Thursday, February 23, 2012

Stubborn, maybe. Hard-headed...NOT

When we do something, we do it right.  We Colemans are not halfway kind of people.  We didn't set out to be, "If you are gonna go...go BIG," but we apparently do it without realizing...it is as easy as breathing.

So two weeks ago, while I was talking to the pharmacist with Will's IV company and rescuing my granddaughter from the wrong side of the bed where she was stuck, I managed to slam my head into the corner of the dormer in Caroline's room.  Next thing I know, I am face down on the trundle bed, still talking to Lonnie, Chloe is still screaming, and I am trying to sound as if everything is perfectly fine while discussing how many bags of fluid Will will need this week.  Here, I am in intense pain and can't hear for the screams, but it is all fine.  Really.

Well, I ended the phone call, rescued the child, and wrote some ridiculous facebook status about my life being a country song.  Went through the day with a sore spot on my head and a developing headache, but what do you expect when you slam your head into a dormer corner?

So I drove the kids into town and waited for them to finish their lessons while the headache worsened and I was getting really tired.  Grandkids were napping in the van, so I sat quietly and waited.  Having a boatload of children will make one tired, so again, no alarm bells.

But on the drive home...alarm bells started clanging really loudly over the ringing in my ears and the dizziness and nausea that were quickly setting in.  I pulled over, texted that info to Billy, then drove home.  The rest of the night is a bit of a blur.  I could type (uses a different pathway of the brain) but speech was getting challenging.  When Will asked me a question and garnered a blank stare, he texted Billy to find out when Billy was taking me to the hospital...where I could not remember the year (Um, I know it is in the 2010's...I think.), my phone number (which I have had for at least 15 years), or my social security number (which I have had for a lot MORE than 15 years).  Hmmm...oh, and just getting to the ER involved turns and curves which required me to laboriously inform Billy that if..he...did... not...take...them...more...slowly, ...I...was...going...to...throw...up!

The CT was clear, there was no brain bleed.  They gave me pain medication, I requested the wonder drug Zofran for the nausea, and they sent me home to rest quietly.  Which I then proceeded to do for the next...week...and still was not right.  So back to the doc we went...who then sent me for an MRI...which then set off this weird shaking, staccato speech, rapid blinking event that landed me back in...the ER...on my birthday.  Really.  I know how to have fun...on my birthday...and this was...NOT ..it.

So here we are...two weeks later, and I am better but still not...back to normal.  I can almost consistently talk in complete sentences that don't take five minutes to deliver. I still cannot multi-task well, and lots of noise and bright light are still painful.  That buzzing in the ears is annoying, but it stays to a low roar until I get tired, which is when most of the symptoms increase in intensity.  Driving is still an issue, especially at night with the lights. You don't realize how MUCH you are multi-tasking while driving until you can't multi-task. 

So I sleep...a lot...and rest...a lot...and have friends who handle the driving...a lot.  Fortunately, we have a respite home health nurse who has been helpful with William who has been atypically cooperative by being moderately stable during this whole event.  We don't know how long my recovery will be...we were essentially told a week to a year....we are just hoping that it is closer to a week (which I realize has already passsed...a couple of times!).  I have a race in 6 weeks...it would be kinda nice to run it...actually...it would just be nice to  this run year...and not IN a year.

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...


Sunday, September 4, 2011

Summer Draws to a Close

Labor Day is the traditional end of summer...and it has been a summer.  We've traveled to Florida and the Outer Banks, have had three children break bones, had an earthquake and a hurricane. The younger children participated on a swim team for the first time ever and I signed up for my second half marathon.  It was busy, hectic, and insane (which seems redundant unless you actually live through it!  Then it makes sense!) season, but as it draws to a close, we can look back and say that I'm so grateful that we survived it all and enjoyed most of it.  The kids experienced snorkeling and kayaking and restaurants every night for a week but also learned that they could do more than they thought they could when asked to swim one more lap when they were really tired.  There were no excuses...not even for the drama queen with the bright green cast on her arm.  :)

This afternoon, while I should have been reading my developmental psychology textbook, I was instead catching up on my friend's blog, Deo Volente.  http://eightbawl.blogspot.com/  She had posted about homeschooling and the fact that she wasn't looking forward to it, but she believed that it was the right thing to do.  So often, especially in the home schooling realm, we hear the excitement and the thrill of starting the new year, but how often do we hear that it's hard work, exhausting, and can actually be insanely monotonous.  Then there's the overwhelm you feel that the laundry is just piling up because you really need to read, The Big Thicket to your kids and this small group of little, or not so little, people will soon be a rioting mob if someone doesn't start dinner and soon! 

So here I sit at my desk tonight pondering the new school year.  Andrew is now at the local community college, and Chris will be taking one class there as well.  That leaves Chris's other subjects, William, and the three youngest.  The current plan is for me to teach Chris and Will while Billy alters his work schedule so he can handle the younger three.


