Archive for September, 2008

We’re Home

September 26, 2008 | Updates

We spoke to the doctors yesterday morning and they agreed that we could come home and work on adjusting meds here.  We made it home about 5 pm last night.  Samuel was smiling when I put him in the car and again when we walked in the house.  I’m so sure he knows what’s going on and wanted to come home as well.  He wasn’t in a great mood the rest of the night though although he was having less seizures.

This morning, he woke up and was again not in the greatest of moods.  However, he hasn’t had near as many seizures today and is much more aware.  Trouble is that he is only happy when we’re leaving him alone.  Any touching or working with him and he gets upset.  I’m hoping that it’s due to the fact that he appears to have the cold that I’ve been battling all week.  The only other option would be that the Keppra is making him in a foul mood.  Let’s hope it’s the cold.  We’ll give him until Monday and see if it goes away.  If so, I think we’ll be on the right track and on to “normal” again.  Otherwise, it will be a long quest to find a new drug that doesn’t make him irritable.

It’s good to be home.  I REALLY missed the boys!  Thanks to everyone who called and emailed about Samuel.  Let’s hope things settle right down within a few days.

Love,

The Jewkes

Hoping to go home…

September 24, 2008 | Updates

Most of you won’t even know I’m posting this because I can’t send out emails from the hospital.  For some reason, I can only receive them.  But, this website is a lot for me to just keep track of things anyway, so I’m going to go ahead with this post.

We got the results of Samuel’s blood and urine tests and EEG back on Tuesday.  They did a 35 minute EEG and within that time, Samuel had 12 seizures.  They were mostly generalized seizures meaning that they involve the entire brain and not just one section of it.  This is important to know when choosing a seizure med.  So, they have raised Samuel’s seizure med dose over the last few days.  He was getting 1.5 mL’s of Keppra twice a day and 1.5 mL’s of Neurontin twice a day for seizures when we got here.  For the last 24 hours, he has been getting 4 mL’s of Keppra twice a day and we are now reducing his Neurontin as is doesn’t seem to be doing him any good and it’s not a great seizure med to begin with.

Last night and today, Samuel seemed a bit better.  He is still cycling in and out of the seizures all day long, but he is out of them more often than he has been in the last week.  He also is having smaller and shorter ones in his sleep than he was before.  When the neurologist did rounds this morning, we decided that if he wasn’t better by tomorrow (Thursday morning), then we would start trying a new drug - Depakote.  But this afternoon, we went to a neurology appointment that we have had scheduled for several months now and I think I changed my mind.  Our regular neurologist said that it could take up to 2 weeks for the Keppra to be most effective for Samuel.  He said he would do whatever I wanted, but in talking to him, it seemed like it might be a good idea to give the Keppra some time before writing it off as ineffective - especially because Samuel is doing a bit better.

We also spent some time going back over Samuel’s prior brain scans.  Again, his original MRI showed some slight damage in the basil ganglia portion of his brain.  The rest of his brain appeared normal.  The MRI a year later showed even less damage in the basil ganglia and a very slight reduction in brain matter.  Again, the conclusion was that it is very difficult to find damage to Samuel’s brain on any of his scans.  But in looking at him, it is clear that the small amount of damage has had a huge effect on his abilities.  In the end, his brain scans simply don’t fit his abilities.  But that is often true of children like Samuel.  Some children show extensive damage on scans and don’t appear to have any side effects from it.  Weird, huh?  I guess if nothing else, I just like to think that even though Samuel can’t move like he should, his brain is still intact enough for him to understand us and learn throughout his life.

When we returned to our room, I did some research on Keppra, Depakote and another alternative Lamictal and I feel like Keppra is probably the safest choice of them all.  Depakote can cause liver failure and problems with the pancrease.  Lamictal can cause fatal skin reactions.  Of course, these are not extremely common, but they are common enough that they do blood tests twice a year to test for liver failure with Depakote and if you get any sort of a rash with Lamictal, they take you off it.  So, I would rather deal with Keppra if we can get it to work without a lot of side effects - like sleepiness or irritability.

