Really.

Someone recently said how difficult this week has been and I laughed...then cried.  It really has been an incredibly difficult week, but hey, the year hasn't exactly been a picnic.  I always try to focus on the blessings, but the challenges really are overshadowing the blessings right now.  I know they don't but I am straining to see the sunshine.

In the last six weeks, I lost my dad with whom my relationship was strained, Will was in the hospital for a week, my 4 months of crutches ended in surgery, Will was just readmitted to MCV, and that night the incision of my foot reopened and I ended up in the ER of the same hospital as Will. 

I know that we will get through this.  I know that while Will is really ill, I will get to take my child home and he will talk to me.  A lot of parents don't have that opportunity.  Does that make today easier?  Not really.  I have other children whom I don't get to see, a husband who is stressed taking care of those children (with Erlene's help) and trying to work, a son who is angry that he is once again in the hospital when he really just wants to go home, and I am dealing with life in a hospital while still non-weight bearing and on crutches. 

I am thankful for the fact that my family does have meals in the fridge thanks to the generosity of friends.  That does make Billy's life more manageable and the nutrition of my children a little safer in my absence.  I am thankful that a wonderful doc is on service and Dr T is not on vacation.  I am thankful for insurance. 

But today.  It is just raining in my world and I would love to see some sunshine.

It's an All New Ride, Man!

Seven weeks ago I fractured a bone in the ball of my foot.  It takes skill to fracture this bone...and apparently it takes skill that I lack to mend it.  So, it's been seven weeks of get-to-know-your-crutches really well.  Seven weeks of crutching around Costco, swim meets, hospitals, home, and outdoor concert venues...and we have no idea when the close proximity to my tall, skinny, supportive friends will end. 

So this week at swim practice, we were decorating flip flops with team colors, when one of the moms laughed and said we should decorate my crutches.  Someone piped up and said, "They make crutch skins!" which set me off on a google search just because I was curious. 

What I found were gel crutch handles.  Skins are cool, but gel crutch handles are, well, amazing!  Those major callouses on my hand and the sore palms at the end of the day may actually have a solution?  No way! 

So I put them in my cart and saw the "crutch tips" link.  No, I don't need the snow and ice tips...it's been one of the hottest summers on record.  But it's so cool that they exist!  I found these spiffy pivoting ones.  No way was I gonna order them, but I did check mine for wear...just curious how many  miles I've actually put on them, and ...  Yikes.  Um, yeah, mine are a little cracked and...thin....like you can feel the metal through the bottom.  So, I put those racing-striped, pivoting tips in my cart and checked out.

And then I realized how incredibly geeky I have become.  I just got excited over pivoting, racing-striped crutch tips and gel hand grips.  These crutches have been with me for way too long.  I'm gonna get a brand new ride next week...kinda...and I'm like a kid at Christmas.  This is just so cool!

I'd love to order crutch skins, just because they are fun, but the practicality vs expense just doesn't seem...practical.  But new handles that ease fatigue and pain?  I'm all over that.

The broken appendage has definitely slowed me down and made me appreciate the ability to ambulate about my kitchen...or stand and make a salad. (You stand on one leg for forty-five minutes making dinner while trying to balance because you need to use your hands to cut something or move a pot but you need your hands to actually hold onto your crutches...)  But it has also made me appreciate those who have sacrificed so much for our country.  I was at a concert last week when an amputee with a military cut strolled in on his  crutches (which had a really cool skin on them!)...and one leg. While my bone is not necessarily healing at mach speed, and I may yet lose that bone due to an interruption in the blood supply to it, I'll keep my foot and will likely get to run again...eventually.  But this guy's life is forever changed...as well as his family's.  My family has been inconvenienced by my fracture, but it's temporary.  His is permanent.

So, it's all about perspective.  Yes, I'm geeked about my new ride, and I'm so glad that the technology to create snow and ice tips for crutches exists...but I'm more grateful for the sacrifice this young man made for me and my family so that I can have the freedom to be geeked over my soon-to-be-new ride.

It was a Coleman Kinda Day

The stuff that happens in the Coleman world really defies explanation.  When our friends have a "Coleman Day" we really want to apologize cause sometimes it feels like our name ranks right up there with Murphy.

A couple of weeks ago, Billy was working on the Coleman bus, which is really a Ford 15 passenger van, but one of the lug nuts was stuck.  So without thinking, he pulled on the lug wrench...which promptly popped off and hit him just above the eye.  I was in the garden and heard the clatter of the wrench hitting the concrete.  When I asked him if he was ok, he said, "I'll let ya know in a minute."  Billy is stoic.  Really stoic.  Anything more than'"I am fine." can range from ...he is fine...to wow, he just amputated a limb.  So I decided that running down to help him might be wise.

Which was my undoing.

Billy's eyebrow swelled immediately but with ice, he recovered nicely...not even a black eye.

