Uncategorized

At the moment Cindy and I are sitting in Adam’s empty hospital room… It is just empty.. no life, no purpose..No Adam.  He brings so much into our lives.

A short time ago we had to let him go back into the hands of the surgeons, currently he is in the operating room. He has such courage..

Last night, after Cindy and I had our discussion with Dr. Lee; Dr. Lee made a visit to Adam and explain to him, on a one-on-one bases, what the decisions were, the risks involved and what the surgery would entail.  Adam was told about the different parts of his brain that were going to be removed and some of the risk’s involved.  Dr. Lee explained the risks of removing the hippocampus and the risks of removing part of the temporal and frontal lobes.  He explained about the SMA and possible stroke like symptoms he could experience.  This caused Adam some concern as his right arm is already experiencing numbness and weakness.. His right hand is not working properly.. he has little strength  in it.  This was all seasoned with a dose of possible stroke like symptoms.  Yet Adam has hope.. he has courage…he is so trusting.  He told Dr. Lee  “I trust you.”

Adam kept these concerns to himself because he knew that Cindy and I are very concerned.  Several times Adam would reach out and hold my hand telling me that it was all going to be ok.. never once expressing his anxiety of the surgery in the SMA area.  We only found out second hand from his favorite nurse, Lindsey

Now we are going to wait and pray… pray for Adam.. and pray for his doctors.

We asked Adam last night if he would give a recorded message for each and all of you. In his normal, humble way he did not think what he had to say was important, but he agreed to do so.  Please forgive me as the audio is a little difficult to hear, you might need to turn up the volume a little….Here is Adam’s message.

Cindy giving Adam a hug the night before the surgery.. just before lights out.

Cindy’s Hug

So many have been so kind,  we hang on every word you send us… Thank you for your love, thank you for your supporting words and for your prayers.  For those fasting… thank you for walking the extra mile with us this night.

Cindy and I met with Dr. Lee later this evening.. honestly I don’t know how he does it. He is not your normal doctor, the hours he puts in are long, his concern for his patient’s are extraordinary; we have not found this level of service else where.

We all have developed different talents and skills in which we work, in which we serve and in which we go about and use in our daily lives.  I wish to express a word of appreciation for these doctors who will be operating on Adam tomorrow.  They have taken years out of their lives to study, learn and practice medicine;  They now bring a lifetime of preparation into the operating room.  Without these skills we would not have the hope of helping our son.

Dr. Lee took about an hour with Cindy and I to explain the anatomy of Adam’s brain; where his seizures are originating and the placement of the grids inside his head.  He has four large computer screens that act as one.  He could easily slide a picture or file from one screen to the other without ever lifting his mouse off the table.  On these screens we viewed videos of Adam having seizures, of his EEG’s, of CAT and MRI scans, etc..

Adam is experiencing two different types of seizures or should I say the seizures are manifesting themselves in two different ways.  The one type of seizure is the monster we see: The shaking, seizing, wild  arm movements, and the contortions of facial muscles, etc.. These seizures have their beginning in Adam’s frontal lobe.

The other type of seizure Adam is experiencing often goes unnoticed.  He doesn’t make any wild body movements, he doesn’t produce the groaning, he doesn’t experience any of the body movements. During this seizure he is able to stand, walk and perform minimal tasks… but it does cause him to loose his speech and he can not find words to say, he becomes confused and sometimes irritable.  Others around him might not even know and most likely will not know that he just had a seizure. We watched a video of this type of seizure; Adam showed no outward signs, no eye movement, no twitching etc. The only outward clue was that he paused and stared into space and was unable to find his words to express himself.  Afterwords he was somewhat confused but able to function, albeit at a lower level.  I wonder how many times he had these types of seizures at school and no one knew… maybe other kids even tried to talk with him but he could talk back or at least not well so they might of thought he was being distant… but in reality he was just trying to survive the situation the best he could.

