Epilepsy

JANUARY 2009
Tuesday, January 27, 2009 at 9:57am | Grant Garner

Quick update: Lois is doing much better. This was all brought on by our attempt to switch epilepsy medications, to one with less long-term side effects. That proved unsuccessful as the new med is obviously not working. Thursday was the full physical seizure day, with Friday being internal brain seizures. Saturday was in and out of brain seizures and Sunday and Monday have been seizure-free. Everything is looking like we should be able to go home today, and then it is just rest and recover.Thanks everyone for your thoughts and prayers.

Friday, January 30, 2009, 12:53:52 PM | Grant Garner

Recap of Lois’ condition and last week events

My apologies for not communicating well about Lois’ situation. Last Thursday Lois had some major seizures after I had left that morning to head to Nashville. She wasn’t responding to any communication (phone, email, f-book) so I had the doorman go up to check on her. He found her having a seizure, so I had him call 911 and they took her to the ER. I came back home on Friday morning and then we were in the hospital until this past Tuesday.

On Friday, after hooking Lois up to an EEG (a process they use to monitor brain activity) the realization came that she was in Status Epilepticus (http://emedicine.medscape.com/article/793708-overview), which simply put is being the state of a continual seizure. This can be convulsive or non-convulsive, which the later was true of Lois. As you can read at the website listed above, this is very serious situation. Needless to say the folks at the hospital kicked it into high-gear at that point.

After administering the correct medication, PRAISE THE LORD, the seizures subsided sometime on Saturday. Then Sunday, Monday and Tuesday were seizure-free under observation at the hospital. After determining that she was stable enough, they released us to go home on Tuesday evening. Being home has been great but still up and down for Lois in the recovery process.

Wednesday she was experiencing some short-term memory loss. Thursday all of that cleared up but then she couldn’t sleep at all that night. We are headed out to Rush this afternoon (Friday) for a follow up EEG appointment. We are hoping the issues the last couple of days are simply the side effects of the massive amount of medication and extreme brain activity of the past week. Thanks for your thoughts and prayers.

Here is a recap of some postings/notes from facebook with more info: 1. Quick update: Lois is doing much better. This was all brought on by our attempt to switch epilepsy medications, to one with less long-term side effects. That proved unsuccessful as the new med is obviously not working. Thursday was the full physical seizure day, with Friday being internal brain seizures. Saturday was in and out of brain seizures and Sunday and Monday have been seizure-free. Everything is looking like we should be able to go home today, and then it is just rest and recover. 2. And quick update for everyone, we were able to come home last night around 8pm. Now we continue to rest and recover. She has been pretty groggy today. Bit of a hangover, I imagine, from the drugs along with the insanely extreme brain activity. Probably will be a few days but Lois is on the mend. We have a follow up appointment with our primary neurologist tomorrow afternoon to confirm that all is headed in the right direction. Thanks again for all the thoughts and prayers!

JUNE 2009

Thursday, June 4, 10:36pm | Grant Garner

First forgive me if this is the first you have heard about Lois and her current condition, also forgive me if this is duplicate notification. I went through my contacts to alert family and friends. Feel free to pass this along to anyone who may want to know.

As you may or may not know, Lois has epilepsy which evidences in seizures. Historically this has been few and far between. Back in January she had multiple seizures when I was on the road. It was a serious episode which caused a 5 day hospital stay. Please pray for Lois. She had seizures yesterday for first time since the Jan incident, went into Status Epilepticus (constant state of seizure – non-convulsive) again and would not come out on traditional medicine this time. Had to induce a coma early this AM. Good news was this stopped the status, but at the time we were not sure how long the coma will be needed and there are possible complications on re-entry to consciousness.

Lois is doing better today but still in it. As I said, we had to induce a coma this morning (5am MDT) to get her seizures to stop (subtle status). This did the trick but due to the coma state they had to insert a breathing tube. This did all of her breathing for her until this afternoon. Around Noon they discontinued the coma drugs to allow her to begin the process of coming back.  This has been an all day process.

