Tuesday, October 27, 2009


Well, the decision was made. The weekly infusions have kept us out of the ER, so they are going to install a medport in Will to eliminate the weekly sticks for an IV.

A medport is basically a catheter that is inserted in a vein near the clavicle. It's a minor surgical procedure. (There is never a minor surgical procedure with a mito patient!) We should hear in the next few days when that will happen. It will make the weekly now-8-hour infusions a little more manageable since I will be able to hook him up overnight instead of all day. It also means that his veins won't be so full of scar tissue that they are unusable. He's already lost one vein, so we're trying to not lose the others.

In the meantime, Will and I are trekking back to Richmond tomorrow to get his back checked. It popped three weeks ago and still hurts. Xray showed no fracture, so we're not really sure why it still hurts.

So, that is the short version of what is happening...I'll keep you updated after I get some magical sleep. :)

Magical Sleep

I really didn't understand how amazing sleep was until I got to the point where I never got enough. It's like walking around in a fog with your eyes burning all the time and you still have to make major life decisions. Is it too early to make a New Year's Resolution to get to bed earlier? Yes, I do realize that I am writing this after midnight, but what's a girl to do? Poor Cinderella couldn't go to the ball until all of her regular chores were done. I should finish mine before I play or rest, right?

Um. No. Not right. But why did I have to get to 43 before I realized that? :) There are things more important in life than folding the laundry and sweeping the floor and writing lesson plans and checking your son's math paper. So, when your daughter giggles and you have to choose between chasing her or disciplining her because she simply does not wish to head to bed (She isn't old enough to understand the concept of magical sleep!), which do you choose? Tonight I chose to chase her and her brother up the stairs and tickle them into bed. It was fun and she went to sleep smiling. Why don't I choose that path more often?

I finally decided that I am just too tired to be fun anymore. The weariness of the last year has taken such a toll that I avoid going to bed because it means I have to get up to do it all over again tomorrow. If I stay up, I can deny tomorrow. I can deny that I'm lonely, that my son is sick, that I am just emotionally exhausted. That it is just too hard. But if I head to bed, then it all comes again so much faster. There is no quiet, peaceful moment in the day. Between school, meal preparation, child training, meal preparation, medical phone calls, insurance phone calls, doctor phone calls, oh, and meal preparation, there is never a quiet, peaceful moment. Then the little guys go to bed, the big guys do their own peaceful, quiet thing, and I'm finally able to complete a thought...only I'm too tired to complete a thought...so I deny that I need rest and I deny tomorrow. But what I miss is that it already IS tomorrow! :) So I go to bed late and I'm so not fun anymore.

I know I'm not alone out there...but aren't we so much happier when we are rested? Isn't it easier to deal with the meal preparation and the insurance phone calls, and the medical phone calls, and the loneliness when you have had that magical rest?

It's just a thought... Hopefully you are all reading this in the morning after a lovely 8 hours of sleep and not at 1 AM with bloodshot eyes like mine. :)

Monday, October 12, 2009

It is all about perspective...

I mean really. Cold is cold, right? But, then again, there's a whole different kind of cold when you decide to NOT check the weather and drive off on a beautiful, sunny October morning in a Jeep with no top and no doors...and then the rain moves in and the temperature drops about twenty degrees and you don't even have a sweater...and you are driving down the road at 60 mph. The concept of wind chill takes on a whole new perspective! Really.

That is when you really know who your friends are! :) I humbly called Erlene from Wawa where I was warming my frozen hands around a piping hot cup of coffee when I asked her if I could please maybe borrow a sweater? She lives a mile away from this particular Wawa and she loves me despite myself. So she graciously agreed to lend me one of Kelly's sweatshirts (I totally owe you, Kelly!) that I promptly put on and did not care that it matched nothing I was wearing and have never been so happy to see a hoodie in all my life. I even wore this hoodie into Bloom where I promptly dropped the cup of coffee all over the floor...

How much attention can you possibly draw to yourself? Driving a Jeep with no doors when it's 60 degrees while wearing capris and sandals that are way too cold for the weather and a hoodie that does not match. And then you dump coffee all over the floor.

But I was warm.

And when I got home, I very sweetly told my men that I would welcome assistance in putting the hard top back on the Jeep at their earliest convenience. Darn. Summer's over!

Wednesday, October 7, 2009

Homeward Bound

While we have no intention of getting lost in the woods, we are planning to head toward home this afternoon. Will has been stable for the last 24 hours so all looks good.

We have been really blessed while here. While the first 24 hours was challenging, we had great nurses, nursing students, and the doctors were able to communicate effectively which is incredibly helpful. They even called Dr Teasley who is at a conference to discuss a medication change they wanted to make. I didn't anticipate that it would go so smoothly, but they really were fabulous.

We also learned valuable lessons. Instant oatmeal in the hospital bag is a lifesaver for Mom, coffee's benefits are not to be underestimated, and a private room makes the time much more manageable. Oh, and recliners are not meant for sleeping! :)

Thank you for the emails and phone calls over the last few days!

Tuesday, October 6, 2009

Quick Update

Andrew played chaperone to two very tired parents last night. He brought Billy to MCV to spend the night with Will and took me home for some much needed sleep. It is amazing what rest will do for a person. :)

So, here's where we are. Will's fever is significantly lower. It still goes up as medication wears off, but it's not nearly as high as Sunday. (With autonomic dysfunction, the child can be burning up and a thermometer can get a different reading every time you take it. Even with the highest reading, it still may read too low.)

He still has GI issues, so the current discussion is when can they release him. Current philosophy is that he will remain there on fluids until the GI issues resolve because the threat of dehydration is so significant for him. (They put 3 liters of fluid in him Sunday!) When asked how long that might be, the answer was "maybe toward the end of the week." I requested to pull him off of his gastroparesis medication, but that medication also helps the mitochondrial disease issues. So it's a bit of a catch 22.

I need to head south so Billy can return to work...Thank you so much for the encouraging emails and phone calls and visits. They are deeply appreciated!

Monday, October 5, 2009


Will has been admitted to MCV main hospitl for an undetermined period of time. His heart rate needs to stabilize before they will discharge him.

More tomorrow...or actually, later today.

Flu...and mito

Sorry for the brevity, but here we are...We went to MCV this am with tacchycardia (our favorite problem these days) and the inability to stand without early signs of passing out. They administered 2 liters of fluids and sent us home.

Upon discharge, he was back to our normal, goofy Will. On the trip home, I literally watched him deteriorate. By the time we got home, his fever was 103. back to MCV we went.

Preliminary lab work suggests it is the flu. Which one we won't know for at least a day. He has received Tamiflu and another liter of fluid. His heart rate is still tacchycardic (came in at 120, has hit 154, and is now hanging around 118.) We are waiting to see if they plan to admit him or not. My presumption is that they will.

The flu is more difficult for William for a number of reasons. The main issue is that his body is busy expending its limited energy fighting the virus and can't make enough energy to support all of the other normal functions as well. Basically, he is in a major energy crisis.

At the moment, he is resting quietly, watching a movie, and waiting to see what the plan is. Billy is here with us. Andrew is holding down the fort.

We do have friends willing to step in in the morning...we will keep you posted as we learn more and have time.