Dr. Lee explained several options, I outlined them in a previous post.  In the end we are going to go forward with the removal of both areas tomorrow, left temporal lobe and left frontal lobe. Adam will have a large portion of his Left Temporal Lobe resected along with his hippocampus. There is a strong possibility that he will have difficulties learning with the hippocampus removed.  The doctors are staying away from the language area in this portion of the brain

The other area to be resected is a portion of his left Frontal Lobe. The motor cortex and the SMA are located in this area, The doctors will not intrude into the motor cortex but they will need to cut into The SMA: The Supplementary Motor Area; This area deals with motor skills that are associated with planning.. i.e., playing the piano.. we are not sure what his outcome will be here, every patient is different;  1 out of 5 or 20% risk having stroke like symptoms when this area of the brain is breeched, these symptoms can last as little as a week or up to three months.

Now you might ask.. why?  Why because we have a hope of a better future for our son. A future where he is seizure free, a future where he can drive like other teenagers, a future where he can be independent and live his life, develop his talents and raise a family. Why, because we are optimistic for his recovery and his future. God has a plan for our little boy and we want to do all that we can for him then ask God to do the rest. We are willing to go the distance.

Are we Optimistic… You Bet.  Are the doctors optimistic… Yes.  Are there a lot of uncertainties.. Yes there are. Before leaving the private consultation room with Dr. Lee I explained to Dr. Lee that I believed in God and the powers of Heaven; I told him that I believed he could be guided as they operated on Adam and ask him for One Favor. That favor was is:  If he felt at anytime a prompting to do something different than what was planned or to not to do something would he please follow those promptings.  He said he would.

When the dawn breaks and the sun breeches the horizon tomorrow morning my uncertainties will rise with it; there are uncertainties for Adam and his future, but I am uplifted by your prayers, by your support and by your exercise of faith…you have given us hope and uplifted us in uncertain times…. Uplifting Uncertainties.

Faith in the Lord Jesus Christ, Hope in and through His Atonement and Charity, the pure love of Christ.

These are interesting doctrines and if adopted into our behavior become life changing, now and in the eternities.  Much could be said and written in this blog about these teachings, but this is not my intent.  I want to express the strength of each and the power they carry, but when taken together, when we apply them as a whole they become more powerful, they synergize in strength and carry greater force in their application… they are a Triad of Strength to help us personally and to help us, to help others.

We have exercised Faith, and will continue to do so;  We have Hope, yet we seek a greater measure; We strive to live Charitable lives, to become as Christ is;  to do as he would do… this is a mountain that might take a lifetime to climb… a little here and a little there… line upon line, precept upon precept, never giving up and always in the ascent…. Thank goodness for the gift of forgiveness.

Tomorrow Adam goes back under the surgeon’s knife… it scares me to death.  I find myself totally exposed; my insides are on the outside for the world to see.. the outer shell has been removed, no protective armor, only exposed feelings… I have no pride and only seek mercy for our boy.

If I could ask each of you (I am not accustom to asking) to please exercise Faith, Hope and Charity in Adam’s behalf tomorrow.  Exercise the power of prayer and fasting for his surgeons and doctors to be guided in their skills…. Pray that they will possess greater skills and knowledge than they now possess.  Exercise the power of Faith in Adam’s healing.

Tomorrow we are going to have a family fast for Adam… if you would like to join us we would be very grateful.

Those of you who have offered comments on this blog, we offer our heart-felt gratitude… Thank you.  We have read each of them to Adam, he very much enjoys hearing them.. he doesn’t think he is worthy of all your wonderful comments, he is a humble young man.  If any of you are so inclined please send him a note, it is one of our better moments to sit down with him and read you comments.

Faith, Hope and Charity, what wonderful teachings, what wonderful doctrines, what wonderful qualities to possess.  May we all seek them, may we all strive to exercise them in our daily lives.. Faith, Hope, Charity: A Triad of Strength for Humanity.

Father and Son

D-Day  was a termed used by the Allied Forces when launching an attack on the shores of German occupied France, June 6,1944.   “D-Day” and “H-Hour” are terms used for the day or hour to mark the beginning of an event.

For us D-Day has an entirely different meaning than that used by the military.  Although we are fighting a war, battle by battle, D-Day for Adam is a day of Decisions:  D-Day is Decision-Day.  That day will be July 24 2012… interesting enough it is also Pioneer Day and in many ways our little Adam is a Pioneer for all of us.  More on that in a little while… here is a little catching up.