So, my suggestion to the doctors tomorrow will be to let us go home and continue on the Keppra for a few weeks to see how things settle out.  If it doesn’t work, I already had my neurologist promise me that he would be available and easily accessible to discuss alternatives.  We’ll see what they say about that plan and, hopefully, we’ll head home tomorrow.

Samuel has been a very good boy the whole time we’ve been here.  He has been very sleepy - sleeping 19 hours straight the first night we were here - but also smiley when he’s awake.  We’ve seen a lot of nurses and therapists who cared for Samuel 3 years ago and they all remembered him right away and couldn’t believe how he’d changed and grown.  It’s incredible to see what an impact he had on all of them.  And it was a great joy for each of them to get a smile from him when they had never seen his beautiful smile before.  Plus, I guess he didn’t have his little freckles back then and everyone is smitten with those as well.  He has dealt with all the pokes and prodes and been a really good sport.  I could tell he was feeling better today because he was giving the nurses a much harder time.  I always enjoy watching them struggle to change his diaper or give him his meds.  They always comment how wiggly he is and I just laugh to myself because they have no idea :).

Anyway, I miss my kids and hubby.  And…my shower, my private bathroom and my bed…ah, my bed…this little fold out chair in the room is better than the floor, but not by much!

Pray we get to come home tomorrow and we get this all under control soon!

Love,

The Jewkes

Staying at the PCMC…

September 22, 2008 | Updates

Well, things are a little off right now.  Samuel and I are actually at Primary Children’s Hospital trying to figure out what is bothering him.  Basically, the last month has been spent trying to get Samuel back on a schedule where he is able to stay awake for a full morning of school and then tolerate his home therapies in the afternoons.  We were just about there last week when he suddenly starting acting really off.

Tuesday all day, Samuel was pretty lethargic.  On Wednesday, I had planned to go to school with him for a meeting I had there.  Samuel seemed fine all morning, but about 10:30 am, he was suddenly just staring off into space and no longer participating with us at all.  By 11 am, he was sound asleep and we simply couldn’t wake him.  I watched him pretty closely all day and was convinced he was having silent seizures that he cycled in and out of the entire day.  By 5 pm, I decided to take him to the local ER.  Honestly, that was a mistake.

We spent 5 hours in the ER.  They did a little blood work and didn’t find anything.  I explained to them that he never holds still.  But it’s hard to explain just how wiggly he normally is.  I tried showing them how when he was staring off in space, his arms were tight.  But they didn’t feel tight to them because they don’t understand how utterly limp he normally is when holding still.  I tried to show them how he would act normal for a few seconds and then flinch and go back to staring off into space for several minutes.  But he would also respond to sound and track them, so they didn’t consider it a problem.  In the end, he WATCHED the nurse remove all the tape and IV from his hand without the slightest bit of protest and I knew he was not feeling well, still.  But I couldn’t convince them.  They sent me home with a piece of paper on how to deal with muscle spasms.  If you know Samuel’s history with severe posturing, you’ll know that was about the equivalent of slapping me in the face.  In their defense, they don’t know Samuel and don’t deal with kids like him often.  But I wish they would learn to listen to mothers more than blood tests - because something just wasn’t right.

Thursday was the same.  Samuel was extremely lethergic.  I spoke with the neurologist on call at Primary Children’s 3 different times between Wednesday and Thursday and once with our neurologist on Thursday.  Finally, I was given some Diastat to give to Samuel on the assumption that if he was having continuous seizures, the Diastat should stop them.  The Diastat put Samuel out cold for a good 14 hours.  And Friday morning, he seemed more alert.  So, we loaded the car and headed out of town for a short trip we had planned weeks before.

By Friday afternoon, it was clear Samuel wasn’t feeling much better.  I watched him closely for the duration of the trip.  Ridiculously enough, as we packed up to come home Sunday morning, I realized I had a bladder infection and spent the whole afternoon trying to get myself taken care of so we could get Samuel to Primary’s.  Then Sunday evening, we headed down to Salt Lake and checked Samuel into the ER.  I had done all the begging I could to try and get Samuel in for a neurology appointment without having to go through the ER, but they are scheduled months out and said the only option for seeing them was to come through the ER.  So, here we are.