My left foot, on the other hand, swelled later that night, and almost two weeks later, is still swollen due to a sesamoid fracture.  What is a sesamoid one asks.  Well, there are two little bones in the ball of your foot called sesamoids.  When my orthopedic looked at me and asked how in the world I fractured it, I laughed and said, "Um, skill?"  So, my foot is bandaged and in a fashionable (not!) boot, and I am on crutches, non-weight bearing for 4-6 weeks.  That upper body workout I keep trying to fit in?  Well...let me tell ya...I get it regularly now.

Did I mention yet that I am now in Cincinnati?  Yep.  I break this bone, end up on crutches, and less than a week later I am scheduled to fly with Will to Cincinnati for an MRI and two doctor appointments.  Our Angel Flight pilots were fabulous and all agreed to find some way of getting me in the plane.  There goes the pride.

We are being totally spoiled by Becky R, are resting, and are seeing friends we have not seen in months.  We even got to worship this morning in our "other" church, Faith Presbyterian.  Will has had his MRI and hopefully we will get the results on Monday when we see the neurosurgeon.  Wednesday we see the plastic surgeon, and Thursday we fly home.  I miss my family dearly, but am grateful for my Ohio family.  I cannot imagine managing all of this without them. 

Absence Makes the Heart Grow Fonder

I am sitting here in MCV yet again, waiting for William.  His port has developed issues over the last couple of weeks.  He was scheduled for a port study this morning, but after the issues of the weekend, it is being replaced...and it is taking forever because the previous port was deeply installed and is taking a while to get out.

So while I am actually sitting still, I figured I would finally log onto the blog and see about updating it.  And then I realized how long it has been since that was actually done.  So, how about the short version?  Is there such a thing?

Will was back in the hospital in April in what was one of the hardest admissions we have ever experienced.  It was really the first time that an attending just would not even try to grasp the situation which resulted in Will's care being less than what was needed.  The nutrition department decided to eliminate almost everything from his menu due to his food allergies, which resulted in their providing significantly fewer calories than he needed, which meant that I was buying his food and bringing it to him.  Needless to say, by the time we got home, my temper was in rare form and I was ready to shake some trees to ensure that this never happened again.  Dr. T graciously heard my complaints and is managing the situation for which I am grateful.

The brain injury is creating fewer issues in my life, but the night vision issues and fatigue and occasional "what is that word?" seem to still exist.  I am grateful for improvement but will be very happy to have this fully resolved.  I am once again cleared to run, but trying to figure out how to fit that back into our lives seems challenging.

Caroline currently is not a candidate for surgery.  While the mito question still looms, the surgeon in Ohio believes that her brain stem is fine and will not require intervention.  Good news is rare in our world, so it was really hard to believe, but we are indeed grateful for it!

The best news...of course is saved for last.  William "Cole" Winyard arrived Saturday early morning.  Caty had just sent the message that she thought labor was a myth, but alas, she learned otherwise.  :)  While pregnancy can feel like it lasts forever, it really doesn't...and at the end, you are blessed with a beautiful son. Cole weighed in at a lovely 8 lb 2 oz and appears healthy and happy.  Nana (I) certainly enjoy(s) holding him! 

So, Will and his new port are about to return to this frigid room we call recovery. I will try to be more faithful in the updates.  Life has just seemed so challenging in the last few months...

UMDF Central VA

So, for the last few years, I have heard about, chatted online with, and read about other people with mito...but we almost never meet anyone face to face who lives a life similar to ours...someone whose life revolves around IV fluids, doctor appointments, medications, insurance companies, and medical bills.  Rising gas prices affect us not because we may have to cut soccer from our schedule, but because we have to figure out how to cut something from our budget because the doctor appointments can't be cut and the medical bills still need to be paid.

Tonight, we got to meet them...a mom with whom I have been facebook friends but have never met, someone who reads the blog and was was so encouraging about how it helped her, and the mom who organized the new UMDF chapter who also helped pave the way with some of the local physicians.  There was a room full of parents who truly understand...and it was so encouraging to see that we are not alone.

I often contemplate a post to the blog, but I fear it is just another repeat of, "This is hard, but God is faithful." and that people won't want to read it anymore, so I don't write.  It is hard.  It's painful to watch your child sitting in a chair looking awful, and other than adding in fluids, there's just not much you can do about it.  You fear the worst, pray for the best, and fight with all your might against an invisible enemy.  But to know that putting it in words helped even one mom was such an encouragement.

So thank you, Judi, for having a vision for a Central Virginia UMDF chapter.  I know the time needed to get the job done was time that you didn't sleep.  Thanks to the parents who showed up.  And thank you, Dr. Cohen, for willingly dedicating your life to caring for and working toward a cure...or at least help...for those with mito.  You make a huge difference in our lives.

Living with this disease is, to say the least, unimaginably difficult.  Knowing that there were others out there is helpful...you can post questions and get answers and know that you aren't alone.  But actually sitting in the same room with others who understand?  There are not words...

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.

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.