Saturday, June 18, 2011

Learning, Changing and Some Fun.

It's Saturday, another week has passed. There's a lot to say and I've sat down to construct this post several times now. I just can't seem to find the adequate words. 

School has ended for Maggie and she'll be moving onward to 4th grade come August. Wyatt will continue to see his teachers (at home) through some of the summer. Jilly will be counting down the summer days until her first day of Kindergarten, which just happens to also be her birthday. A doubly special day!

I think the boy is doing "ok"...we wait and hope his body starts to mend itself a bit. He did start walking again since coming home from the hospital, which was great! His energy levels are greatly decreased and he sleeps a lot right now. And when he doesn't get to sleep and/or rest it throws his body systems into a downward spiral, which we saw clear evidence of this week. We visited Dr. R in his office on Thursday and walked away from the appointment with several new medications ordered and a hope that it will all help in one way or another...we'll see. Wyatt initially tried sleeping through the appointment and then finished it out by anxiously picking at his sweatshirt. His weight was down a few pounds which means the need for an increase in the calories of his TPN (IV nutrition). And while we were in the office Dr. R read through the results of the video EEG that he had done while inpatient. At that time they didn't see any active seizure activity (we didn't note any seen by us that evening, either) and things were once again under control, but it did show an encephalopathy. This term isn't new, it's what we expected would be seen in the study. It's been noted in most of the studies and/or procedures that have been carried out to view this body system. And as Dr. R explained to Wyatt, the little mitochondria in his brain are not working like they're supposed to, which causes the encephalopathy. The various types of seizures being only one result of this. His body is fighting to keep up with itself.

Right now he's laying curled on the couch, IV pole by his side with meds infusing into one lumen of his central line and TPN continuously infusing through the other, two long tubes extending from his draining thick, very dark brown/black bile from his intestines and the other draining green bile from his stomach. He's nearly asleep after waking up just a few hours ago. This morning he's cried and yelled, complained and melted down because he just doesn't feel good. He hurts a lot today and the narcotic pain reliever can only do so much.

When I look at my boy I can visually see the change in him....I do believe that's where the lack of words (and subsequently the lack of posts) are coming from right now. At the moment, it's difficult for me to really think about where he is and try to explain. I've found through doing this blog that it's hard for me to really "lay it all out there," not in a truthful sense, but telling all sides of how Mitochondrial disease affects Wyatt's body. There's a lot I don't talk about...partly being that it creates very lengthy posts, but it's also overwhelming to look at the "whole picture" much of the time. I've become quite accomplished at looking at the body systems that need the most attention in the moment, a triage of sorts. The systems in the focus change often as new needs arise, so eventually you may get the full glance. Or maybe I should just work on my "coping" skills and lay it all out there sometimes. I'll think about...

But in amongst the rough times and during the good, we've been having a memorable time. The Philadelphia Phillies played a double header on Wednesday, a game in the middle of the day and another in the evening. We were fortunate enough to be able to attend the game starting at 7:05pm. It was a special night (and Wyatt was feeling pretty good!). We not only attended the game but were escorted onto the field prior to the start, where we greeted and received autographs from Michael Stutes, a quiet young man who went on to pitch the final innings of the game. After our time spent on the field, looking around, snapping pictures and taking in the sites, we were escorted to "Doc's Box." Pitcher Roy Halladay's private suite where we spent the rest of the evening watching the Phillies overtake the Marlins (eventually) with several other families who we've come to befriend through a small support group at the hospital. This group, befittingly called "The Chronically Cool Families," was created by a family navigating the medical world with an idea and an inspired social worker who was part of their journey. It's a small group of families that gathers once a month to talk. At the meetings the parents casually chat as the children gather in an adjoined, but separate room with Miss L, the very favorite child life specialist, doing crafts and talking. It was really nice to spend the evening at the game together with these special families, each with their own story and individual journey. This was the first Major League Baseball game that our three attended...and a memory it did make! 

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