Archive for October, 2008

A Halloween Tale…

October 31, 2008 | Updates

Once upon a time there was a wonderful wizard who loved everything in the world - literally.  He was facinated by the smallest creatures and the largest ones.  He loved nature and science, building things and taking things apart.  His mind was constantly working, thinking, creating.  And that kind of imagination brought him the greatest of joy, no matter what was occuring in his life.

At that time, there was also a great indian child.  This child seemed wise in so many ways.  He was quiet, seldom making a sound.  And, yet, his deep brown eyes gave you the impression that he understood far more than anyone could ever possibly know.  He was kind and gentle and endured all that came upon him with the greatest of patience.  Everyone in his world seemed to sense that they were learning a great deal just by being near him.

There was also, at this great moment, a frog.  This frog was a silly frog.  One who loved to jump and run and give kisses to all those around him.  The frog loved all animals and when he wasn’t acting like his little froggy self, he was pretending to be a lion or a tiger or some other silly creature.  He was a busy little frog and gave his family much trouble as he wandered around getting into everything in sight.  But just when he was about to get in trouble, he would pout his little froggy mouth and look up with his big, blue froggy eyes and say something sweet like, “Tank a Momma.  Tank a.” which his mother could easily translate as “Thank You, Mommy.  Thank You.”

And thus it was in the Jewkes kingdom on Halloween 2008 where it appeared that each little boy had chosen to dress up as something that really fit his character.  And their mother was proud to have such dashing young boys as her children and was ever grateful for the joy they brought into her life…

We had a good Halloween.  I realize 2 of my boys are missing from this picture.  (Don’t act all surprised.  I usually notice if one of them is gone - eventually :).  But Tanner is getting too old to hang out with us on Halloween and Ben was off spending some quality time with Dad while we were unabashedly collecting our candy!  As for the 4 of us that did Trick-or-Treat together, the weather was perfect and we had a great time. 

Here are a few pictures of Nathan after he had combined his candy and Samuel’s into one large bucket.  I entitle the first one, “Whoa! Did you see all the loot I got!” and the second one, “I KNOW you aren’t even BEGINNING to think about touching even ONE piece of candy in this bucket!  Am I RIGHT?  Well, AM I?”

Samuel has been doing better for about 4 days now.  He’s even been giving us smiles.  Yea!  Tonight, he sounds a bit congested again and has had an obvious stomach ache.  (Not from candy!  I mean, did you see the look on Nathan’s face?  Do you really think he was in a sharing mood?)  I’m hoping Samuel will fall asleep soon.  But I think we are slowly getting back to normal.  I’m really hoping that Samuel will be doing well enough to go to school next week.  I could have taken him the last few days of this week, but his sleep schedule is still a little messed up, so he hasn’t been going to sleep early enough to get up in time for school.  Hopefully, I can have that fixed by Monday.

Here’s to hoping you all had a fun Halloween!  Thanks again for all your prayers.

Love,

The Jewkes

Still on the mend…

October 27, 2008 | Updates

I’ve sort of lost track of days here.  I did talk to the neurology nurse the end of last week about Samuel’s constipation and she suggested a homemade enema.  Tell you what, it worked.  Some whole milk mixed with molasses and warmed up.  I put linoleum on the floor in Samuel’s room on top of the carpet about a year ago to help give him more input when he’s on the floor.  It’s ugly the way it’s duct taped to the floor.  But everytime I think about pulling it up, I realize how happy I am that it’s there.  So let’s just say that when that enema kicked in, Samuel’s diaper did no good and had it not been for the linoleum, we would have had to recarpet the room.  Seriously!

Samuel wasn’t kicking and crying and hurting himself all weekend.  Thank heavens!  But, he was miserable.  He just made this little whining noise all weekend and held onto that low grade fever that he’s had for a week now.  He acted the same way he acts when his bladder is full which makes me think he had a stomach ache.  He was also really congested and had me worried there.  And, his seizures that keep him from sleeping came back.  So, for 2 nights and days, he could only sleep about 3 minutes at a time.  Ugh!

However, 2 nights ago I pulled out a big bean bag from the basement so I could sleep on the floor in his room.  And last night, Samuel fell asleep on the bean bag with me and slept from 11 pm until about 1 pm today.  And today, he is MUCH happier.  He still isn’t completely back to normal, but he is closer than he’s been in nearly 2 months.

His little toe still looks so sad, but much better.  His hands are healing right up.  His tongue is healing, too.  One entire side of it is bright red in a splotchy pattern where I am assuming he chewed the heck out of it.  But it is looking better each day.  I still am not getting the smiles I normally get from him, and that makes me sad.  But I am NOT complaining because he is so much better than he has been and I’ll take a full night’s sleep any day!  His oldest brother also has some sort of cold or flu and has been fighting stomach cramps for 2 days, so I’m sure that’s what Samuel is recovering from.

