Heart Rate

Andrea recently read somewhere that parents of children who are autistic have the stress level of a combat soldier.  While Reuben is not autistic, there is something about the constant vigilance and surveillance of Reuben 24/7 that definitely has an impact on me and Andrea.  We often comment as we head to bed that we are entering the battle and not leaving it!

For a while I have been wanting to write a post, but have always found something else to be doing.  However, for the evening I am at the computer as Reuben is sleeping on the chair a few feet away. 

It started last night when Reuben had a seizure a little before we went up for bed.  Then he had 3 more in the early morning hours today.  Surprisingly, he woke up fine and was fine at church.  Then this afternoon he was playing his marble game in the basement (where I was varnishing trim) when he decided to go settle down on the "rest chair" and fell asleep. 

Reuben helping me varnish yesterday.

We generally try to keep him from napping these days to reduce the likelihood of seizures, but on days after he has had a lot of seizure activity, we will let him nap because we know how exhausted he can get.  He slept for about one hour and then got hit by a pretty hard tonic-clonic seizure. 

I carried him upstairs afterwards and he had a hard time settling in on the couch, but did eventually and then had multiple seizures upon waking up.  That was at 5:20 according to Leah who got me the time.  The tonic-clonic seizure ended and he started breathing again, but he just kept looking around and was not responsive to our attempts to talk with him.  He would periodically ask for "help" or say "done" but that was about it.  By now it is 15 to 20 minutes later and Andrea and I are both watching him and trying to figure out what is going on.  Is he still seizing or not?  Is this non-convulsive status epilepticus or is it just a longer and more difficult recovery period than normal?  Close to 6:00 we move into the dining room and I try to snuggle him on the chair.  He wants to get "down", but he is so wobbly he would immediately fall.  Then he has a few short tonic-clonic seizures in close proximity which is the cue to Andrea and me that he is still in some altered seizure state and that it is time to give him his "rescue" medication. 

We ask the kids to leave the dining room to give Reuben some privacy as we administer the rectal gel valium.  In the middle of this, he has another short tonic-clonic seizure.  Within 10 minutes, the valium has taken full effect and Reuben is "out" and will be for the next 2 to 3 hours.  During that period of time, he needs to be under direct supervision to monitor his breathing to make sure the valium does not slow him down too much and he stops breathing.  As such, I thought I would take a some time to write while I keep an eye and ear on him.

Now to the content related to the post title.  Heart Rate. 

There are really three things that get my heart rate going.  1.  When any of my children stop breathing (thankfully Reuben is the only one who has done this so far).  2.  When I smell fire.  3.  When there is water dripping in the house.

One:

If you have been reading this blog since we started the construction project, you know that all three of these have happened in the last couple years.  Reuben stops breathing multiple times a week when he has tonic clonic seizures.  Usually this lasts less than 15 or 20 seconds.  As odd as it sounds, those seizures don't really get my heart rate going.  They are "normal" around here.  However, when the clock keeps ticking and he is still totally locked rigid in seizure with eyes wide open and dilated and his breathing stopped, but his heart pounding away and his face and lips starting to change colors, that gets my heart going too.  I am thankful for the "rescue" medication that we have, but it was the time before this time that we used it that I recall very specifically thinking that if he has another seizure after you have given him the valium, there isn't any more you can give him.  This was a very humbling reminder to me that our "rescue" medication only works if God wants it to work.  There is no guarantee.  In that light, I often go to bed recalling Psalm 127.  "Unless the Lord watches over the city (Reuben), the watchman (Dad) stays awake in vain."

Psalm 127 is one that is very connected to Reuben for me.  It was 2008 after three of the most difficult years of my life when God got a hold of me and his Word came alive to me.  I read this Psalm one night and looked over at Andrea and asked her "why are we trying to keep God from blessing us?"  If God is real and his Word is true, it says that "children are a blessing from the Lord".  Less than 2 weeks later, Reuben was conceived.  Very fitting that is is that very same Psalm that I often return to.

Two:

We have had fire.  See this post.

Three:

Water dripping.  As many of you may recall, when we first started building the addition, we had lots of water issues.  However, they weren't technically inside as the line between inside and out was rather blurry.  A couple of months ago, we did have water dripping inside the house.  We were talking with a friend in our living room when Andrea calmly mentioned that there was water dripping out of the light switch cover plate and running down the wall.  The heart rated kicked up a few notches and the the brain starting running through all the options of where it could be coming from.  Fortunately, the area where the water was coming from was below the main mechanical soffit, so by removing one of the plywood panels over the adjacent mechanical chase and using a flashlight and a mirror I was able to locate the drip.  It was coming off the waste line from my Mom's toilet where I had apparently not gotten my PVC connection perfectly welded.  I so much preferred that option to it being rain water getting in somewhere.  A little repair work and the leak is taken care of and now all I have left to do is patch the sheetrock on the ceiling that I had to remove to get access to the pipe.

  The other benefit of this whole situation was that I had to take the toilet up and then set it again.  While I was looking for a new wax ring, I found a wax-less ring that I got instead because one of the issues you can have with in-floor radiant heat is that the heat can melt the wax ring.  Now that just won't be an issue!

It has now been 3 hours since we gave Reuben his medication and he is still "out" in the chair.  Actually he just woke up and asked for his "Baba" (Brian - his physical therapist - his standard request upon waking).  Apparently all is right again in Reuben's world.  We will see what the rest of the night brings.