A Greater Thirst

Anger. Frustration. Pain. Exhaustion. Desperation. Helplessness.

These are feelings no one wants to experience on a regular basis. I am a "peace lover" by nature, so the anger is especially hard for me to swallow. Over the past few weeks these feelings have each been taking their turns in my life on a consistent basis. Preston is having nocturnal seizures again and though it seems he is the one who would suffer the most from this mentally, in reality he is unaware of the events, leaving me as the one who is finding it hard to cope. There is incredible peace that comes when your child has found rest from a trial and over the years Rees and I have felt that for Preston many times. However, along with the peaceful times come those heart wrenching moments when one of us awakens to the return of his nocturnal seizures and as the fog of our sleep lifts it hits us like a punch to the gut that... they're back. "God, nooooo," I pray. "Make it stop. Just let him sleep. Make this a bad dream." But for whatever reason that only God understands, it is real. And it is back. Now. Again.

I called his neurologist's office on Monday morning and spoke with her nurse. She said she would talk to Dr. ElZind and get back with me in a few hours. The day passed and by closing time when I had not received a response, I called them back. As you can imagine, when your child is going through this, the thought of even one more night of it is unacceptable and you want help immediately. The receptionist assured me that the nurse would be calling me back soon. Closing time for the office came however, and I did not get a response. I tried my best to be patient on Tuesday, waiting until 2:30 to call again and I was assured that I would receive a return call from the nurse by 4:00. When 4:15 rolled around and I had still not received help I called back. Finally I was connected to Dr. ElZind's nurse and she explained that the her discussion with Dr. ElZind had resulted in the determination that Preston was at the maximum amount of his current medication for his weight and she would need to add another medication to try and resolve the situation. He would need to follow up with blood work in two weeks to check his levels and she would follow up with a visit in three weeks. Wednesday evening, 30 minutes until closing time, I was informed that the pharmacy had still not received the order for Preston's new medication and with the neurologist's office closed for the day I faced the reality that we would go through yet another night without help.

Why are people incompetent? Do they not sense the urgency here? What if this was their child? Would they be as careless? Aren't the doctors and nurses supposed to help us? What do you do when you can't get help from the only people you know who are capable of helping? God, why do You not excerpt your power in this situation and prod those who can help me along?

Today is Thursday. Preston's seizures seem to be getting worse by the night and last night he was literally hurting himself. I sat by his bed helpless as he scratched his face, dug at his eyes with his fists and banged his arms on the headboard and wall in a fit I could not wake him from and my anger and frustration grew. I know that God chooses not to heal or give rest sometimes, and with that I can trust Him because His Son suffered for us. I know that He has felt the pain of not being able to rescue His own Son from the death that had to occur for mankind. For me. He knows my pain. He knows far deeper pain. And His reasoning and purposes I will never challenge. But it still hurts. It is still hard.

This morning, as I returned home from taking my other kids to school I called again and demanded to speak directly with the nurse's supervisor. She assured me as she stood next to Dr. ElZind's nurse that the medicine had indeed been prescribed but had never been called into the pharmacy. She apologized over and over and assured me that as we spoke it was being sent electronically and should be ready for pick up as soon as the pharmacy could fill it. As I backed my car into the garage Laura Story's song "Blessings" came on the radio and I burst into tears. God's presence was with me in a tangible way as I just sobbed for what felt like an eternity. The anger, frustration, despair and helplessness just all poured out as I listened to the words I have heard so many times.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

*'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
*

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home
*

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

"Blessings" by Laura Story

What IF a thousand sleepless nights are what it takes to know He is near? I can praise Him in knowing that the aching of this life is indeed "the revealing of a greater thirst this world can't satisfy."

Riley Children's Hospital

Preston had two appointments today - one with a Pediatric Neurologist and one with a Pediatric Gastroenterologist. His pediatrician, who referred us to Riley Children's Hospital, wants to rule out any stomach issues being the cause of his vomiting. My mom instinct knows that he does not have stomach issues, but I am learning that a big part of the brain game can be guessing (no pun intended) and process of elimination. It's really unfortunate that it has to be that way. It seems to me that if I (or my insurance) is paying a doctor with a minimum of 8 years in college and a salary of six figures to know what it wrong with my son's brain, they had ought to be able to do more than tell me, "We can't really be positive of what's going on here but since the seizure medicines are working for now let's just go with it."

Unfortunately, this neurologist had much of the same to say. She feels his nausea and vomiting could be seizures, but that it also could be what is called cyclical vomiting. The problem I have with that diagnosis is that cyclical vomiting is predictable because, just like it's name, it comes in a cycle like clock work. For example a person with the diagnosis knows that every six weeks to the day they will wake up vomiting and it will last until they are dehydrated. Preston's nausea spells are completely random. It is my experience, though, that neurologists don't listen. Or they listen but they don't hear. Often they come in the room with their opinion already formed having read the charts and they have a sometimes very direct way of making you feel like you are an over-concerned mother. I am a very non-confrontational person and have respect for those who are more educated than I, however I am learning that to be your child's advocate you have to speak up and insist that people (including doctors) listen. This is not easy for me.

The neurologist we saw today wants to try a new medication for Preston, Depakote. She said it is a medication used to treat both seizures and cyclical vomiting. Her hope is that it will not only work for the seizures, but make it possible to take Preston off of his other two seizure medications so that he would only be on one. I have more investigating to do before I will fill the prescription because even though the expected results sound nice, the medication has side effects that make me nervous. Not to mention the fact that she said, "when you get over to the gastroenterologist she will tell you that Depakote is one of two medicines they use for cyclical vomiting." At our next appointment, when I told the GI doctor what the Neurologist said she replied, "No, we do not use Depakote for that." Furthermore, she mentioned several medications they use and the other medication that the neurologist said we could try was not one of them either! Ugh! Do you see what I'm dealing with here? And this is Riley! Supposedly the best pediatric hospital in the area!

I really like the GI doctor. I felt like she listened to me and asked a lot of questions. She agreed with me after looking at Preston's lab work and examining him that he did not have cyclical vomiting or other GI problems. She understands, though, that in order to get any further with the neurologists we have to play their game so to speak and eliminate it as an option through complete testing. So she is calling for a few tests to be run. And unlike the insurance games most doctors like to play, she is fine with us doing the testing at our local hospital and just having the results sent to her.

So that is our next step. More testing. Bless Preston's heart. I'm so glad he is so good about all of this. As long as it's not blood work. He said to the neurologist today, "If you people keep taking blood from me I'm going to turn into a piece of fabric. I'll be a human bear rug. Just skin." He always makes me laugh. Unfortunately there is more blood-work in the forecast if we start the Depakote so that his liver enzymes can be monitored for safety.

Please continue to pray that Preston keeps his good natured attitude as we go through this testing. He said tonight that he is "tired of vomiting and tired of having his blood ripped out of him." Pray that we continue to move towards a better diagnosis. The progress seems so slow but I know God's timing is perfect so I will trust Him. And finally I would ask for prayer that I know how to be a firm advocate for Preston but do so gracefully. Because once this process of elimination with stomach issues is over I am done playing their games and I am going to be militant about getting answers! I'm 'bout to get all Coach Hines up in here people! :)






 I know - I needed the laugh though. I would never. Or would I? Ah hem.... Let's just keep praying :)