So, here’s to hoping things only go up from here!  I’m a little leary to try another seizure med.  (Ok,  A LOT leary!)  I’m looking into a diet change that may help.  We’ll see.  I’m just hoping we can get back on some sort of schedule.  Hopefully, Samuel can go back to school this week.  I think even he would like that :).  And that might give me some sort of chance to catch up on work.  But trying to cram the last 6 weeks of work into my schedule at any time is pretty much impossible.  Oh, well.  It all has to work out in the end, right?

Thanks for all your prayers.  And, if you sent me an email and didn’t get a reply, it’s not because I didn’t send one.  I usually send a reply to every email or comment, but I got so far behind these last few weeks and then my email was giving me issues and people have said they didn’t get a reply, so I don’t know how many went out and how many didn’t.  Please don’t think it’s because I don’t care.  I do!

Love,

The Jewkes

Things are looking up, I think…

October 22, 2008 | Updates

Ah, it feels like Friday, but it’s only Wednesday.  But that ok, because things are looking up, I think…

We’ve done 2 more blood draws since the last one that came in in the 700’s.  The third one was in the 600’s.  The last one (done on Tuesday) was in the 500’s.  So, Samuel’s liver is healing and that’s certainly a good thing.  However, the posturing, crying, kicking, flopping and always being drenched in sweat continued through Tuesday morning.  We mostly held him every waking hour because putting him down hasn’t been much of an option.  Luckily, he has slept most of each night, with the help of a lot of medication.  That has been our saving grace.

By Monday night, I had just about opted to take him down and check him back into Primary’s.  I was at my wits end and out of ideas of what might be causing it all.  We have all his meds and feedings back to what they were before this all started.  And Monday afternoon, he started running a fever of 101-102 degrees.  This concerned me, so I called the neurologist.  He said to watch him overnight and try to keep the fever down, but not to give him any tylenol as that would keep his liver from healing.  So, I slept on the floor in his room with the window opened trying to keep him cool, but worried that he might get chilled. 

By Tuesday, I was sure we would head to Primary’s.  I called his rehab doctor and explained the whole situation to her and she said the only way to get checked into the hospital would be to go through the ER.  I HATE going through the ER.  I called his neurologist again and he suggested we take him to his local pediatrician one more time to make sure it wasn’t something simple.  I consented to do this - despite the fact we have been there more times than I can count in the last few weeks - for one reason and one reason only…Tom.

Monday evening, Tom gave Samuel a Father’s blessing and blessed him that he might somehow be able to tell us what was wrong with him.  It was probably 3 am that next morning that I finally couldn’t take sleeping on the floor in Samuel’s room anymore and headed up to my own bed.  As I climbed under the covers, Tom jumped slightly and stuck his arm out like he didn’t want me to get in bed and said, “Sore throat.”  I was confused to say the least and said, “Do you have a sore throat?” thinking that he must be sick and didn’t want me to get too close and end up getting sick, too.  He said, “No, that’s what’s wrong with Samuel.  He has a sore throat.”  I laughed silently to myself and thought Tom must be talking in his sleep and said, “Uh, oh, ok?” and climbed into bed and went to sleep.

Tuesday morning, I told Tom what he had done.  He smiled and said, “Yea, I had the most vivid dream.  I dreamt I was holding Samuel and suddenly it came into my mind that he had a sore throat.  So I asked him in my dream if he did and he made a noise that I knew meant yes.  It was so vivid that it seemed entirely real.”  And that is why I consented to go the pediatrician one more time.

And guess what?  Samuel has a sore throat.  Score one huge one for dad!  His toe was also still infected.  So, they switched antibiotics and we came back home.  By Tuesday evening, Samuel was calm and sat on my lap for most of the night.  And today, he has been a very good little boy.  He even sat on his dad’s lap for 2 hours while I went to a meeting this evening.

Samuel still isn’t himself 100%.  I’ve been worried because he seems to be constipated, so I’m working to keep things moving right in him.  He also still has the constant low grade fever and this morning, he sounded congested.  Also, as I was brushing his teeth last night, I noticed he was missing 2 teeth, not 1.  I’m not sure when the other one fell out or where it went.  His mouth has been bleeding for days from his biting his tongue and cheeks, so I didn’t even realize he had lost the tooth.  I just hope it fell out or he swallowed it.  Leave it to me to be worried that he aspirated it and will get pneumonia from it :(.

But otherwise, he is SO MUCH BETTER.  He is calm and making lots of sounds all the time.  I do think he may be having a lot of myoclonus seizures and they are showing up as strange movements in his face.  But I have talked to the neurologist and have decided that we won’t mess with any of his medications until things settle back down and I feel that he is as close to his normal self as possible.  I need to be able to tell what a new med is doing to him and can’t do that if he isn’t feeling well to start with.

