Quick Updates

Super quick update.
I spoke with Eli's primary at length this morning.

1st.  Thrush/Yeast.  Nothing is working.  We have been battling this for over 2 months.  Right now his doc is stopping the latest meds for it and wants to see if it will come back full force or if it will not.  If it does he's out of ideas and will be turning it over to infectious disease for help.

2nd.  Heart.  He has spoken with Eli's primary cardiologist.  Babies are born with a fast HR and then as you get older it slows down to a normal pace.  For some reason Eli's heart didn't get that memo.  Long term tachycardia could be causing the SVT's and abnormal rhythms.  They are hoping to get good info from all of these readings from the heart monitor.  They are wondering if using beta-blockers would potentially help lower his heart rate, possibly stopping or atleast slowing down the occurances of these SVT's.  He gave us more details on what he wants done when it occurs and at what point we are supposed to head to the hospital for emergency meds to make it stop.

3rd.  Hydration.  Eli is just not getting enough fluids.  No matter how much we increase it just doesn't quite seem to ever be enough.  His doc is hoping maybe he simply needs more fluids every day instead of trying to play catch up.  He's dramatically increased his fluids to try and keep up with his needs.  Hoping this doesn't put to much stress on the heart and kidneys but he simply needs more fluids.

4th.  Poop.  He wanted to know how the metamucil was going and I gave him all the details.  It is definitely looking like we might not be on the right track still but we all agree to stay the course until atleast Monday. 

It's been kind of a crappy day.  Eli's fridge broke on the same day that they again increased his IV fluids.  He gets 4 different bags of fluids a day, formula, and tons of medications and syringes and such that all require refrigeration.  This is obviously a big issue that we are attempting to find a solution for.

We will all regroup and check back in on Monday.  We will also be running a whole group of labs then as well.  Like always we will update as we know more.

Heart

Eli is throwing us thru a constant revolving loop right now.

He met with his GI doc on Monday.  We are back to multiple changes.  He's taken Eli off his rotating antibiotics for the small bowel overgrowth.  At this point they aren't controlling it and we are constantly running the risk of building up antibiotic resistances from using them so frequently.  His intestines are also confusing the heck out of everyone.  He can have 1 day of diarrhea with 5-8 pure liquid HUGE stools and then the next day be so backed up that his belly looks 8 months pregnant.  He's still shedding intestinal lining and tons of mucus.  His GI doc has decided to try putting Eli on metamucil.  He's hoping that this might bulk things up but keep them moving.  So far it's not working.  His GI doc is confused about what his system is doing and he's not quite sure what to do differently.

Tuesday was a quieter day at home. 

Wednesday proved hectic. We started the day with an appt to the endocrinologist.  She is happy that he has grown 3 1/2 inches in 6 months.  (we've never had growth like that).  She is however concerned about his growth hormone levels and dosing.  She's also wondering if there are some more thyroid issues involved.  Running lots of labs.  Then  Eli's cardiac monitor went off more than 30 times.  At one point in the afternoon he was bright red rashy and on fire hot.  He happened to be on the pulse ox during this time and his heart rate went up to 230's and then back to 150's and back around.  Upon listening by his nurse, she was able to hear skipping beats and his murmor going wild again.  When it finally stopped and leveled back out the redness and heat went away.

Today Eli has been off all day, bumping into things, and falling over often.  Sloppy days are always rough.  When laying on his left side his heartrate is lower, on his back it's high.  Very positional today.
We spoke with his cardio nurse and she has scheduled him with the lead cardiologist for next Thursday.  They will be running another EKG and an ECHO.  They are getting so many reading reports from the cardiac lab right now and are trying to keep up with reading all of them as they come in. 

Right now we are just hanging on and hoping that this is nothing major.  My brain keeps trying to override everything and tell me that it's ok.  That goofy things can happen and go away, never to be seen again.  The thing is I can't remember a time where something went away.  Symptoms stay, meds don't get DC'ed without getting replaced, docs never switch from primary team to consult only, equipment is never temporary.  Promises and speculations and thoughts and expectations NEVER happen.  I remember all the words.  All the feelings from the past.  I can hear all the docs saying temporary...then months later saying we are sorry but this is life now.  It's always changing.  Life is always changing and it's not fair.

Can't 1 thing get better?  Can't life improve?  Can't my little warrior get a day off??  Can't I fight these battles for him just once letting him simply be a kid?? 

We are worried.  We are unsure what's happening.  We hear the doctors speculations and thoughts.  There were 2 thoughts going into this on the first day a week or so again when he had his 1st known SVT's.  Those were A. It's a 1 time thing, a fluke OR B. It's Mito.  They thought it's possible that the mitochondria are breaking down and causing road blocks in his heart.  (This is also what they have already wondered about occuring in his brain.)  The first day the moment I heard these I tried to will myself to believe that "A" was possible.  That was the reason for the SVT's that day.  But my inner heart and soul felt that it wasn't so. 

Here we are a week or so later and we now know beyond a shadow of a doubt that it's not a 1 time fluke.  It's our new life.  I don't want a new life.  I want to go back.  Back to 17 weeks of pregnancy.  Back when I would lay there feeling the flutters of my little one growing in my belly.  Back when I rubbed my belly imagining raising my little one.  Back before the 18 week ultrasound when our world began to crumble.  I want our old life.  Our innocent healthy life.   Back when the hardest thing was picking out the perfect baby names.  I don't want this.  I don't want the names of medications and diseases and doctors and protocols to be the things constantly filling my waking thoughts.