About 5pm MDT she began to respond to us by squeezing our hands. About 8pm she opened her eyes momentarily and became quite animated, or perturbed due to the breathing tube that is in place, again for support only as she is breathing on her own. They are hoping to remove the tube tomorrow morning and until then will continue with slight sedation. Her seizures have not restarted currently so we are praising the Lord for that. Continue to pray for His grace and mercy as we continue the process of coming back.

By the way, some of you may not know, Lois and I moved from Chicago back to our hometown in Eastern Colorado, for a time, in order to focus on some other projects in hopes of not touring full-time. This decision is primarily to not be away from my wife for extended periods. I hope all is well with you. We are currently in Presbyterian/St. Luke’s Medical Center in Denver, CO in the Intensive Care Unit (http://www.pslmc.com/). We covet your thoughts and prayers and will try to keep this list updated on her situation. God is in control. Grant

Saturday, June 06, 2009, 12:38:50 AM | Grant Garner

First forgive me if this is the first you are hearing about Lois. Here are the two updates I have sent out since this started on Wednesday (June 3rd), newest on top: Friday, June 5, 11:10pm MDT: Today has been a good day. The breathing tube was removed this morning, approx 10am. Once this was done, the last of the sedation drugs were discontinued. This began the process of letting those drugs clear the system. An hour after the tube was removed and there was no sign of seizures, the EEG was removed.

For the remainder of the day, there have been times of activity, mainly due to Lois being agitated by something, and times of rest and sleep. She has been responsive but we are still waiting for her to clear the sedation drugs from her system and become more coherent. Currently she is sleeping restfully. In addition to continuation of the normal medication to control seizures, tomorrow morning will see another session with the EEG to confirm that Lois is still “seizure-free”.

Thank you for your continued thoughts and prayers as we have had a very positive day. Also thank all of you who have emailed and called. I have been trying to respond to each individually and will continue. Moving forward, we are hopeful that there will be no serious effects from this episode and that Lois will be back to normal soon. Thanks again and I will continue to keep you updated.

g2

Sunday, June 07, 2009, 12:17:07 AM | Grant Garner

Update on Lois (Saturday, June 6 10:55pm MDT): First, I want to thank you all for your thoughts and prayers as well as your great notes of love and encouragement. They definitely mean a great deal to us. As you may have guessed, due the time of my updates, I have taken the night shift, in addition to some of the day shift. Lois’ mom and dad have been filling the gap in the afternoon and early evening.

Early this morning, blood work came back that did show the main sedation drug was clearing her system. Be it very slow but positive movement. This drug is known to hang around awhile so not a big surprise. All throughout the day Lois has been improving. Around Noon a follow-up EEG was administered and the results showed no seizure activity. Praise the Lord. All in all, a very positive day as we have even been able to have decent conversation with her periodically. She even has been cracking some jokes which has been very encouraging. Of course, they are more humorous with her slurred speech and muted facial expressions.

Continue to pray as she continues to improve. She still has trouble using her hands as independent finger manipulation/coordination is still lagging behind. Everything looks like we should be able to move out of the ICU tomorrow to a regular hospital bed. Another big step anticipated tomorrow is the ability to take pills orally. This will be an important part of the process as it will indicate being able to recover outside a hospital environment. Hope this finds everyone doing well and we will continue to keep you updated.

Love, Grant and Lois

Monday, June 08, 2009, 12:01:57 AM | Grant Garner

Update on Lois (Sunday, June 7, 10:28pm MDT): Today is a day of continued good news mixed with some slightly-off news. We will start with the “slightly-off” news. As mentioned yesterday the sedation drug that takes its time clearing actually slowed down verses increasing. Compared to yesterday’s point drop of 2, this morning showed a 0.9 point drop. The doctors attribute this to the drug interacting with both of the remaining drugs being administered for seizure control. The seizure drug that is the issue, has also not been effective for Lois in the past so the process of titrating down on that began today, which should positively affected the clearing of the sedation drug.

