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 :)

"Even if the Healing Doesn't Come"

I want to thank all of you who prayed for Preston last week and kept us in your thoughts. We spent most of the week at Payton Mannings Children's Hospital where Preston underwent a 72 hour EEG to determine what part of his brain his seizures were coming from and if we could gain better treatment from better understanding.

We became aware of his epilepsy when he was 8 years old. At that point, although no one wants to hear news that their child is anything less than perfect, we were relieved to have an answer to his random waves of sickness. I remember countless days of begging the school nurse to let him stay at school after he had vomited. "He's not sick," I would say, knowing full well that he had no fever and would come home feeling fine for the rest of the day. To make a long story short, it was a teacher in the lunch room who recognized Preston's unresponsive staring as an "absence seizure" and we were able to pursue a diagnosis and treatment from there. Up until that point we never knew any type
of seizure existed other than the "grand mal" seizures that most are familiar with.

In the last two years or so, Preston has also begun to have night seizures. These are more typical looking seizures and cause unrest for him, and often Rees or I, as we try to monitor him to make sure he doesn't hurt himself. We also try to keep track of how often he is having these to report to his neurologist.

During Christmas Break Preston began to have seizures off and on all day long. At first we thought he was getting the flu, but as the day progressed and we observed his actions and other signs we realized what was happening. Preston was in almost a constant epileptic state that entire evening and throughout the night. I am ever grateful to my parents who took over caring for him that night as Rees and I had a commitment we could not get out of. The next day Preston felt better and we thought we were in the clear. But while we awaited a return call from his neurologist Preston would begin another two full days of misery, vomiting, and uncontrollable bowels. We made trips to the emergency room on two different nights. The first time we were sent home after they determined (without an EEG) that he just had the flu. Even though Preston had no fever and had experienced good days between the bad days there was little I could do to convince them that these were his typical seizure-like behaviours and he needed help. Of course he was better the next day.

It wasn't until two nights later, after the fits returned that we made our second trip to the er. Again, we were talked to like I was an overprotective parent and Preston just had a "G.I. track bug". The doctors in the er that night received a "code" and had to rush off for almost an hour to assist in an emergency. We were basically told by a nurse that we would be sent home with nausea medication as soon as the doctor returned. The nurse seemed to understand our desperation and suggested that I catch one of his "episodes" on my iPhone to show the doctor the next time we came in. Thank the Lord for his suggestion because shortly after that nurse left the room Preston had a seizure and I was able to catch it on video! The er doctor finally began to take us seriously! Preston was administered medication by iv to stop the seizures immediately and he was asleep in less than five minutes. 'Praise God' was all I could think! Preston was so exhausted from the days of seizing that neither the doctor nor I could waken him to leave the hospital. I was one thankful mother to see my 13-year-old son sleeping so hard! Having to dress him and put him in the car via a wheelchair was well worth the help we finally received that night and Rees and I were relieved.

The relief was short lived, however, as Preston began the seizures again two days later. His neurologist increased his meds and we were finally able to stop the day time seizures but the night ones continued. She then scheduled him for the testing in Indianapolis. Again, I thank all of you who were praying for Preston during that time. The team of nurses there were very determined to make him comfortable, but 72 hours is a long time for anyone, especially a child on the autism spectrum who is obsessed with maps and knowing every square inch of the building he is in. One of the nurses was finally able to obtain a map of the hospital on our third day there and Preston quickly located our room, which way was North, and where our car was parked. :) He was a little more comfortable then.

I have to be honest, though we were treated extremely well there was quite a bit of frustration in our time there. Preston had no seizures the first two days and rested well during those nights. It wasn't until I suggested on the third day that we skip his medicine that night that we finally caught one of his seizures on the video and EEG monitor. We continued to hold his medicine the following day until 1:00pm, when we had to bring his levels back up in order to release him a few hours later. He never did have a day time seizure during the testing. Of course I did not want him to suffer one of these episodes, but at the same time, the doctors cannot study results if they do not have them.

I was standing next to the neurologist when she viewed Preston's episode from that last night. This was interesting to me because even though I am understandably curious about what is going on in his brain, I have never been allowed to be present during an EEG reading. This is something the neurologists usually do days after the test when parents or patients are not present.

"That is definitely a classic seizure," she said, "but there is no seizure activity being picked up on the surface of the brain." She went on to explain that this meant his seizures were coming from too deep within his brain to register. Furthermore, "nocturnal deep frontal lobe seizures" are very hard to treat because they respond very poorly to medication. So since the increase in medication had stopped the daytime seizures we would just continue with his current treatment and have to accept that as long as the nocturnal seizures weren't increasing in frequency or velocity we would continue his current treatment.

It is hard to accept that there is no treatment for something that is ailing your child. It is hard to hear that even the doctors don't have the answers. I did do further research on deep frontal lobe seizures when I arrived home and found further evidence from various studies that what the neurologist had told me was accurate. However, and this is why the Internet can be good and bad both, I also found more information than I bargained for. "Medications such as anti-epileptic drugs can typically control the onset of seizures, however, if medications are ineffective the patient may undergo surgery to have focal areas of the frontal lobe removed." (Panayiotopoulos C (2005). "Symptomatic and Probably Symptomatic Focal Epilepsies: Topographical Symptomatology and Classification". The Epilepsies. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=epi&part=ch12.)

Preston has a follow-up appointment with his neurologist at Memorial Children's Hospital on the 21st and we would appreciate continued prayer as we discuss with her what our next steps will be. There are certainly other medications haven't tried yet and there is definitely the hope that his seizures will not get worse in which case we may just continue on our current course. I'm just not sure if I can accept that though? We're supposed to be ok with the fact that he's just going to keep having the nocturnal seizures? That's difficult. I was comforted by a favorite Kutless song recently and thankfully, the words have lingered in my head.

Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are
Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn't come
Lord we know your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are
You're still the Great and Mighty One
We trust You always
You're working all things for our good
We'll sing your praise
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come

We have no idea what the future holds for Preston. We know that things could be much worse and we are grateful they are not. Especially as we pray for our friends, the Bells, whose daughter Lauren is undergoing brain surgery Friday morning to detach the entire right side of her brain. Her seizures are so severe that they are spreading and literally destroying her little by little. Christ makes no mistakes, and like the Bells, we will trust in Him and His plan for Preston and Lauren. We can only pray for strength; the kind we need as parents to face what each new day brings even if it's disappointment, and the kind Preston needs to keep on the path God has given him to travel. He knows we'll be there with him. Just as we all know Christ will be there with us. The God of our mountaintop is also the God of our valley and we have no doubt that He is beside us.

I was reminded in a devotional that the apostle Paul requested three times to be healed of his "thorn in the flesh." But God responded, "My grace is sufficient for you, for my power is made perfect in weakness" (2 Cor. 12:9) Yes, God chooses not to heal sometimes. And when he does, we must rest in the fact that because of His grace we can endure suffering just as Jesus endured the Cross. That same grace is extended to us! Hebrews 12:2 says we are to "look unto Jesus, the author and perfecter of our faith, who for the joy that was set before him endured the cross,...". Our pain and suffering will pass and some day we will all stand with Christ and experience true healing and joy! Lauren and Preston and ALL those who have suffered will reach what has been set before them - wholeness in their Creator! It was by Him and for Him we were made! Praise His holy name!

You are God and we will bless You
Even if the healing doesn't come