This morning one of the ladies from the research team came by to see if Adam would be up for testing.  At the time he was resting and I politely requested that she come back later.  She was very understanding and just asked if she could leave some of her equipment in the room.. we said yes.  Adam was sleeping in a little this morning as he had a bad night.

Last night I was feeling very tired by 10:30 pm and started making the evening nest, a regular routine.  Adam had not been feeling well this evening as some of the day’s events wore him down; his head was hurting more than usual, he rated it as a 8 .. this is the highest score I have heard him give.  Whenever Adam needs pain medicine the nurse will ask him what level would he rate his pain;  They based it on a sliding scale of 1-10.  1 being the least and 10 being the max… so an 8 was pretty high for him.  Adam has always had a high pain tolerance, much more than myself.

As I went to bed  at a little after 11 pm, Adam was resting from the narcotics that he was given.  I had a little difficulty falling asleep; its hard to unwind and to get your body to switch over into the rest mode.  I always leave the curtain open to where I can see Adam lying in his bed.  As sleep approached I remembered looking over at him and wanting so much to take his pain away…  wanting so much just to hold him in my arms… wanting so much for him to be some place other than here.

My wants were only wishes, unfulfilled wishes that faded into the night as sleep overcame me.  He was resting now so he should be alright.

At 11:43pm I was yanked from my sleep by the horrid sounds of the monster groaning from Adam’s mouth, stealing his vocal cords to laugh at the world once more through our son’s body.  I was trying to push the fog of sleep from my mind and at the same time my legs were trying to get traction on the slick vinyl bed that the hospital provides for parents. Through unfocused eyes I could see his head beginning to twist and shake, his arms were beginning to bang against the arm rails.  I felt like a comic book character having an out-of-body experience; My clearing mind  was already over at Adam’s bedside, but my body wasn’t moving fast enough to get to him… I just couldn’t move fast enough… why couldn’t I move quicker… it all seemed like this was happening to someone else and I was just watching.

Adam was experiencing another seizure even though he was back on seizure medications. After getting next to him I sat at his bedside totally helpless, totally exposed to my raw emotions.. I reached out, but there was nothing I could do, “Oh Father Please help him” was my private plead.  I called to Adam, pleading in a soft voice to come back… please come back son.

The seizure lasted approximately two and a half minutes, but the monster wasn’t gone, he continued to haunt Adam’s mind.  I had not seen this before, but after what looked like the end of the seizure Adam moved around rapidly and in somewhat of a panic, looking for something, but what was he looking for?   He was reaching all over his bed feeling for something as if something had been lost. I tried to ask him what he needed or what he was looking for, but there was no answer, only panic in his eyes and in his actions.  Finally after exhaustion set in he calmed down, the nurse gave him some medicine and he rolled over on his right side and slipped away.  The next morning I spoke with him about this episode :  he had no memory of any of it.

It is a thundering feeling coming out of a deep sleep into a hazed and confused world.  Your mind comes alive first, trying to make some sense of the situation; immediately your heart goes from a 45 beats per minute resting state to over 120 beats per minute in a matter of seconds. Adrenaline kicks in and you start to react.. it’s fight or flight… and your here to fight.

Tomorrow will be our D-Day, a day of important decisions concerning the course of action we will be taking with Adam’s next surgery.  Dr. Lee’s team will conduct more mapping on Adam’s brain to determine the exact location of the tubers and what brain functions they are effecting.  We will not be allowed into the room during testing as some of these test might induce seizures; once the doctors start sending electrical signals to his brain via the electrodes anything can happen.  I think this is a safety precaution the doctors take for their own wellbeing;  A parent who see’s someone inflicting pain or inducing seizures upon their child can react before thinking.

We will be deciding if the doctors will remove one or two areas of Adam’s brain. After tomorrow’s mapping we will know how close these tumors are to vital areas and what functions they control.

It is a position I would never want another parent to be in; It is a decision I would never want another parent to have to make for their child. It would be so much easier if it were me and not him. It will be a decision all of us will have to live with the rest of our lives.

Here is another way to look at it; Suppose the authorities came to you and stated that in order for your child to live he needs to have an arm cut off, you can use an ax or a saw… the choice is yours… what will it be?

