Thursday, March 26, 2009

If at Fist You Don't Succeed... Try, Try Again

Unfortunately, Brady's MRI was unsuccessful yesterday. The IV sedation did not manage to put him asleep enough and he woke up during the procedure—I guess he was too "stubborn" to give in to sleep. (I have no idea where he gets that "stubborn streak" from? ☺) Naturally when he woke up inside the machine he was terrified with all the noise, confined space, etc. (That which we hoped and prayed would NOT happen, happened. SIGH... Seems to be happening all too often lately.) We tried to settle him down and do it again, but to no avail. The minute we moved him, he knew what was up, and woke up and started crying.

So the upshot is that he'll have to go back next Thursday (4/2) and have the whole damn thing done again, and this time they will use general anesthesia. The good news is that he won't wake up during or remember the process; the bad news is the trauma we will face getting him in this time since he will likely know where he is going this time, etc., and be scared going in as he will probably remember what happened yesterday.

On a lighter note, the poor little guy looked like a drunken sailor walking around the house last night as he was coming off the medicine. At one point he pointed to the floor and said, "Stop moving!" We were concerned because we did not want him to hurt himself but you could not help but laugh at him, and frankly he was laughing at himself. (Frankly, we needed to laugh so it was good.)

I confess I was frankly pissed at not getting this done yesterday—I took an afternoon off work and will have to take another, but that's really the least of it. The worst part is that Brady went through all that trauma only to not get the results AND he has to go through the whole thing again! We end up feeling: "Can ONE thing in our life be uncomplicated?!" (You kind of wish we had just done general anesthesia to begin with but they like to try IV sedation if they the patient "qualifies", and apparently Brady did. Hooray for us! )

Not only that, but now we have to wait another week to get results of this MRI, and we have already been waiting over two months since we first found out about the "spot" on his brain. We hope and pray the "spot" is benign as the physicians believe, but we just want to know for sure at this point. At least once we finally get the test done we should know the results pretty quickly since our pediatrician and neurologist can access them about an hour after the MRI is done on the Hopkins website.

So keep us in your thoughts and prayers. You can imagine that we are on edge and frustrated at the delays. Pray that we hang in there and "keep perspective." You go down to Hopkins and see some children in far worse shape than ours. Some will never leave that hospital...

Of course we know something about that reality too, having lived it last spring with Hope. Given that context, it's hard for us not to be anxious as we return to Hopkins yet again and face another health concern with our children. Needless to say, every time we set foot in that hospital it brings back bad memories, and it seems like we've had to go there pretty often recently. And we have to go back again next week...

Oh well, what can you do... At the end of the day all you can do is TRUST God, "no matter how hard it may be"... but I can tell you that right now it's VERY hard for me. I feel like every time I trust I get burned... It's like I'm having to rebuild what it means to TRUST God from the ground up. TRUST certainly doesn't mean that everything I desire or pray for is going to happen; in fact, far from it. I probably always knew that intellectually, but now as we live through this season of personal hardship and suffering, I am experiencing it firsthand.

On the other hand, on a "deeper level" I know I do TRUST the promises of God. I'm convinced that this "deeper level" of TRUST is what has kept me going the past year or so as we have endured such difficult life circumstances. It has to sustain me until such time as the "surface level" of TRUST is rebuilt. Deep down, what other choice do I have right now but to TRUST? There's really nothing I can do about this situation on my own—it's out of my control. Even though it's totally frustrating to feel powerless to do anything, we just have to be patient and hope for the best and not give into fear of the worst.

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Wednesday, March 25, 2009

Brady's MRI Taking Place Today

Just a quick upate. They moved Brady's MRI to today (Wednesday) at 2 PM due to confusion over the type of anesthesia they are using—i.e., they only do IV-sedation on Wednesday so we had to change the appointment to today. The little guy has a hearing/speech evaluation this morning as well, so it is a busy day for him—and he can't eat anything besides jello and juice until after the MRI is over. We figured the exam this morning would take his attention off not eating for a while, so we kept both on the schedule. Plus, we get both things done today, which is somewhat convenient.

So please keep us in your thoughts and, if so-inclined, prayers today.

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Monday, March 23, 2009

Trust: No Matter How Hard It Might Be...

Hello Friends:

It's been quite a while since I posted to my blog but I wanted to send a note out to ask for special prayers this week for Brady and for his parents... 