Thanks for all your prayers.  We are at least getting sleep at night and can now lay Samuel down for some time during the day and can know he won’t be hurting himself.  Keep praying he will get all the way back to normal - at least his normal.

Love,

The Jewkes

Things always get worse before they get better…

October 17, 2008 | Updates

And I’m still waiting on the better part!  Sorry to have left everyone hanging for so many days.  Honestly, I haven’t had the wherewithal to even post until tonight.  I left off the last post with Samuel still being up despite a lot of medication and it being 12 am.  Here’s the update since then:

THURSDAY NIGHT - Samuel cried until 3 am, then slept until 9 am. 

FRIDAY - The neurologist and I worked out a plan to begin Samuel on Depakene for seizures and Carnitene to avoid liver damage.  The Depakene was begun Friday evening.  The Carnitene wasn’t available from the pharmacy until Tuesday afternoon.  Samuel became more and more irritable through the day.  Despite clonidine, melatonin, tranxene, ambien and seizure meds, he did not sleep but instead postured worse than I’ve seen in over 3 years.  I couldn’t even leave him in his padded bed as his toes were bleeding from kicking the sides and he was drenched in sweat.  I sat next to him throughout the night trying to keep him from hurting himself.

At 4 am, I called Primary’s and waited 45 minutes for the resident on call who was of no help whatsoever.  I finally gave into leaving Samuel in his crib for 30 minutes at a time while I would sleep.  Tom and the boys were out of town, so I had no other options and simply could not deal with it all on nearly 24 hours of no sleep myself.

SATURDAY - I took Samuel to the local pediatrician to ensure I wasn’t missing something that was bothering him.  She checked him over, noted all of the sores on his hands, feet and waist (from his diaper rubbing during his posturing).  She also witnessed him bruise up his arm in his stroller in just a few minutes time.  She noted his chewed up cheeks, lips and tongue.  And she agreed with me that he was becoming dehydrated from not enough fluid for how much he was expending from sweating.  She spent 3 hours with us trying to help figure something out.  In the end, the only person she could get at Primary’s was the same unhelpful resident from the night before so she finally sent us home with some Ativan to help calm Samuel and instructions to increase his fluids to counteract the sweating. 

That night, Samuel did not sleep at all - despite all the medications.  But, the Ativan did calm him so I could leave him in his crib and sleep myself.  I woke every hour to give him liquids and clean his mouth and we his lips and gums.  He actually tried to suck on the wet sponge in his mouth and would swallow small amounts of water everytime I offered them. 

SUNDAY - Samuel finally fell asleep at 9 am (after 48 hours without sleep).  And guess how long he slept?  Five hours.  You’d think longer wouldn’t you?  You’d pray for longer wouldn’t you?  But I was so grateful for even that.  The rest of the day he was calm and I thought we had passed the worst.  I believe that the 2 days of posturing was from withdrawals from Keppra.  I don’t know what else it could have been.  Sunday night, Samuel slept well for most of the night.

MONDAY - Samuel continued to be calm but when it came time for bed, he could not fall asleep.  He began having myoclonus (seizures) that would wake him as soon as he fell asleep.  He was up for most of the night and I stayed with him until about 3 am and then checked on him often througout the rest of the night.

TUESDAY - Samuel began to get upset again.  And, again, he could not sleep when he tried to - despite being so very tired.

WEDNESDAY - By Wednesday, Samuel and I were both exhausted so we phoned Primary’s for help.  They suggested we raise his Depakene at night to try and stop the myoclonus.  At the same time, I had noticed something about Samuel.  He was so tired, all the time, but cried and postured whenever he was awake to the point of sweating and grinding his teeth.  Honestly, we had resorted to switching off with each other and holding him as much as we could.  But when we couldn’t hold him, we would lay him on the floor.  And eventually, he would roll over into a corner of the room onto his side, calm down, and attempt to fall asleep.  After watching him do this several times, I realized that he was always laying on his left side when he did this, so I tried laying him that way when he went to sleep at night.  The combination of laying him this way and increasing his Depakene along with all his other medications was the trick and he finally slept through the night.  Funny thing was, he didn’t wake up happier.  He almost woke up worse.

THURSDAY - Another day of severe posturing and attempting to hold Samuel every waking hour.  He also went to the doctor today because one of his toes is infected from a sore he got from kicking his crib.  So, he is now on antibiotics for that.  They also drew his blood to check his liver panel to ensure the Depakene isn’t causing liver problems.  I called his neurologist to ensure he would look at the blood results before going out of town.  Somehow, they didn’t get looked at.  Samuel did sleep fairly well this night.