I feel like Abraham and Isaac of old;  I am placing Adam on the altar to be sacrificed or at least part of him will be sacrificed. I keep looking and waiting to find a ram in the thicket.  D-Day is almost here and I don’t know if I am ready for it.

Tomorrow is D-Day and Wednesday the battle cometh (surgery).  Every battlefield has it casualties; my heart is a casualty, it  has been badly wounded, I just hope it doesn’t die in the next battle.

Adam you hold so much of my heart, you are my son, my only son… please don’t go away… Love Dad

There are times in life when we ask ourselves, especially during difficult moments, why do we have to pass this way?  All of us have been here and have asked that question, none of us are exempt; There might have been a time when you lost your job, had a family member sick or even worse lost someone dear to you. Unfortunately or fortunately all of us will most likely be there again and have to experience the experience.

Traveling the unimproved roads in life are rarely a willful choice; there are very few road maps and even fewer sign posts to point the way back to the interstate. Once off the asphalt, traveling these roads are fraught with personal, family and spiritual dangers; if not careful the potholes, the roads’ soft shoulder and steep cliffs can cause severe damage or death to you physically and or spiritually.  Instead of acting to influence the situation for our betterment we allow ourselves, at times, to be acted upon and the situation influences us.

Focusing on the road and road conditions can cause us to be myopic in our views;  This shortsightedness could lead to a wrong turn, down a more unwanted path with larger potholes, softer shoulders and steeper cliffs.  Instead, we need to keep focused on the destination, even though the visibility is low.  I love the analogy of Lehi’s Dream and the Rod of Iron; if we could just keep the destination in mind and our hands on the rod we will eventually leave the mist, come through the fog and enter into better visibility and more pleasant days.  There will be times that we will not know the destination of the journey we have been placed on; these are the times we need to exercise faith in the Lord Jesus Christ, as all things are in His hands.  Life is not fair, but in the end the Lord will make all things right;  The balance sheets will all balanced out and all things will be as they should be.  This I believe, This I know because Christ is what He said He is; He is The Son of the Most High God, He is The King of Kings, He is Kind and Loving, His Bowels are full of Mercy and His Grace sufficient.

If we allow the situation to act upon us and complain of the path that we’re on, we might very well miss the teaching moment the Master is trying to share with us.  These temporal moments we are experiencing are short lived;  they will pass and they will seem to us as a dream when compared against the backdrop of the eternities.

Adam has never complained of the road given him to travel; his path is very unimproved. He knows his path is different;  he has said: “Mom, I know I am different, but it’s ok… it doesn’t bother me.”  He is wise for his age, mature for his allotted time and ever willing to accept the potholes, soft shoulder and even the cliffs. I know God has a place reserved for him.

Above I mentioned that it might be fortunate that we have unimproved roads to travel on.. that might seem counter intuitive. It’s not, through our difficulties, disappointments, and despair, whatever they may be, we are being taught the lessons that will last, the lessons that will count in the eternity;  They come from Him who descended below all things… as it was once asked….”Art thou greater than He?”

May your journey be insightful, remember to act and not be acted upon.

As more of a record than a point of interest I asked for a copy of the medications that Adam is using or that the nurses have used on Adam while we were at the hospital…. WOW.. It is a laundry list that only a chemist or doctor would understand.

Banzel

Kepra

Active Continuous Infusions:

D5 1/2NS with 20mEq KCI/L 1,000mL IV, 120 mL/hr

D5 1/2NS with 20mEq KCI/L 1,000mL IV, 110 mL/hr

Bacitracin-polymyxin B Topical

FAZolin (Ancef injection) 2,000 mg, 20 mL, IV,

Dexamethasone (Decadron 1 mg/mL NS PEDIATRIC syringe) 1mg, IV q6hr

Famotidine (Pepcid injection) 20 mg, 10mL, IV q12hr

Ocular lubricante

Phenytoin (phenytoin oral capusel 100mg) 200 mg, PO, BID

Polyethlene glycol 2250 (MiraLax) 17 gm, 1 Packet, NG, BID

Povidone iodine

Promethazine (promethazine 1mg.mL NS NP Syr) 25 mg, 25 mL, IV, q6h

Acetamionphen-codeine (Tylenol with Codine #3) 2 tab, PO, q6hr, PRN

Bisacodyl (Dulcolax) 10 mg, 1supp, PR, qAM, PRN

DIAZepam (Valium injection) 5mg, 1mL, IV, Once, PRN

DiphenhydrAMINE (Benadryl injection) 50mg, 1mL, q6h, PRN

HYDROmorphone (Dilaudid injection) 1mg, imL, IV, q3hr, PRN

Ibuprofen 600 mg, PO< q6hr, PRN

Lidocaine-prilocain topical (Emla 2.5% topical cream) 1 app, Topical As Directed, PRN

