Tuesday, January 24, 2012

Not What We Expected

So here we are...still in the hospital for what I thought was going to be a fairly quick, routine admission.  I thought Will needed continual fluids with carnitine every 8 hours for a few days, then he would be back at baseline, and all will be well.  That isn't quite the way it worked out.

This admission has been anything but routine.  Not only is Dr. T unavailable, but the team of physicians that were treating Will were essentially unaware of the challenge that he can provide.  (Just ask his nurses... "May I take your temperature?"  "No, it is mine and you can't have it!")  For some crazy reason they really do like him, and they have treated him for long enough that they have a healthy respect for his medical condition and how fast his status can change...especially around 4 every morning.  The residents were skeptical, but their learning curve was fast and steep.

So despite all of the early challenges, things were finally settling in.  We had consults consulting and running tests, and fluids galore entering his veins.  His numbers were looking better...until 4 am...when he tanked...every night. 

Well, interestingly, he didn't tank last night...but that was because of a test that was being run that basically gave a jolt to his system to see how his adrenal gland would respond.  The short answer is...it didn't.  His initial labwork showed that his cortisol level was extremely low, and after the jolt they administered, it should have skyrocketed, but instead, it barely rose to the low side of normal. 

Dr. K, standing in for Dr T this week, was standing beside the endocrinologist when he stated that news, and she looked at me and said, "Not at all what I expected."  Well, apparently that makes three of us.  But upon reading about it, it makes absolute sense.  Will has been receiving more and more infusions but he is responding for shorter periods of time.  Something had changed, but I didn't know what.  I mistakenly thought that he had just fallen too far off baseline and needed time on continual fluids to give his body a break and return to "normal".  Not happening.

There is no cure here.  Man, but that sounds famililar.  And the question that everyone is asking is...what happened.  Mito happened.  The strain of the mito not working sufficiently has affected yet another system.  Progression happened.  We know that mito is progressive.  We know that things can change on a dime with it.  But when a doctor walks in and tells you that you have essentially lost yet more ground to this heinous diesease, then it hits like a punch in the stomach. 

It took a while for the news to really set in today.  I heard it, but I didn't really process it.  Then when things got calmer, I started reading and talking to the nurses.  Then it hit me.  Wow.  This does really change things.  This takes his fluid management to new levels.  When he gets sick, we won't be able to keep him home.  He will need to be in the hospital so his levels can be supported appropriately.  That means more hospital time...more family strain...more grief...and honestly, more work.  Tossing this lovely little variable into a fragile system really is incomprehensible to me at the moment.

What does this mean for today?  It means I am going to go to sleep soon so when his alarms start beeping at 430 I won't be cross eyed.  It means we will be here until the steroid we are now giving him reaches a level that helps stabilize his blood pressure.  That means we may go home tomorrow (Wednesday), and we may not.  It means we get to add a specialist and a medication to his current (what I thought was full!) arsenal of specialists and medications.  It means that caring for Will just got a little more...challenging...and not in a good way.

God is still on His throne, and the sun is still shining way above the clouds.  But, here, at the moment, it is gloomy and dark and stormy.

Monday, January 23, 2012

Middle of the Night Musings

It is 430 am.  I am sitting on my "bed" in the PCU  watching Will sleep while keeping an eye on his monitor.  I have had only 3 hours of sleep a night since our arrival here on Thursday, so why I cannot return to sleep is a bit of an enigma.

I sit here, watching his blood pressure and heart rate drop yet again and my heart is heavy.  While we are in the hospital, Will is fully loaded up on fluids and carnitine.  He basically is returned to his best possible physical condition.  Most people leave the hospital and need a period of recovery time.  But Will is at his best.  So, if at his very best, his vitals drop so significantly, then what are they doing at home while he sleeps when his vitals are typically lower?

We have had endocrinology and cardiology consults during this admission.  More testing will be completed today.  But I doubt they will find much of anything.  Between the mito and the brain stem issues, his autonomic nervous system is not going to function properly.  This is all likely just more of the same...a progressive disease complicated by a brain stem that is apparently not recovering from being compressed. 

The doctor is tossing around options, like sending Will home with continual IV's.  Lots of people live their lives always attached to their line. But Will has already stated that if living a more active life involved an IV every day, then he would sit on the sofa. As his mom, that was a difficult statement to hear.  I can only imagine what he will say if/when he is told that continual IV therapy is the next step for every day life...not just an active life. 

There are not words to express the emotions that flit through me during the middle of the night musings.  I listen to the beeps and alarms and realize that they are alarming for Will.  His bp is low.  His heart rate is low.  I fear what may happen if they drop too much lower.  I know that Will is in God's hands and that He has appointed a time for Will to be with us.  But I want to scream and cry and I want to pretend that he is just sick today and after this admission things will be better.  I want the doctors to find a reason for the precipitous drops in vital signs.  But I really do know that this is just more of the same.  I just pray that I have the strength to hear and Will has the strength to handle whatever news they give us...and that our family can somehow find the strength and desire to love and support one another in the midst of it all.

