Tuesday, September 30, 2008

Memorial Service for Drew

We will be celebrating Drew's life on Friday, October 3rd, at 10:30 a.m. at Park Memorial Chapel, 5008 Elbow Drive S.W. Everyone is invited to join us for his memorial service and reception (all ages are welcome).  There will be a private burial to follow.  

Any donations made in memory of Drew can be sent to Alberta Children's Hospital - specific details to follow (there is a fund for mitochondrial disease research - we will include information as we obtain it).

If you would like to contact us our contact information is as follows:
Jordan and Kari Clark
2415 - 27th Avenue NW
Calgary, AB  T2M 2K1
(403) 286-9270

Thanks again to everyone for your support!  

Sunday, September 28, 2008

Our sunbeam flows gently back to its Source

It is with both sadness and joy that we write to tell you all that Drew has returned to his Maker.  What a journey it has been over the last 4.5 months.  We have dearly valued every day with our little wonder and though we were so sad to watch him go we were also relieved in a way to see him peaceful and know he was no longer enduring his battle.  We kissed his fuzzy little head, held his hands and drenched him in tears at 12:18 p.m. today as he took his last breaths.  His daddy and I were there holding him tight as he drifted peacefully away, surrounded by our love.  The doctors said Drew was not aware of his surroundings but I will always think he was aware of us loving him, and that he was escorted by the hand to Heaven today.  We mourn but are peaceful at the same time - how odd one can feel in the midst of this.  

We have experienced more than we thought possible in the last few weeks.  From the time of our last post we were told Drew had actually stabilized and could perhaps be around for a few more months.  It seemed he had reached a plateau and was doing alright - a relative term.  He was asleep most of the time and when he was awake he didn't seem to look at us, but through us.  His senses were going, and his autonomic nervous system began to fail more quickly.  He seemed to enjoy a few long baths and his music therapy, and to relax with snuggles, but he was definitely not the same Drew as even the one we brought in to the hospital two and a half weeks ago.  He no longer seemed to have much sense of touch and little we did by mid-week elicited a response.  I think Jordan and I knew he was on a mission to depart sooner than later, in spite of what the doctors were estimating early last week.  It went so quickly and by Thursday he was in a coma.  He had stopped seizing which was a blessing in a way - he looked so relaxed.  
Friday was difficult - we were again presented with some difficult decisions about his future.  Did we want to cut back his nutrition and just let him start to go slowly?  His brain was very ill, but his body still seemed to be functioning well.  Did we want to continue to support his body?  They thought he would be comfortable as he was apparently completely unaware of anything we were doing to him, but we were having a hard time with the idea of not feeding him.  It seemed we would be taking the role of God in deciding when he should go in a way.  We thought through every angle we could and still didn't feel comfortable with it.  We prayed about it that day and prayed that God would either make the decision apparent or decide it for us.  Little did we know how quickly God would respond.  He is faithful.  
We spent every hour possible with Drew over the last week, even sleeping beside him all night long ("sleeping" said loosely - I don't think hardly a sigh or a visit from a nurse went unnoticed!).  Last night we took him out for Chinese... we put him in his kidcart and escorted by his oxygen tank and his feeding pump we went down to the cafeteria for Chinese takeout with our whole family.  We made a pretty good parade, all we needed was candy to throw!  What a special experience.  The nurses got a real kick out of it too - Drew has made so many special friends.  
Jordan got some special cuddles last night and I was awake with him alot of the night, trying to keep his little feet and hands warm.  I knew better, but that was the only thing I could do for him, besides snuggling in close.  By morning we knew something was different and called the family in.  We were blessed to have them nearby when Drew returned to God.  I held him for 3 hours this morning, as close as I possibly could and loving every second.  What a gift.  He will warm my heart forever.
Thank you to everyone who has prayed so diligently for Drew and our family through this time - please continue to support us as we transition to this next stage.  We have gently closed one chapter but until we have more answers about what Drew's disease was we will not yet be able to close the book.  We yearn for your prayers that God will be in our midst powerfully, that He will comfort and guide our family - immediate and extended, that we will be able to get some answers on what his disease was and that as difficult as it is that it will be one that affects Drew only.  That is so hard to say, but my heart aches to think of it affecting anyone else.  If this experience has taught me anything it is that we must be so much stronger than we think we are!  It's amazing how much strength we found through a simple little kiss on Drew's fuzzy little head!
As we left the hospital this afternoon without Drew it had to be the hardest part yet.  The last kiss I left with him was both heartwarming and enlightening.  It was not our Drew that we kissed, yet with the last kisses, it felt we could leave his body there and continue on without his flesh, but with his spirit.  He is in a better place and we are aware of a sense of peace about his departure.
As you read this, we hope and pray that none of you will feel discouraged by Drew's passing.  We want his life to bring encouragement about God's faithfulness to those that knew Drew.  It would mean so much more to us to know that Drew's life made a positive difference.  He has certainly changed our lives.  Through everything that he was faced with he still smiled.  He learned to play through his seizing movements, to laugh when he got a reprieve, to love in spite of being wronged (too many pokes!), and to smile through it all.  He warmed everything in his path and turned our faces towards God.  If only I could do so with the same spirit and innocence!  What I wouldn't give to have my dear little Drew healthy and here... oh what I wouldn't give.  My heart will ache, but better to have known him and loved him than to have never known him.