That being said, for the good news, Lois had remarkable improvement today in all categories. It was enough for the doctors to agree she was able to take pills and no longer needed to stay in the ICU. Praise the Lord! So, this afternoon we transferred out of the ICU and into a normal hospital bed (room 524). The doctors are now thinking we should be able to depart the hospital in days vs. longer, hopefully by Tuesday.

Again the love we have felt from everyone has been tremendous. It is hard to find new ways to express our immense gratitude, so I guess I will let you think of the best way to say that and multiply it by 1000! Ways to continue to pray are that the sedation drug would increase in clearing and that there would be no side effects from being in Status. Typically there are two main issues that result from a bout with Status. One, some sort of long-term side effect and two, being more likely to re-enter the condition in the future. We love you all!

grant and lois

Tuesday, June 09, 2009, 2:56:03 AM | Grant Garner

Update on Lois (Monday, June 8, [being sent on Tuesday, June 9, 1:43am MDT]): Another banner day for Lois and for feeling the affect of your thoughts and prayers! First the decrease in the main sedation drug was greater today, from a 2 point drop, to a 0.9 point drop, to today’s drop of 2.7! We still have a ways to go but this is very encouraging.

Basically it proves that the second anti-seizure medication, that has historically been ineffective for Lois, was part of the problem. Today saw the discontinuation of that drug leaving only the seizure medication that has been effective for Lois for years. A question that comes up in response to the statement of the existing drug’s effectiveness is, “Why did Lois have her seizures if the drug she was faithfully taking is quote effective?” The answer to this is not simple as we look at what factors were present in our experience that could reduce her seizure threshold.

Over the recent past there are many things that could have contributed. First, we have been in an intense transition for the last few months. First losing both our jobs, then realizing the need to move, making that move and then preparing our new residence (painting, moving furniture, etc…), all carry a significant stress and fatigue level. Stress and fatigue are huge factors. That, in addition to fighting a slight cold and adjusting to the increase in altitude and decrease in humidity, all stacked up to bring about this seizure event. It is positive that there are known factors identified as abnormal that can be remedied.

Today also saw the removal of the catheter and the approval of a normal diet, which means that Lois could and did get in and out of bed multiple times today and began to introduce semi-solid food back into her system. As you may notice, tonight’s update was delayed significantly compared to previous versions. This is where I specifically felt all of your thoughts and prayers in a very real way. It is a long story that I won’t get into, in great detail, but the short version is, the neurologist that is overseeing Lois’ case, wrote orders to adjust both seizure meds today that ended up being very unclear. He discontinued the ineffective drug, which was a great thing. At the same time, he wrote an order that communicated a dramatic reduction of the good seizure drug. This would have been a huge mistake which could have triggered another round of seizures, and possible coma, in Lois.

When the time came for the medication, and the nurse told me the new amount, I immediately questioned the accuracy. The nurse showed me what it said in the computer and even took me to see the hand written order from the neurologist. It clearly looked like he ordered the reduction. I explained to our nurse, to the head nurse and eventually to the on-site doctor why this was inaccurate and potentially dangerous for Lois. The problem was none of them could do anything about it as neurology was not their field. So beginning at 10pm, 2 hours after the meds should have been taken, they paged the neurologist to call and clarify. After multiple pages and another two plus hours, the neurologist finally called and denied the reduction, confirming my position.

The specific way I felt all of you, was during this “negotiation” with the hospital staff. Obviously much has happened over the past 5 days and I haven’t gotten much sleep because I obviously can’t leave Lois’ side as nobody here knows her condition like I do. As I was trying to get those on-site to understand the issue I could feel myself on the verge of losing control. Immediately, I began to cry out to the Lord to show up in a very real way to keep me under control and help me to make the case convincingly. Then taking a deep breath I laid out the reasoning that could not be argued with in a very calm manner. This motivated the on-site head nurse to page the neurologist consistently for 2 hours, finally producing the only solution, a call of clarification of the drug order. Praise our Lord and Savior Jesus Christ for strength in a true “hour of need”.