I'm terrified.  Heart progresssion.  I can't go there.  I can't go down that path. 
We will be talking with his palliative care doctor and his primary care doctor more tomorrow and hoping to get some basic answers before cardio next week.  Please keep our little guy in your thoughts, and our family too.  This isn't the path we want to even be glancing down.  Not now, not ever.

We will update as we know more.

(In other less important news I seem to have picked up a cold and UTI.  The kids are possibly getting the start of my cold.  Spring break is winding down and the kids are back to school on Tuesday.)

Eli's outside adventure!

 

Here are some pictures and videos of Eli getting to play outside today.  The weather was gorgeous and he spent almost the entire day outside.  The pictures and the first 2 videos are in our backyard.  The last videos are at the school playground this evening.

Featured in these is Eli, Lauren (his primary nurse), Michaella (Ben's respite worker) and of course Daddy!

Enjoy!

 

 

 

 

This is Eli's newest addition.  It's his cardiac halter event monitor.  He will wear this continuously for atleast a month.

 

 

 

 

 

 

 

 

What a Day!!!

Eli woke up this morning beeping.  Bob went in assuming we just simply needed to reposition his pulse ox cord.  Not the case.  Eli's HR was bouncing up and down between 110 and 246.  It did this repeatedly for 20 minutes.  We of course immediately called his doc.  By this point his breathing was a bit goofy and his heart murmor was a mess.
He had us immediately bring Eli into urgent care.  Between the HR and the fact that pee and poop have been few and far between since Sunday he was concerned. 
So we get there and he gets a KUB (belly xray) and it shows he's backed up.  Then we meet with the doctor.  They order an EKG and a chest xray.  EKG looks ok at this point. 
They ran labs but we haven't gotten them back yet.  They spoke with Eli's GI doc and his cardiologist.  They decided with his heart history and Mito in general that they will be having Eli do cardiac halter event monitoring for a month.  He will have to wear it continuously.  In the mean time they are setting him up with his cardiologist for a followup and ECHO. 
So basically we know that Eli is having SVT's, but we don't know why.  They are concerned that the mitochondria could be breaking down and causing obstructions in his heart.
This changes alot currently in our life.  Eli's surgery will again need to be postponed as he is no longer cleared cardiac wise. Also this again throws another heart component into our life.  We aren't sure if this is another progression with Mito or just a one time "fluke". 
We were at the hospital for almost 6 hrs.  So now we are exhausted and my mind is spinning with all of the new info.  I will get more info up as we know more.

His primary doc just called.  The chest xray and labs are officially back.  Eli has pneumonia, lower left lobe.  So they are starting Eli on antibiotics.  Eli is still sleeping as he's exhausted from the day.  Now to figure out the heart.

Our "Set"

Sometimes people think that being a parent of a special needs kiddo is glamarous and exciting and always busy.  They picture it like a TV show "Set" with alarms beeping and people running around with IV's and syringes and medication and such.  The truth is sometimes it is like that BUT most of the time it's not.  Our life is like any other...sometimes even boring.
So here's what I've done?!
Wanna see a sneak peak inside of our special needs family life on Saturday March 2nd at 5:30pm???
I know my dear sweet hubby isn't in any of these pics but he isn't here right now.  Sad times!

Eli being incredibly ornery in the play room.  He's finally figured out how to climb up there but is a bit unsure about always sliding down the slide by himself.

A close-up of his ridiculously beautiful little face!!!

Ariana caught NOT cleaning her room.

Ariana with her NOT clean room.  She's been cleaning for 9 1/2 hrs so far.  She is clearly not done!!

Benjamin sound asleep.  He was watching Flicka for the 2nd time today but apparently was more interested in napping!

Benjamin in his favorite PJ's.  He's way to big for them and they are oh so worn out but he refuses to get rid of them and if he's not in school he LIVES in them!

Jace actually still awake for Flicka!  Cuddled up under the favorite blanket in the house.

His adorable face and the remnants of his sore lips from this last round of cold.  The cold is always so brutal on his face.



My preteen compete with her unmade bed, Bieber posters, and Enter at your own risk sign!

watching who knows what show on her kindle.  She's to old to hang out with us anymore!  :)

Mom finishing up the dinner that Lauren and I started.  Lauren and I made homemade gnocchi and now mom is using that to make gnocchi mac and cheese!

Lauren partly watching Flicka with the boys and helping Eli up and down the slide.  She's on her 6th day straight of work so she's clearly getting sleepy.  On the plus side she and I did curl up today and watch our newest episodes of "Chicago Fire" and "New Girl" while Eli napped!

Lastly ME!  Don't I look amazing.  Bummy clothes, hair a mess and not a drop of makeup.  Glamourous huh?  Just like all the TV mom's!  :)

 

Wishing your life was this exciting too?!  Like I said there are definitely moments of our life that are beyond busy and hectic and frantic.  Where sometimes it looks like the medical TV shows.  My complaint is that we don't have anyone that comes and cleans up the set after the fact?!  Totally have to look into getting those kind of people!  I would love it if they stocked the set too and made it all pretty and perfect and everything at my finger tips!  AMAZING!

Here's to hoping that everyone is having the same type of boring, mundane, NORMAL, HEALTHY saturday evening that our family is!