Thank you for all your encouraging comments, we are sorry we don't get to respond to them all.  We will continue checking and trying to post updates.  Thank you even more for your  continued support!  We love you all!

Wednesday, September 17, 2008

Can we roll back time and hold it there?

Daddy's favorite picture of Drew
One of Mommy's favorite pictures of Drew
There just is no easy way to say what we are having to say...  my heart aches to be able to tell you Drew has been miraculously healed, but that is not what I get to say right now.  Through my tears I will write that the doctors have given Drew a limited number of days before he gets to sit in God's lap and be held close by him.  I am still praying that they aren't right and that God has some wonderful plan to heal Drew at the last minute, but at the same time my heart groans for Drew every time he gasps for air or seizes with courage.  He is slipping away, bit by bit.  I never knew something could hurt so bad, and yet you have to keep breathing somehow.  The only way I am getting through this right now is by constantly reminding myself that "God is able to do immeasurably more than I can think or imagine." (Ephesians 3)  If He is going to do that and what I'm imagining is Drew healthy, running around in the back yard with Peyton having fun, it must be really good.  I know we will have to go through this pain and work through many struggles, but I also know God is good and will not leave us to suffer alone.  We have had so much support through the nurses, doctors, prayer groups, our church and so many churches and people we don't even know!  We had no idea the reach such a little one could have - we pray that God will change many lives through Drew's life.  He reminds me of a brilliant ray of sunshine that comes and warms everyone in its path but passes quickly to serve another purpose.  Please don't misunderstand me as I write this, we have absolutely not given up on Drew, but he is so far from the Drew we know that it feels that he is gone already in some ways.  God has performed greater miracles.  How will this miracle look?

Details:  The doctors came to talk to us Monday and told us that after looking at his most recent MRI and EEG that his brain is deteriorating.  He doesn't seem to see us anymore and cannot move at all.  Some of his body functions are starting to fail slowly.  The doctors estimate he may have days or weeks to stay with us, but they don't expect he will have months.  His condition/symptoms are in line with a mitochondrial disease, as they have been expecting all along.  We still don't have a diagnosis, but they are 99% sure this is what he's suffering from, and that it's a very severe form of these diseases.  Our prayers are these: that God would still heal Drew somehow, that God will be glorified through this, that Drew will NOT suffer, that God will strengthen our family, that this disease would be limited to Drew and not affect any of our other family members, and that we may be able to have more kids, unaffected by this disease, in the future if it be God's will.

We will try to keep you posted but I am just aching to get back to Drew's side right now and kiss his little head, smell his smell, listen to his heart beating so courageously and just to breath him in so I must sign off.  Thank you all for standing by us through this, we couldn't do it without you.

Sunday, September 14, 2008

A long road, maybe HOME.