Friday, January 20, 2012

The Inevitable

Not sure why I delude myself into believing that I can postpone or avoid the inevitable, but as I sit in Will's room at MCV, I have lots of time to contemplate it.  Lots.  Of.  Time.

I have this incurable need to make everyone happy, and for me to say that Will needs to be admitted means that pretty much everyone in my household is less than thrilled.  Yes, they love Will and want what is best for him, but it makes life hard all the way around.  Billy is at work fielding issues from home.  Erlene has an extremely busy week yet is sacrificing her time to help with my littles who would like their mom home.  Will, of course, would like to be anywhere but the hospital, and the older boys get to fend for themselves or care for younger siblings which they have had to do way too often.  But, there are times when the inevitable has to happen and so here we are.

Dr. T is out of town, so we are pretty much being managed from a distance through a doctor that doesn't understand (and who apparently did not read his chart before entering the room) which makes life...challenging.  We were put in a real room (Dr. T is gone, so no one realizes that he is supposed to be in a monitored bed...but since we have walls, a door, and a window, we are not complaining...too much) but unfortunately, the nursing staff is not familiar with us, with Will's unique challenges, nor are they working very hard at understanding.  Combined with their inability to meet his dietary needs, this has become a really frustrating experience. 

It is so funny how we grow so displeased with what we have...and want something different.  We wanted a room, a real room.  Well, we got that, but it is at the sacrifice of better care for William.  So what we wanted wasn't necessarily what was best for us.  Hmmmm....

That being said...while it has been an experience fraught with frustration with residents (really?  We have previously had issues, but they have been resolveable.  Not this time!) and less than stellar monitoring of his condition, we are where we need to be.  He is on fluids around the clock, carnitine every 8 hours by IV, and he is back on his meds.    He was in really rough shape this morning when his bp, heart rate, and body temp all plummeted, but he is slowly coming back up to levels that aren't sending the nurses to the phone in a panic. 

How long will we be here?  No clue.  I wish we had better information, but we don't.  I miss Dr. T and her infintely vast knowledge of and care for Will.  :(  I am thankful for Abigail and Chris willingly staying with the kids and grandkids yesterday while Will and I headed to the hospital.  I am thankful for insurance that allows us to be here (despite now officially meeting that  insane deductible in one fell swoop!).  And I am thankful that Dr T is a phone call away.  I just wish all of this weren't necessary.

Wednesday, January 18, 2012

Remember Me?

Yes, it has been a while.  I like to think it's because I've been incredibly busy, which I have, but a good part of it is that I have to actually sit and contemplate what to say, and there are times where dwelling on the reality is just...too hard.  You can make it through the day by taking it minute by minute, but if you sit down and dwell on the full reality it's all just overwhelming.

Will attended a friend's birthday party in December.  It was cold, and the party centered around a full blown airsoft battle, and Will really wanted to go.  So, his brothers helped ensure he had sufficient gear, he spent the afternoon running through the woods shooting his buddies, and he had a blast.  One of the moms asked if Will was going to handle this ok, and I shrugged and said, "He'll be sick in two days, but this is the most fun he's had in ages."  It was also the most activity he had had in ages.  He has been in physical therapy for months, but Will was challenging his body in ways it hadn't been challenged since his Make-A-Wish trip.

Two days later...he was sick.  When he gets sick, he gets really sick.  And he crashes.  A lot. The next two weeks became a daily battle to keep him out of MCV while knowing it's really what he needed...but he kept looking at me and stating that he wants to be home for Christmas.  Can you blame him?  I just can't.  So we gave lots of IV fluids and prayed and gave even more IV fluids and prayed some more.

And he has been really difficult to stabilize since that time.  We keep infusing more fluids, and he just keeps crashing.  I talked with his physical therapist today and he recommended that I call Dr. T tomorrow.  The question is...do we put him in the hospital for a few days to give him a boost that will hopefully get him back to baseline, or do we just keep doing what we are doing?  What is the definition of stupidity?  To keep doing the same thing expecting a different result?  That's not working for me so well...When he gets 5 IV's a week, which we've been doing for a few weeks, then maybe we need an alternative solution?

So tomorrow I'll be calling the amazing Dr. T and seeing if she has any pearls of wisdom.

As for the lovely Miss Caroline...well, I'd like to give you answers.  But I don't have any to give.  She clinically looks like a candidate for surgery, but the neurosurgeon here states that her images don't support that conclusion.  We do have an appointment in Cinci in May with Will's neurosurgeon, so we'll see what he has to say.  She is currently at a sleep study to determine if sleep apnea is an issue.  It would provide another piece to the puzzle of how well her brain stem is working...Stay tuned for those results...I may actually blog them before June.  :)

If you have time and want to see what Chris is up to...check out http://candidcameraphotography.blogspot.com/2011/12/smoke-photography-next-up-how-to-take.html or http://www.wix.com/cmc451/candidcamera/main-page#!__main-page/about.  He's done some amazing things with his new camera...