Moving forward, after avoiding the costly mistake tonight, there is no reason that Lois should not continue to improve and we should be able to depart the hospital, hopefully tomorrow or Wednesday. Please pray for continued strength for us and that God would completely heal Lois from this specific episode but more specifically from this condition entirely. Also pray that we will be able to establish an epileptologist here in Denver in a timely fashion (navigating medical system red tape, i.e. referrals, waiting periods, etc…) Also pray for His continued provision in the days ahead. Grace and Peace to You.

Grant and Lois

Monday June 9: Today found the continued decrease of the sedation drug, from 19.4 to 16.2, the best daily decrease we have had at 3.2. We also saw the last “tube” removed, her main line IV. She was also able to get up periodically from the bed, which consisted of the 10 feet to the bathroom. Solid food was also on the bill today for all three meals. A big point of praise and appreciation came today as the two general practice MD’s that have been heading up our case at the hospital, championed our cause with both their own hospital system and a new hospital here in Denver that specializes in epilepsy.

As you know from earlier email updates, the neurology dept. at the current hospital were in way over their head as far as our situation, so it has been apparent from the beginning that we needed to find a better home for treatment. In Denver there are two different hospitals that have Epilepsy Centers that carry the highest rating from a third party, objective agency. Our MD’s took on the medical system in order to get all of our records and recommendations needed to get an appointment with either of these Centers. As you could probably guess, setting up an appointment with a specialist is not a quick process, but living 2 hours from Denver and taking into account the recent seizure activity, we needed to establish with a specialist in short order. Though it was a big undertaking, they successfully sent over all the info necessary to begin the appointment process. Now we have to wait and see which Epilepsy Center can work us into their schedule.

As the day progressed, Lois was able to actually take a shower and sit up in a chair. Then at 2:45pm the confirmation came that we were going to be able to depart the hospital! Praise the Lord. After last minute paperwork issues, which included determining the need to stay in Denver for a few days for follow up appointments, and final checks by the MD’s we departed at 4:45pm. After briefly stopping at Jamba Juice, we arrived at my grandmother’s, had dinner and went to bed by 9:30pm. We were looking forward to our first uninterrupted sleep since this all began.

Wednesday, June 10, 2009, 5:04:23 PM | Grant Garner

Update on Lois (Tuesday, June 10 2:15pm): First forgive me for not sending out an update yesterday, but believe me, it was for great reason. That being, we were discharged from the hospital and went to stay with my grandmother here in Denver. The reason for the missed update is grandma is holding out and does not have internet access! Ha. Following is the update for yesterday and today, written like they came out on the day in focus:

Tuesday, June 10: Sleep was great, and other than getting up a few times for the bathroom, it was fairly uninterrupted! Even was able to sleep until 9:00am. Got up and grandma had breakfast ready, which Lois put a hurting on. After breakfast, I jumped back into the fray to follow up on whether one of the hospitals would be able to work us into their Epilepsy Centers before the end of the week. After talking with the scheduling department at University of Colorado Hospital, the realization of the great help we received from the MD’s at PSL became even clearer. UCH’s office received additional info saying they would call back in a bit with confirmation as they were possibly overbooking to get us in! Again Praise the Lord.

Just after lunch, the call came and we have an appointment at UCH Epilepsy Center on Friday morning! Next is a blood draw tomorrow to confirm drug levels and then the appointment on Friday. After that I anticipate heading back out to Flagler to continue the recovery process. Thank you all again for your amazing love and support during this time of great need. Continual prayer needs would be specific healing of Lois’ throat as the breathing tube left great irritation that causes periodic coughing fits, along with continued recovery from the seizures and clearing of the discontinued medication. God is good to us. “We” love you.

grant and lois

Wednesday, June 17 9:45pm | Grant Garner

All, it is hard to believe that a week has gone by since my last update. That is good and bad I suppose. Good because Lois and I have been back in Flagler recovering and continuing the process of settling into our new home, busy with basic life (it is amazing how the simple things can be so paramount). Bad because I am realizing that I haven’t shared the “ending” of this brief, but oh so important, chapter of our life. Let me go back and pick up where we left off.