Oh my dear Drew... my heart aches for you. I don't think I can get through this post without crying but fortunately there is a box of Kleenex handy. I don't even know where to begin, except to say that we covet every prayer possible for our little Drew. He is so close to God's domain now that I don't know if I am helping anymore, I just pray he is comfortable in God's hands right now.
We went to the ER a week and a half ago with Drew seizing strongly and having problems breathing. At first they didn't know if it was pneumonia, an asthma attack, or choking due to his seizing. He had stopped eating a couple days before, and looking back, I wonder if he was having a hard time swallowing things and knew he shouldn't be eating. We were admitted that Wednesday and they watched him for two days. We were sent home Friday at 3:00. We had been home not 1/2 hour when he had another incident and we were back to the ER by 5:00 with Drew having severe breathing difficulties. I am sure it was due to his seizures - when seizing he couldn't swallow his spit and then after the seizure (one of his stronger, intermittent ones) he would start choking, maybe due to weakness of the muscles that could help him swallow. We gave him a new emergency that night that seemed to have worked really well and we were home by 9:30 p.m. We had a new plan for home too now since that new medication worked.
Over the last couple weeks we had to treat Drew for some stronger seizures but the emergency med we were using was also one of his maintenance seizure meds so the levels in his body were getting way too high. One of the side effects of that med is that it could depress his breathing due to sluggishness so we were trying to wean him off of that a bit as that could have contributed to the problems and now we had a new medication we could try to use at home instead of that one. The only thing about the new one was that we could only use that one twice a week tops as well so it wouldn't get too high and again, possibly depress his breathing. So, the plan a week and a half ago was to only use that one if he got unresponsive or started having problems breathing due to seizures. We made it to Monday before we were back to the ER with severe breathing difficulties and an unresponsive Drew. Mid-day Monday he was doing better after the emergency med but we noticed he had problems so did a culture and found he had a urinary tract infection. We thought maybe we had something easy to deal with and could get out quickly!!! No. We were looking ok, but Wednesday he seemed to have some other symptoms and some more breathing issues so we were examined further and were to stay a bit longer. Wednesday night we nearly had a Code Blue - there were people running everywhere trying to get Drew breathing ok and to get his seizures controlled. (We also had a bad seizure session Tuesday night.) He was ok after that on oxygen, but becoming less responsive. Friday he was even less responsive, gurgling in his breathing, and really working to keep his airway open, all while seizing still. Poor guy. And still not complaining. Friday night they sent us to the ICU for airway support.
I think Friday was the hardest day of our lives to this point - we had a meeting with all of Drew's doctors and nurses. They wanted to know where we stood on how we wanted to support Drew if he took a turn for the worse from this point, and to make sure we understood the seriousness of his condition (even though we don't have a name for it yet!!!). So surreal. Our Drew. Here. Now. Too soon. Why? Just trust.
Anyway, we are still here in ICU, not sure which direction he will go next. He is relatively stable right now thankfully so that is good I guess. He is doing a little bit better today than he had been over the last 36 hours. He was unresponsive yesterday but this morning he started crying again. Just a little, but showing emotion nonetheless. I think he may have actually tried to smile but started seizing because of it. Any exertion right now seems to start a seizure. He is breathing with just a little oxygen, lots less than yesterday. He is keeping his airway open better and is rattling in his breathing a little less. He has a low grade fever sometimes, but low grade is alright for now. He has been tested for pneumonia but doesn't seem to have it - they will do a follow-up x-ray on Monday morning. He has some strange things going on still for some reason that they can't understand though - he is still fairly unresponsive, looking through us rather than at us. He can't sleep for longer than an hour or two at a time. He is flush on only one side of his body, (the same side that was sweating before). He is also retaining water on that side of his body. He still can't swallow so they are drying his secretions with medication which is helping with the choking, but also seems to be affecting his ability to pee possibly - he has to have a catheter inserted every 6 hours (sorry for the additional information but getting it out seems to be therapeutic). As he is doing alright breathing, we are probably going to be released up to the general wards tomorrow morning if he continues to be ok.
On a positive note, we have had one of the best nurses Drew's had yet over the last two days - what a lifesaver. We also have had two of the dearest nurses from the unit upstairs come by to visit - incredible ladies. We have been blessed with some of the most wonderful, caring nurses during this experience. These people have made a huge difference and I don't know how they can do the job they do, but man am I glad they do.
We are surviving as a family right now - challenging time, but life seems to carry on. Our families are here with us which is providing so much support. It is very difficult to talk to many others right now, it just hurts too much and seems like time I would rather spend focusing on Drew. Selfish perhaps, but when faced with the idea of losing Drew possibly in the near future, there is nothing I want to do more than to be with him, holding him, helping him, comforting him, just being there to listen to him breath, and to be close to him. Jordan is amazing - I couldn't ask for a better father for our kids, or a better husband. I have never seen him hurt so much though. I am glad to have him alongside through this challenge. We will make it through with God alongside, but I pray He gives Drew peace. It is so trying to watch him seizing all the time and struggling to breath. I have tried to kiss it better to no avail. I miss my little Drew so much, and I don't want him to suffer. Please pray for him, that God will fix him - either by taking him home, or by making him better. I just don't want him to suffer.
Deep breath. We are hoping Drew may still come through this - there is a chance. He started a new diet last week called the ketogenic diet. We are hoping it could help with seizure control. Also, if we could work his meds out alright maybe he would be able to support his airway better. Maybe this is all just related to a urinary tract infection and the seizures (and too many meds on board to try to control the seizures). The diet is one of the last ideas they have for seizure control for Drew so we really would love to see it work. There is a chance however that something underlying is causing all these complications, with the breathing, weakness, loss of muscle tone, etc. I think the docs wish they knew as much as we do! Drew has made a huge impact on all those around him - his little personality is so amazing. He must just be part angel! Anyway, he is very fragile right now and we are trying to enjoy every minute with him. We love our little Drew more than we knew was possible. We love all of you too, and thank you for your prayers. Please continue to support us in this way!!!