So far, they’ve done an EEG, blood work and urinary samples.  We won’t have the results of all that until tomorrow.  Basically, Samuel has no syptoms.  He has no fever, no vomiting, no cough, no runny nose, no sore through or ear infections, etc.  He is just very lethargic…and very twitchy (in my opinion).  I am still convinced that it is all due to seizures that are hard to see and fairly silent.  Hopefully, we’ll have some answers tomorrow and be home soon.  Until then, we’ll be hanging out here.

Honestly, it hasn’t been too horrible.  Last time we were staying here was December of 2005 when Samuel had RSV just a few months after we’d spent 8 weeks here.  That stay was horrible.  I was nearly hyperventilating the entire time scared to death we would be stuck here forever again.  This time, I’m just grateful to be here and grateful to have people to are willing to listen to me - despite Samuel’s lack of symptoms.  There are doctors here who know him and who know that he is not a kid who holds still.  I just can’t tell you the relief to have someone who actually believes there is something wrong and doesn’t treat me like I’m overworrying or crazy.  I’m never quite sure how doctors who don’t know him can dare to make any sort of judgements at all.  I mean, exactly what standard are they comparing him to?  Who knows. 

Anyway, keep Samuel in your prayers.  Hopefully, our stay won’t be long at all.

Love,

The Jewkes

Ordinary Miracles…

September 13, 2008 | Updates

I know it’s been a while since I’ve posted.  And, I should write about all we’ve been doing.  But I don’t feel like writing about that stuff tonight.  Tonight, I want to write about miracles.  This post was inspired again by our family pictures.  When I logged back on to view them tonight to choose which ones I want to order, Kam (our wonderful photographer) had set our slideshow to music.  And she couldn’t have chosen a more appropriate song for our little family.  It brought me to tears and I just wanted to write about how absolutely blessed we are.  I’m sure many of you can relate in similar ways.  And I hope that as you read this, you will think of the little things in your lives that are miracles.  The song Kam chose for our little family was “Ordinary Miracle” by Sarah McLachlan (one of my favorite singers).  If you have the time, the instructions on how to view the slideshow again (with the music) are in the post following this one.

As I watched the slideshow tonight, my mind flooded with memories from the history of our little family.  It all began with a 16 year old girl and a 17 year old boy who met in high school too many years back.  The odds were stacked against them.  They were too young to date exclusively and, honestly, shouldn’t have.  They spent their final year in high school 400 miles apart and wrote to each other every day.  And soon after high school, they were married - just 18 and 19 years old.  It was in those circumstances that our little family began.  And within a year, as we struggled to support ourselves, driving an old beat up Ford Taurus and living in a tiny apartment, going to school and working, our first son (Tanner) was born.  What a struggle it was to keep up with everything with a new baby in our midst!  But he was such a joy that we never regretted having him early on in our marriage.

There were a lot of moves those next few years and lots of hard work, but 5 years later, I graduated from college just 3 weeks after adding our second little boy (Weston) to our family.  And on graduation day, we moved to our first home.  It was in that home that most of our memories as a family were formed.  It was 4 years later that our 3rd little boy (Benjamin) entered the mix and how glad we were to have him in our lives.  At 2 months old, a tumor was discovered near his brain and we had our first encounter with Primary Children’s hospital and with the fragilness of life.  How little we knew that we would return there not so many years later during the most tragic event in our lives.  But fortunately with Ben, a very scary surgery, a few days in the hospital and months of healing and he was fine.  But it had changed us in some ways and we knew enough now to hope and pray for the health and safety of our young boys each and every day.

So, when boy number 4 (Samuel) hit our home, there was no sadness that we hadn’t conceived a girl.  We were simply thrilled that he was healthy.  And by that time, we had put in enough hard work to be able to try our hands at our own business full-time.  It was a crazy mix of things and very stressful.  But I was finally blessed to at least be home everyday with this new little one and his brothers - even if I was working much of the time.  I grew very close to Samuel and he and I were inseperable.  When he was 2, we moved to a larger home since our 1200 square foot home was bursting at the seams with 6 of us.  And just 6 weeks after that move, he had the accident that inspired this website.  What a trial that I pray to never again relive!  Yet, the things I have learned I can never repay.  Samuel is still an angel in our midst each and everyday - teaching us the things that are truly important.  Teaching to be more patient, more loving, more kind, more tolerable, more faithful, more believing, more understanding, and so much more.