Thursday, June 11: The big event for today was going back to PSL Hospital to have blood drawn for drug levels. You would have thought this would be a fairly simple process but apparently nothing is simple at PSL. We actually had to go through Admissions upon arrival, re-answer a bunch of questions, and even get a new identification wrist band before heading to the lab. Of course once there it took all of five minutes, but the process to get there took almost an hour. It was a bit surreal going back to the hospital but very nice to leave for good this time.

When we got the results back, the sedation drug had dropped almost 4 points to 12.5. Man that sucker sticks around! As far as the epileptic-control drugs, the ineffective one had cleared completely and the effective one was at the right level. All, very good news. After departing the hospital, we were actually able to  buy some “essentials” at Target, then return to my grandparents for, what we hoped to be our last night in Denver before heading home.

Friday, June 12: Today was a great day all around. It began at 8:30am when we met with our new epileptologist, Dr. O’Brien, at the University of Colorado Hospital (UCH). This meeting proved to be very helpful and informative and lasted almost 2 hours! Pretty amazing knowing they “overbooked” to get us in. We didn’t feel rushed or that they were “doing us a favor” at any point. This partnership, of sorts, already is the best we have had and I am sure it will continue to be. After this appointment, the next steps are going to be much less exciting, which is GREAT! Those being: getting another drug level in about a week and once everything has settled down, coming back into the UCH Epilepsy Center for an extended monitoring session, even up to two days. This will potentially give great insight into Lois’ condition.

After the morning appointment, we headed back to Flagler to continue the recovery process. When we arrived, I finally got to put our bed together so we could actually sleep in it for the first time in almost a month. That felt great.

Saturday, June 13 through Wednesday, June 17: Being home has been great and each day brings with it a new appreciation for the little things in life. I feel amazingly blessed to be able to sit and have cereal with my wife in the morning and simply BE together all day long. Of course there are also struggles associated with the recovery from such an ordeal but God is faithful to meet us there and give us the strength to continue through. Each day has seen great strides and we are excited to see that continue. For example, Lois’ throat is mostly healed with no more coughing.

We have been overwhelmed by the outpouring of love and support throughout this entire ordeal, from all the words of encouragement and prayer via email and phone, to the personal visits and the cards and flowers in the hospital, to the home-cooked meals that have gotten us through this week. WE LOVE EACH AND EVERY ONE OF YOU and could not have made it without you. Of course we would be missing something without giving a huge shout of praise to our Lord and Savior Jesus Christ for showing up in very real and tangible ways all throughout this process (more to come on that later).

Thanks again and we will keep you posted on any new developments in the days ahead.

We Love You!
grant and lois

NOVEMBER 2009

Tuesday, November 3, 2009 | Grant Garner

Well it has been awhile since the last seizure updates, about five months, which I wish were longer.  Before I get into the update, I should bring you up to speed on what Lois and I have been up to.  After moving to Colorado back in June, I was asked if I would fill in as a substitute tour manager for a band this fall.  The current tour manager and his wife were going to be having their first baby and he wanted to be home for an extended time after the birth.  Since I was good friends with this band and had worked for them in the past in was a natural fit.  I agreed to take six weeks of the tour starting the first of October.  During this time Lois and I decided that she would head to Chicago for some modeling work and to see friends.  This also worked out as my time with the tour would end when it made its way to Chicago.  Then both of us would spend some time catching up with friends before heading back to Colorado.  This brings us to the present, which finds me on tour in Kennewick, WA.