I will try to keep you all posted, but as mentioned, I have a terrible time trying to pull myself away for long! The family finally kicked Jordan and I out of the room last night for some sleep (the first longer bit in at least 3 days... why would we need sleep?) but that felt like much too long of a time apart from Drew! As such, I will sign off now so I can go get another Drew fix, but we love you all.

Monday, September 1, 2008

Oh our dear little Drew

Well, we've been out of the hospital for over 3 weeks now (I didn't say that out loud!), and Drew is doing about the same.  He is not improving but we are learning how to cope with his condition and how to manage it at home.  We have been on the verge of taking him to the ER about 7 times in the last 2 weeks, but after a call to the neurologist on call we have drugged him, waited it out and ended up staying at home each time.  It has been unnerving to say the least, and I don't know if I will get used to this.  Drew usually does fine during the day and then tends to get worse towards evening or in the middle of the night (when one can hardly think straight!).  This is not unusual for seizure kids, as going into and out of sleep are the prime times for seizures.  As he gets tired, his seizures get stronger and sometimes the ones that are usually intermittent, lasting only a minute or two, will get worse and go on for hours without a break.  Those are the ones we try to stop as they seem to bother him more.  I can't begin to describe what goes on in our minds when that occurs, but that's when I wish someone else was making the decisions other than me!  When he gets into these longer ones, he often seems only semi-conscious, and unable to get to sleep.  He can't look around, his eyes start wiggling, his left side tenses stronger and longer, his eyebrow twitches and he gets really weak.  My greatest concern is that these seizures might damage his brain or that if we don't stop them they will just get worse.  I keep asking Drew's neurologist for guidelines about when to push the panic button or when to call but he is just about as baffled as we are.  There are 7 neurologists on the team and a couple of residents and almost all of them are now familiar with Drew to some degree.  When we call the neurologist on call, we usually get one of the residents or one of the other neurologists aside from our primary one.  They are very good and it is so helpful and almost comforting to be able to call 24/7 and get another opinion on what we should do next, but they are so reliant upon our diagnosis of Drew's state and really depend on our input for direction.  I can't seem to remember from one episode to the next how intense the last one was and whether or not we should do something about the new episode.  In one way, I don't really want to because the only thing we can do right now to stop them is to give Drew a good dose of Phenobarb which then completely sedates him and he's dopey for the next couple days.  On the other hand, I don't want to hurt him by not giving it to him.  I just don't know enough about what's going on in his little brain and the impact these prolonged seizures have had to know whether to act on them or ride them out!!!   All of his MRIs to this point have not indicated any deterioration or damage to his brain... thankfully.  Can we just get this in black and white please???  This is my greatest challenge right now!  
I really just want my little Drew back - I miss him.  Insert tears here...  ok, I'll be alright.  Anyway, with all the extra doses we've had to give Drew lately he's not really been himself, and he's also not interested in eating right now either.  He was doing quite well for a while there, but he's not into food right now.  He is fortunately still nursing pretty well and the feeding tube is doing it's job in keeping the weight on thank God.  That is one stress that is pushed to the back burner for now, and I just don't even mind doing the tube thing anymore!!!  
We are doing alright most days, and had a wonderful week in Canmore with my parents last week.  What a peaceful place!  There is just no place like the mountains.  On one hike we did last week, I just kept thinking about the massiveness and majesty of the mountain underfoot,  how great my God is and how he knows all about this little sparrow of his that is struggling.  That comforts me like nothing else, while challenging me at the same time.
The doctor mentioned he is expecting some preliminary results as early as this week or next from Calgary and/or Toronto.  We are praying more fervently now that it is coming closer that there will be some good news.  I pray every day primarily for healing, but also with alot of uncertainty about what to pray.  I just pray that God will bless my little Drew, his brother, our possibilities for future children and our family in the best way He can.  This article has been really helpful and says better than I can what's been going through my head.  The verse from Romans about suffering producing character, endurance and hope and further, a hope that does not disappoint has been in the front of my mind for some time - this just helped put a new spin on it.  If you get a chance you should check this out - http://www.liveasif.org/view.cgi?article=3803.  Anyway, enough on that for now.  I should probably sign out and get to bed before Drew wakes up!  Thank you for keeping us in your thoughts and prayers.

Prayers for the week:
Peace for Jordan and I
Please pray (we are praying hard) that Drew's new antiseizure med will work to stop the seizures or at least to manage them well!!!!!!!
Drew is not using his left side still - as I am his primary therapist I am feeling a little discouraged and partly responsible.  Please pray that God will give me endurance, some good ideas and some hope here, and that Drew will get some movement on this side of his body.
We are thankful for the way God has been involved so far, and that He does not abandon us!