Our son Brady has to have an MRI at Hopkins on Thursday.  A couple months back he had a febrile seizure (he has had several of episodes over the past two years) and when we took him down to Hopkins they did a CT-scan and found what they described as a "small cyst" on his brain—previous CT scans had not detected this.  We then took him to see a pediatric neurologist at Hopkins. The neurologist believes that whatever it is, it is benign based on all she can deduce from examining him, etc.—i.e., he seems like a normal 3-year old. However, the radiologist recommended that we do the MRI to confirm because he could not say conclusively that it was not a "mass"—i.e., solid as opposed to a watery "cyst".  They want to be sure of exactly what it is we are dealing with and the MRI is the best tool available to do that. 

As you can imagine this is challenging for us.  First of all, Brady will have to be sedated for the procedure, which is not fun for anyone, much less a 3-year old.  Second, when you hear something like this, it is quite scary as a parent...  If you have kids I'm sure you relate: "My child has a 'something' on his brain!?  That doesn't sound good..."  Your mind inevitably runs in a thousand different directions... and you conjure up all kinds of horrible scenarios that you pray aren't true.  You wonder if this is why he is having seizures?  Or why his growth and speech seem somewhat delayed?  And so on...

It is especially hard for us to not imagine the worst right now after all we went through with the girls last year.  We trusted doctors before... and they were flat-out wrong.  They kept saying, "Everything was fine," week after week, and of course everything was anything but fine.  For all of their great technology, they 'missed' something pretty big!  We trusted the doctors and it may well have cost Hope her life.  It reminds us that sometimes the so-called "experts" don't know everything... and that there is a "higher authority" in God.  

I believe in the power of that "higher authority" but honestly my problem right now (and I suspect Laurie might say something similar but I can't speak for her) is that I don't know how well I trust God's motives right now.  I trusted God with the health of our girls last spring and, though my brain knows it doesn't work this way, my heart feels hurt and disappointed with God for letting us down in a big way.  I prayed and prayed that things would go well and of course the prayers didn't get answered the way we wanted. I still struggle to comprehend what happened and why. (Knowing all the while that the "answers" I want may never come.) 

Ironically I frequently sing a song called Trust (by Phil Lazo) to myself and to my kids at night.  I did this long before Hope and Becca were born.  (We actually had Phil sing at our wedding and Brady's baptism.)  But now more than ever the words ring true for me.  Now more than ever, I need to remind myself of how I do need to trust God, "no matter how hard it might be".  When Laurie and I had to "choose between our child and our God" last spring, we had to trust that we were doing the right thing even though it was an agonizing choice to make.  We realized that this earthly life held little "hope" for our darling Hope and made the decision to release our daughter "into the arms of Jesus, the only savior that [we] know!"  (It is the hardest decision we ever had to make, and I hope and pray none of you have to make that kind of choice.)  In the weeks and months that have followed, I've had to try pick up the pieces of my shattered "hopes and dreams" for my daughter and learn to trust God  during these days when I feel like "I'm blind and can't see" God at all, or when it seems like my whole world has collapsed and "fear grips my days."  

It's hard to trust, especially after all I have lived through recently!  I feel so out of control at times and no matter how I try, I just don't like that feeling; it makes me very anxious at times.  I am a Meyers–Brigg "ISTJ" personality type who likes a neat, orderly, predictable existence and that is so not my life these days.  (Perhaps it never really was my life nor is it meant to be as a follower of Christ?  But somehow that doesn't bring me much comfort right now.)  I wonder if I'll ever be more comfortable living with all the ambiguity that is such a part of daily life on this third rock from the Sun?!

So perhaps now you understand why this procedure on Thursday is especially worrisome for us right now. When you've lived through what we've been through the past year or two,  you struggle to trust.  We tend to start from a position of fearing the worst rather than hoping for the best. I suspect it would be hard for any parents whose son had to have an MRI on their brain, but it is especially hard for us. 

Of course, at the end of the day, whether it be this MRI for my son or many other things we encounter in daily life, what other choice is there but to trust?  So many times in life, the outcome is just out of our control and the only thing left is our faith, hope, and ultimately our TRUST in God.  We certainly pray with all our being that Brady is okay and we would ask you all to join us in praying this week.  We need our friends to surround us right now and cover us with prayer. We thank you very much for your support.

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