This morning, as we were setting up for the show, I received a call from a Chicago phone number that I did not recognize.  I answered it to find it was a representative at a hospital in Chicago, stating they had admitted Lois for seizures.  Apparently Lois had been found in a grassy area alongside a street in the neighborhood where she was staying.  Of course you can imagine all the thoughts that raced through my head, from how did she get there to what had she injured during the seizure to here we go again with a hospital that has no knowledge of her condition.  Setting aside my emotions, I immediately kicked in to an unfortunately familiar mode and began to attempt to manage the situation from across the country.  After determining the correct steps were being taken to keep Lois from going into Status, I reached out to the people she was staying with along with our church family at Missio Dei.  Once again, they all proved to be angels on mission and jumped to action, even to the point of eventually staying overnight in the hospital with Lois.  Once the situation seemed to be under control, I was faced with a difficult decision,  to leave the tour immediately to get to my wife.  It may seem like a no-brainer, and at the end of the day there was no decision, but there is always a desire not to let anyone down in the midst of personal trials.  After calling the tour manager who was on sabbatical, we both made the decision that I would fly out and he would return early, to the tour, the following morning.

Wednesday, November 4, 2009 | Grant Garner

It is difficult to realize when yesterday started and today began.  Last night was spent talking with multiple doctors, then friends on-site at the hospital, then doctors again, all while trying to get some sleep.  I can say that I had no problem getting to the airport on time.  I believe I was the first person to arrive this morning, maybe even including those working.  After making a connecting flight, I arrived Chicago Ohare just before Noon, headed immediately to the hospital.  There I confirmed that Lois was not in danger of going into Status and was basically already recovered from the episode.  Praise Jesus.  Even better the hospital stated that Lois was free to go.  So we gathered her items and headed out.  Later this afternoon, we decided we would stay in Chicago to recover rather than jump on a plane and head straight home.  We depart for Colorado on November 17.

Friday, November 20, 2009 | Grant Garner

After spending time recooping and catching up with friends in Chicago, we flew to Colorado on Tuesday, Nov 17.  As we were landing in Denver, Lois began to act strange causing me to think something was wrong.  She began having partial seizure episodes, which mainly consist of spaciness and not answering obvious questions properly.  Fortunately we were in the descent.  I alerted the flight attendant who was able to call and have EMTs standing by upon landing.  They had us deplane first and the EMTs did a preliminary assessment.  Of course I was expecting Lois to move to full convulsive seizures any minute so I was stressing the need to move toward the hospital.  After explaining to them her history of Status they saw the wisdom of leaving for the hospital as soon as possible.  Fortunately, our hospital is the closest to Denver International Airport so there was no destination debate.

As they already had Lois on a stretcher, we simply went across to the gate opposite of the one we arrived.  Next to it was a door and elevator that took us to their ambulance down on the tarmac.  We loaded up and drove accoss the labyrinth of runways to depart through a special access gate.  On the way to the Emergency Department, I paged our epileptologist and she had them ready to receive us at the hospital.  Within 30 minutes from the time we arrived, there was an EEG hooked up, reading Lois’ brain activity and transmitting info via network to the Epilepsy Department.  Needless to say, I was overjoyed by the response and care we received, especially in light of the experience we had in June at another Denver hospital.

Although Lois was not coming out of the Partial Seizure state, the hospital staff continued to make all the right moves.  Unlike all of our other seizure experiences, Lois went straight from the Partial state to Status, bypassing the Convulsive state.  Instead of recommending throwing Lois into a comma, the Epileptology Staff recommended administering a smaller dose of the medication utilized last time to induce the coma to see if that would break Status.  Praise the Lord, they were able to get the seizure activity to stop without a coma.  We were then transferred upstairs to the Epilepsy Monitoring Unit.  We had been planning on spending a few days in the Unit after the first of the year in order to get more information about Lois’ brain activity.  As we were already at the hospital, it made sense to do the monitoring during this visit.  After spending a few days in the Unit the doctors came to the conclusion that Lois was having “pre-seizure” activity while she sleeps.  They recommended introducing an additional medication to Lois regime, called Zonegran.