit by us and the docs, but is now being strongly suggested.  We haven't said anything up till now, but we are being asked frequently so it's easier to simply mention it at this point.
I'm exhausted and sore.  My mind is constantly spinning.  I can't completely focus on anything, although my mind is always going.  I've moved past the crying phase into numb.  I've been in the numb phase many times as we have made our way thru Eli's journey, but it feels strangely unfamiliar when it's in relation to my journey.

Jace's GI issues have been flaring and his GI doc has been working hard to get it back under control.  He's had tests run and meds changing.  Hoping to see some relief for him quickly.

Eli is keeping us forever busy as well.  He's back to choking and gagging.  It's not yet as often as it used to be but alot more violent and large o2 drops (70's and 80's).  we have been draining his stomach frequently to try and help.  His Gi doc thinks that the nerves in his stomach are becoming so sensitive that any sensation is causing them to fire.  He's also concerned that Eli's body may be building up an immunity to his robanul which is VERY bad news.  They are changing around some of his meds and hoping to see some changes.  If this doesn't help over the next 2 weeks there will be more changes that bring more risks. 
We've also been working hard on Eli's vision.  He's having a full functional vision evaluation next week.  It's very clear that his depth perception and peripheral vision are shot.  we are hoping to find ways to strengthen them and help him be able to safely move around unfamiliar environments independantly.  In our home we use red tape on danger areas and we never move furniture. 

The other kids are staying busy.  Alot is on their plates and on their minds.  Our kids are so strong and amazing!

As my hand strengths returns i will try and update more.  this update has taken almost 1 1/2 hrs to type.