LORazepam (Ativan injection) 4mg, 1mL, IV As Directed, PRN

Ondansetron (Zofran) 8mg, 4mL, IV, q6hr, PRN

Phenytoin (Dilantin 5mg/mL NS Pediatric injection) 1,500 mg, 300mL, As Directed

I came across an interesting fact… did you know where the Rx symbol originated from?

Medical Prescription – The origin of the Rx abbreviation, that doctors use all over the world, and in all languages, originated from the eye symbol of Heru (Horus).

I have found myself using the term “The Grid” when referring to the pad and electrodes that were placed on the surface of Adam’s brain. The correct term, or at least one of the correct terms is “intracranial electrodes.”

Here is a brief explanation:

“Sometimes the root cause of epileptic seizures is difficult to find. When routine EEG’susing electrodes on the scalp surface cannot locate where a patient’s seizures are originating, neurosurgeons may need to do more invasive monitoring. Intracranial electrode placement is a surgical technique that puts electrodes directly on the surface of the brain, allowing for very precise and effective EEG monitoring.

“Intracranial EEG monitoring is used to precisely map epileptic areas of the brain. Neurosurgeons can place these electrodes, referred to as intracranial strip electrodes, grid electrodes or depth electrodes.

“Not only does this technique allow for very precise mapping of areas causing the onset of seizures, but it also helps physicians identify and map critical areas of the brain, such as those controlling speech and motor control, that will need to be avoided during surgery. 

“By identifying which areas of brain need to be removed and those that need to be preserved, neurosurgeons are able to improve seizure outcomes.”

Here are three pictures showing the pad and electrodes, and the placement on the brain.

Grid Placement

inplant devices.. “The Grid”

It is the weekend and we have quickly learned that some of the daily essentials are not around.. mostly doctors.  Well, I understand that,  they need the weekend too.. what we sometimes forget is that we don’t own them…they do have a life away from their patients. Nonetheless we were on the proverbial pins and needles yesterday waiting for Dr. Lee to show up so we could find out if Adam’s seizures had given them enough data to go forward… we DID NOT want to go through the gauntlet again.

Time dragged on, minutes turned into hours and the hours loafed by with no sighting of Dr. Lee and no word on the seizure data.  We pretty much had given up, it was 8:00pm and we consigned ourselves to wait until Monday in order to find out any news for Adam.  As you might guess…miracles never cease… and who should suddenly appear at our room…you got it.. Dr. Lee.

Always calm and never in a hurry, Dr. Lee carefully spent time with us as we all stood at the foot of Adam’s bed. He very kindly explained that there are two areas of concern; The most recent seizures showed the focal area being located in Adam’s Left Frontal lobe.. higher up and back on his head.  In addition, there are also concerns from two of the other seizures, one seizure the first day and the other that happened on Friday, both point to the Left Temporal Lobe.. essentially two hotspots acting on their own.

He proposed three courses of action… no decisions need to be made at this time… we will talk more about it with him on Monday.

 First Option:  They remove (resect) both areas at the next surgery which is scheduled for this coming Wednesday.

Second Option: They only remove the Frontal Lobe area and wait and see what happens with the Temporal Lobe Area.

Third Option: They remove the Frontal Lobe and leave the remaining grids over his Left Temporal Lobe and continue monitoring, then if needed they can go back in and resect this area.

Benefits vs Risks:

First Option: Benefit: We get it done and Adam can begin the road to recovery. Risk: But if they remove too much brain tissue, Adam has an unneeded deficit of brain tissue and he has to live with the consequences the rest of his life.

