A Nice Day

I haven't had a chance to post since yesterday. Joss and Kaybri came up last night and I've just been too busy enjoying my family. Joss and I took Kaybri to the zoo today while Joss' family was here visiting with Brody. It was nice to get away for a bit. I've noticed that, on the days Brody is surrounded with family, he is much more content. There is definitely something to be said for that! This evening, the Attending Physician informed us that Brody's kidneys are starting to trend towards failure again. At this point, we'll just try a few medications and hope that helps. Other than that, its been a fairly nice day for him and therefore, a fairly nice day for us. :)

Thanks Grandpa "Joe"

Brody

The storms of life seem to visit us all,
and it don't really matter who we are.
Some storms are light, and just flurry on by,
and some shake us clear to the core.

Some storms come in so hard and fast,
we don’t know it until they’ve gone by.
And some come in kind of slow, then they stay,
and all we can do is ask why.

And why do some folks have more storms than others?
It aint right and just don’t seem fair.
Cause Brody, who’s my Schubby buddy,
has certainly had more than his share.

Now I know God’s a watchin’, lookin’ over us all,
but sometimes it just don’t seem right.
A little boy like Brody, barely four years old,
just the thought of it makes my jaw tight.

Well I guess Brody must be special in God’s eyes,
cause the storms of life are meant to make us tough.
And the storms that he and his family have seen,
Well they’re almost more than enough, yet…

With each new storm that seems to enter his life,
Brody just keeps beating the odds.
I guess he hasn’t fulfilled his full purpose in life,
he’s not ready to return to the Gods.

So we’ll hold our angel just as long as we can,
and we’ll love him every single day.
And we’ll fight the storms right there beside him,
just as long as he’s willing to stay.

Greg Harwood

Brody has been sleeping like a rock all morning. It seems he is either Storming like crazy or sleeping like crazy. Still working to find that happy medium. No news on his elbow yet. I don't think the PICU team has really had time to address it yet today. His potassium levels are usually high due to his kidney failure, but its low today. They are working on that right now to get him level before we see serious complications associated with low potassium, primarily heart and muscular problems. Other than that, its been a really uneventful day so far. Just the way I like it.

As I previously mentioned, Brody can hardly bend his left elbow. They did an ultrasound to look for blood clots associated with the PICC line he had last week. No clots. So now they wonder if its not the bone. They will likely xray it tomorrow. As for his VEPTR, they were able to squeeze him onto Monday's schedule. It should only take an hour and is a relatively minor procedure in comparison to when he had the VEPTR hardware placed last fall. Throughout the day, Brody has just been sleeping a lot. He's a little over medicated. We're working to find a good balance so that we can manage the Storms without knocking him clear out. Oddly enough, I'm starting to think Brody has been Storming all along, just on a much milder scale. Ever since he was born. We always likened them to "autistic tendencies" but I am now beginning to think they were Storms. Sudden and unexplainable spells of agitation. I don't know. Maybe I'm just overthinking it.

Better Spirits

After my last post, I returned to Brody's side to find him awake and quite alert. He looked up at me with those big blue eyes and gave me a very faint grin. My heart melted. The happiness was short-lived and the Thalamic Storms soon returned. But in that moment, I felt so much peace.
Today, I met with the orthopedic surgeon about whether or not we would proceed with the rib expansion procedure next week. They said that as long as he is stable and the PICU doctors think he is up for it, they see no reason no to go forward. In fact, rather than doing the VEPTR surgery Thursday, they are going to TRY to move it up to Monday just so we don't have to go home just to turn around and come back. Also, upon further exams by Rehab and Physical Therapy, they have noticed Brody's left arm will not bend well. It doesn't appear to be anything related to the bone but rather a possible side effect to the PICC line (a type of IV that is placed in the arm and is threaded up the vein to the heart) They may do an ultrasound today to see what problems, if any, there may be. As always, I will update the blog with any updates.