And then, just 11 months after that fateful day, boy number 5 (Nathan) made his surprise appearance into our lives.  It was a rocky beginning as he was our only premature baby, but within a few weeks, he appeared to be doing well.  However,  I thought my heart could never learn to love this new little boy.  It seemed to be too shattered from all that it had lost just months earlier.  I didn’t understand how God could expect me to take Nathan into my life.  Today, just 2 years later, I count him as one of my greatest miracles also.  I don’t know if anything else could have ever repaired my heart as much as Nathan did.  And I will be eternally grateful to a Father in Heaven who knew what I needed and blessed me with this beautiful, blond haired, blue eyed boy.

In the last 3 years, we have experienced so much.  We’ve been in more car accidents and fires than I care to remember, been in more doctor’s offices and hospitals than I can ever forget.  We’ve traveled more of the world than ever before, and yet stayed home more than we ever would have imagined.  We have cried more than anyone should and laughed to keep ourselves sane.  And now, as I watch these pictures of myself, my husband, and my 5 boys, I realize I have been blessed more than I ever would have imagined.  Each of them is precious.  Each of them is a miracle.  Each of them is a gift from God, as are all of our experiences - good and bad.

I have had 2 people ask me this week if I still believe God will heal Samuel since it’s been so long and he still is not better.  In essence they are asking, when and if I still believe our miracle will come.  I have written this before, but I do not believe our miracle will come in one moment in time.  I believe we are living in the midst of one.  And it may be decades before it is complete.  I do not know.  What I do know is this…

Samuel should have died.  I have read story after story of near drownings and the outcome is always different.  But we have definite details indicating that Samuel was in the water at least 9 minutes AFTER 911 was called.  I would estimate at least another 2 minutes before CPR was started.  And at least another 4 minutes (at least) before that phone call was made.  Children in the water for 15-18 minutes do not recover as much as Samuel has.  They live their lives unresponsive.  They live their lives with traches and on vents.  They can’t see.  They can’t hear.  They can’t move.  They can’t smile.  They don’t appear to understand things.  And, they don’t normally improve. 

I know there is a long road ahead.  And I know this could very well be a lifetime of constant care for this not so little boy anymore.  But I don’t want ANYONE to see that as me not getting my miracle.  I’ve already had one, two, three, four, five, six…so many miracles.  And I know that God will continue to bless us with the things He knows we need.  My search for things to help Samuel is not evidence that I don’t have faith he can be healed by God.  It is exactly the opposite.  I am willing to do all that I can to help God heal him no matter how remote that possibility may seem.  But, if it doesn’t happen in this life, I won’t fault God.  Because I have already been blessed beyond measure.  It is all the “ordinary” and not so “ordinary” miracles in my life that I am thankful for.  And I just want everyone to know that!

Love,

Teresa

Family Pictures are Ready!

September 3, 2008 | Updates

So, if you read my last post, you know that I was COMPLETELY stressed that none of our family pictures (that I stressed, worried and, yes I admit, probably obsessed over) wouldn’t turn out.  But come on!  The last family pictures we had taken were when Samuel was a baby so we were well over due.  And, I REALLY wanted some good pictures with Samuel in them…

Well, I got to preview them today and all I can say is, “Man, oh, man, I really should learn to have at least a little faith!”

Below is the link to the pictures.  And, honestly, the photographer is incredible!  I don’t know how she did it, but she did.  And I am so VERY, VERY thankful…

Go to www.photographybykam.com

Click on “portraits”

Click on “portrait preview”

Password is jewkes (all lowercase)

The pictures will be online for a week.  ENJOY!  I know I did!

Love,

Teresa

P.S.  If you want great pictures, get them taken by Kam.  I doubt there is a more difficult family to take pictures of than ours right now with Nathan AND Samuel in the mix.  And, yet, she made it happen.  But if you do go to her, tell her I referred you so I can get a credit for our next session - K!