Second Option:  Benefit: Less aggressive, less tissue removal, less after effects. Risk:  If we only remove the Frontal Lobe and the Temporal Lobe continues to induce seizures; Adam would have to go back in the hospital and repeat most of what we have done… Having two more surgeries.

Third Option: Benefit: We get a chance to take a look and see what the effects are of only one area being resected.  This one makes sense to me, but the risk of infection dramatically increases the longer we wait.  I don’t understand what this entails but I am pretty sure we don’t want to mess with an infection in the brain.

22 July 2012:  Throughout the night (last night) Adam has been experiencing a good amount of pain in his head; this has continued into the morning. He is on narcotics to keep the pain at bay.

I was sitting by his bedside this morning, trying to talk with him; Adam very much enjoys the one-on-one conversations. I had hopes of helping him with his discomfort.. he hurts, he is sweating and uncomfortable.  He couldn’t talk much, but he gently reached over and took my right hand with his left and held it.  I stopped talking and just sat there looking at him, he seemed to find a little peace.  He fell asleep holding my hand. I bowed my head with tears in my eyes and offered a prayer for him.

Oh Adam I love you… hang in there.

Rest My Son.. We Love You

Sunrise in Orlando

Orlando really is a beautiful place; as I sat here this morning I could see the soft glow of the sun rising in the eastern sky, truly a gift from above.

Today is Sunday, it is the beginning of a new week.. it is the beginning of a new day and it is a new beginning for our family.  We are going to take each new day as a blessing, each new day will provide an opportunity to make things better, each new day will be a day to learn and grow, each new day will provide an opportunity to serve others.

Life is full of gifts if we will just stop for a moment and take note. I can not begin to express the wave of gratitude I felt yesterday as I headed for the community shower at 5:30 in the morning. The feelings I felt were of pure gratitude;  grateful to be here with Adam… an overwhelming relief of knowing that all I have to worry about is taking care of him.  There are so many other things going on that need attention, especially the hospital care.  I am blessed to work for a wonderful company that is providing the medical coverage that is watching over Adam. I am able to focus on Adam and they focus on everything else..

Not everyone on this floor can say this; if I were to go from room-to-room I would garner a variety of stories and situations.  Each parent or guardian is with their child and going though much of what we are going through, yet they might be worrying about all the other factors that are involved in being in a hospital. My heart, my feelings, my emotions want to reach out.. they do reach out that their burdens might be made light, that their child will recover and all will be taken care of.

“Children are an heritage of the Lord” (Psalm 127:3) How grateful I am to the Lord that he has allowed Cindy and I to be stewards over three of his children.. Adam, Shelby and Loren.

We often introduce our family as “this is my wife and these are my children.” I hope to be faithful enough that I might be able to say this through out the eternities.

Find the beauty in each new day, each new journey and each new beginning.

Ernest Hemingway wrote the words “courage is grace under pressure.”  How else can I describe yesterdays events. I saw Adam experiencing great personal pressure, yet he faced them with courage; the courage of Job.  I had previously written how we had received word and direction from Dr. Lee that Adam needed to have three more seizures in order for them to get the data they needed prior to operating.  Our hearts and spirits sunk with that news, yet we knew what had to be done.

I went off in a corner and offered a silent prayer, asking for more of the unwanted, in the form of multiple seizures to come upon our little boy. All prayers are heard and answered according to the will of the Lord; sometimes it takes years for a particular prayer to be answered. Yesterday the Lord was merciful towards our timeline.  From that point on Adam had five seizures, they started off mild and unassuming but finished with the power and terror of a Category 5 Hurricane.

We were  with the missionaries, at Adam’s bedside, carrying on a conversation. Adam was participating in the exchange when he looked over his right shoulder and told me in a quiet voice to push the button (he did not want to alarm the others), while at the same time making the motion with his hand of pushing a button… He felt a seizure coming on.  I knew what he was telling me so I immediately pushed the button which sends a signal to those who are monitoring him.  This was a huge blessing as Adam was able to tell me that a seizure was surfacing, normally we get no warning.

Adam has to be monitored in four ways 24 hours a day, 7 days a week while in the hospital. The monitoring consists of a camera, a microphone, The wires in his head,  (electronic brain wave monitoring, EEG)  and an individual in the room watching him.