I have been receiving text messages and emails asking if things here are ok because the blog hasn't been updated in quite a while.  Will is doing ok...stably unstable is my favorite term.  He has a narrow margin so he gets sick very easily and very quickly.  He has begged to not go to the hospital through two illnesses this summer...I gave in and did not take him and regretted it both times because his recovery was so much more difficult and prolonged.  I won't make that choice again. 

Caroline has lost weight which is a fairly large concern.  She is supposed to drink a Pediasure every day (which she hates and it is insanely expensive!) and a milkshake (which she obviously does not mind at all!).  The hope is that the dense calories will help her recover some of the weight she lost and help her grow.  Her initial MRI was inconclusive and difficult to read, so a second was performed.  We are still waiting on the results of that one.   I am mailing the disc to Dr. C in Cinci so he can evaluate it.

So as fall looms, I look at the calendar and wonder how the next few months will actually look.  I have trepidation and concern but I am also grateful that I have a sovereign God who knows all that is happening and is at work within my family.

Wednesday, July 27, 2011

Just Keep Swimming...


I have actually tried to update the blog since we got home, but just as I hit the "Publish Post" button, my computer hiccuped and it disappeared.  That happened at least twice, so, the slow learner that I am, I will click that little save button a few times as I type so maybe, just maybe, this post will actually make it to the cyber world.  :)

The trip home was fairly smooth.  We stood in line in Miami waiting to check our bags and our cooler of remaining IV supplies.  I was armed with letters from Dr. T and documentation from the IV company, but we did not need any of it.   We did realize that our seat assignments for the second leg of the flight had each of us with a window seat...which means that we were scattered throughout the plane, and no two of us were sitting together.  That's manageable for Andrew and Chris and maybe even Will, but for the littles?  Um, I don't think so. 

I kind of expected Miami security to be a challenge...but it really wasn't.  It took forever, and they scanned my carry on three times.  The whole stethoscope and bp cuff  thing drove them nuts.  Will of course had to be patted down since he was on an IV, but the agent was fabulous.  He chatted with Will the whole time and basically explained what he was doing, but he distracted Will with conversation.  When he finished and I finally gathered all of our stuff, he gently shook my hand and quietly whispered that he wished us well and that Will was a cool kid.  He did not have to be so gracious with Will, but he was.  And Ben and Caroline were both teasingly asked for their driver's licenses by TSA agents, so they thought the whole process was hilarious.

We grabbed lunch, flew from Miami to Atlanta, and arrived in Atlanta early.  But we sat on the plane.  And were detoured to a different gate.  And we sat on the plane.  And when we finally arrived at the new gate, it was closer to our next gate, but the hour we were supposed to be laid over was disappearing rapidly.  Billy was toward the front of the plane, so he headed to the new gate to try to get better seating assignments for us and the littles.  Caroline would be okay sitting next to a stranger, but the stranger might be ready to mutiny by the time his ear has been talked off and he finally arrived in Richmond...

Those of us in the very back of the plane finally disembarked and raced to the next gate...where Billy was still waiting for an agent to appear.  He then headed to Starbucks for me (cold, caffeinated, and caloric were the requirements) while I stood in line to manage the seating issues.  For the first time in all four flights...we ended up together.  Literally.  She maneuvered us to the very back of the plane where we had all of one row and the three seats behind.

The flights were otherwise unremarkable, and we safely arrived in Richmond where we were met by the same limo driver.  The drive home was slow due to traffic, but he regaled us with stories of his other job in law enforcement.  I asked the kids what their favorite activities were...Will answered snorkeling, Billy loved kayaking, and Caroline loved swimming.  Andrew, of course, has a need for speed and totally loved the Wave Runners, while Chris was still complaining that I was trying to dump him off of my Wave Runner.   Everyone enjoyed the trip, which was a blessing of immense proportions.

Will did, unfortunately, become ill not long after we arrived home, as did Caroline, so we have spent the last two weeks trying to get him back to baseline.  Tonight, he is sick again, so tomorrow (Thursday) we will either be at MCV or back at the pediatrician. He technically should have been in the hospital when he initially got sick, but he begged me to not take him.  If I had, he probably would have recovered much faster, but I understand his not wanting to be there.  But soon we won't have that option; he is really struggling.

So here's the rundown on all of our warped Coleman fun:

We had a blast in Florida.  We came home.  Will got sick.  Billy got sick.  Caroline's gut decided to not function, so we had to deal with that.   Caroline broke her arm falling off her bike.  Caroline caught a stomach virus.  Will is still sick...and now on his second antibiotic.  Will is sick...still...and may need IV antibiotics and a stay in our favorite suite at MCV.  Oh, and Ben broke his toe at a swim meet.   We Colemans know how to entertain the medical community!  We really should have an emergency department room dedicated to us. 

We appreciate the lovely thoughts and well wishes as we headed to Florida, and we are grateful that the trip went as smoothly as it did.  We are glad to be home, and are grateful that if Will did have to become ill, at least it was at home and not on the trip.  We are supposed to head to the beach on Friday, which we hopefully will be able to still do.  We'll know tomorrow...