The camera is very important in that it captures all of his body and facial movement during a seizure. The physical manifestation of a seizure gives clues to the doctors on which side of the brain is causing a seizure. An example would be if the seizure is originating on the left side of the brain, the individual having the seizure might turn his head to the right, raise his right arm, look to the right with his eyes, etc.  The left side of the brain controls the right side of the body.

Vocals are recorded to evaluate the speech functions of the individual during a seizure. Brain wave monitoring is correlated with the video and audio information. All this information is put together to produce an evaluation of a possible focal area in the brain or determining a hotspot on the brain that is the beginning point of a seizure.

The first two seizures Adam experienced in the afternoon were mild and he recovered quickly, however the second seizure was a little stronger than the first; they became progressively worse as the night wore on.  Adam experienced two more seizures while we had visitors that evening.  Cindy had to ask them to step outside as they began to surface.  It can be very embarrassing to be the victim of a seizure to be observed while having one and it can be difficult for the bystanders to understand what is happening.

Again Adam recovered, but not as well as before… the seizures were taking a toll on him.  His body temperature was climbing, sweat began to bead up on his skin, even though the room temperature was set at 68 degrees.  His head was experiencing extreme pain; We asked for pain medication.  The nurse when to get it; He had nausea so we asked for this medicine, again the nurse was helpful . He was in pain, and had such a difficult time telling us what he needed or what he was feeling.

When an individual goes into convulsions the body seizes, the muscles become tense, the conscious mind looses control over the body it resides in.  After having a large seizure it has been described as running a marathon, fighting a prized fight and spending a week with the Marines in boot camp, all happening in a matter of a few minutes… your body is exhausted, your muscles burn from the lactic acid that was just produced, your mind is confused as you try to grasp the world around you… nothing is making sense and you hurt.

Adam cried out that it needed to stop…meaning the seizures, they needed to stop:  the nurse was trying to get the doctor on the phone for permission to use the medicine to sedate the seizures. Adam was sweating much more by now and wanted to sit up, to allow him to cool off a little. The wires in his head caught the back of the bed and jerked him back a few inches.. he didn’t scream out, didn’t say a bad word.. only a facial expression of pain and stated “please be careful.”  He asked and wanted to know if he had met the requirements for the doctors, meaning did he meet the needed number of seizures… we didn’t know.

Adam kept his game face on, it was only Cindy and I in the room now, he laid back down on the bed as the pull on the wires hurt and he needed to rest.. just then I began to see his right eye begin to twitch and his lips to quiver.. The demon was rising from the depths of Hades and taking full reign of our boy. This time there was no mercy, his body went into full convulsions, arms, legs, neck, face, etc. Cindy quickly pushed the button again; Adam was shaking uncontrollably and there was nothing we could do.. to see your child in such pain and in such a situation and yet not be able to come to their rescue is a parents worst nightmare. We could not even hold him in our arms and tell him it would be ok because the camera had to record his body movements. Instead we sat on each side of his bed and watched.. watched in pain and horror as he shook, strained and cried out in unaudioable groanings to help him. Finally I said to him ” Adam it will be ok.. Adam come back, come back.. we’re here… Adam we’re here, come back.”  His tongue was now severely chewed up, his body exhausted, his mind fighting to find reality… as it passed, after the demon had his joy ride… Adam cried out.. “enough, enough” only we could understand him.

Cindy, took the role of mother bear and demanded that he have the medicine. The nurse complied.

Adam pushed his personal limits this night in hopes that he might have a better morning… a morning that will last the rest of his life. Courage.. What is courage?  Have you seen courage, real courage?  I have, I saw it in a courageous young man, fighting against the odds, that he might be as others are.. that he might live in a world without limitations, that he might not be judged for something he has no control over. Adam showed great courage, while exhibiting personal grace in the face of the storm.

Courage can be described as grace under pressure.  I have seen all three in one young man; Pressure, Courage and Grace. The pressure of a life changing disorder: The Courage to face it head on, yet handing it with the grace of a saint.

Adam you have so much to offer that too few see.  Thank you my son.

Adam getting a bandage change

Courage is Grace Under Pressure