FRIDAY - Another day of crying, kicking, posturing, sweating and holding Samuel every moment.  When I called to see why no one had returned my call about the blood panel, the nurse looked up the results and said the on call neurologist would get right back with me.  When I probed to find out the results, she said his panel had been slightly elevated a week ago at 49, but the new test showed it elevated at 800!  So, we were sent off to get more blood drawn and told to stop the Depakene IMMEDIATELY!  Then I was told that we wouldn’t be able to discuss a replacement seizure med until our doctor returns on Monday.

The new levels from today came back in the 700’s.  I was told we won’t have to admit him to the hospital at least right now.  (Not sure how much better that makes me feel.)  We have stopped the Depakene.  We have been given no replacement seizure med and won’t be given one until Monday.  Of my own accord, I have started Samuel back on his Neurontin (1.5 mL’s twice a day) and will continue his Keppra (1.5 mL’s twice a day).  Stupid thing is that we are now a good 6 weeks from the start of this mess and he is back on the exact meds he was on when it all began.  And, he is miserable, mad, crying and posturing 100% of the time he is awake.  But as of right now, he is asleep :).

I am grateful for the small miracle that he is at least sleeping at night.  I feel like I have lost 10 years off my life over the past 10 days.  I feel like a walking zombie.  I know my kids think I’ve lost it because I can’t even speak coherently to them most of the time.  I have a blasted headache that’s been hanging out all week.  And my patience is shot.  It’s times like these where I dread even going out the door.  One wrong comment from someone and I know I will crumple to the floor in tears.  Makes me feel bad for anyone having to deal with me :).

So, that’s where we stand.  I’m not going to say things couldn’t get worse because I’m sure they could.  But I’m hoping I don’t have to find out.  Please pray that we can figure out what is going on with Samuel and get him back to his “normal” self again.  That life is at least bearable.  This one isn’t.

Thanks for your prayers.

Love,

The Jewkes

Can I get a little sedation please?

October 9, 2008 | Updates

Well, two more days gone by and I finally got a call from the neurologist today.  Of course, no one calls me for 2 days despite numerous phone calls to them and then today, both neurologists I’d been trying to reach called me back.  They both gave me game plans for switching to depakote.  Funny thing was, their game plans were totally different.  In the end, we took Samuel to have some blood drawn to ensure his liver is functioning well before we go trying this new med since it can cause liver failure.  Apparently, the risks are 1 in 10,000 if you are under the age of 2 and zero if you are over the age of 10.  So, Samuel’s chances of this medication affecting his liver are somewhere inbetween those two.  At this point, though, he is so unhappy, that I don’t see another option.

I reduced his Keppra to 2 1/2 mL’s twice a day a few days ago.  Today, I reduced it to 1 1/2 mL’s twice a day.  This is the dose he was on before this whole mess began.  Tomorrow, we will start him on some form of Depakote if his blood draws come back good.  Poor kid, though.  Tonight I gave him a bath and he soaked us both.  I’m thinking from now on I’ll wear my robe over my clothes while I bath him and then I can just hang it to dry when we’re done instead of walking around with one side of my body soaked for a few hours :).  After the bath, I gave him clonidine, melatonin and ambien.  I hate giving him a lot of medication, but he hasn’t slept for 3 nights now and I can’t live with him crying all the time AND no sleep.  He fell asleep a bit ago and then I took the time to bandage up his little hands.

Both his hands and his feet have been rubbed raw by him constantly rubbing them against the sides of his crib or the floor or me or whatever else is near him.  He doesn’t do it on purpose.  He has just been writhing around constantly for 9 days now.  He’s also got a cut above his little eye that I don’t know how he got.  And his little arms are bruised from the blood draws today.  His little lips have been really dry, too, from breathing through his mouth as he cries most the day.

You know, the next time someone asks me if I can just live with his irritability for a week or so to see if it subsides, they may be sorry they asked.  The last 9 days have been awful - for both of us.  Maybe I’ll tell them we’d be happy to do it as long as they sedate us BOTH :)!  Otherwise, I don’t think I’m going to be game.

I’ll leave you with a few pictures of all the little bandaids on his hands in an attempt to keep him from rubbing them completely raw.  His feet aren’t as bad, but are headed that way.  And a picture of the bruises from his blood draw.  Not sure why I even let the guy doing the blood draw even try.  He was obviously a greenie.  And Samuel is about the hardest person to stick.  I have got to learn to “just say NO!”  Ah, poor guy!

In better news, I gained another niece today!  She weighed in at 9 lbs 13 oz.  Crazy!  That’s almost twice what little Nathan weighed when he was born.  But he’s done A LOT of eating since then to catch up in size.  I’m a little jealous of her birthday.  I mean who can forget 10/9/08?  Anyway, she looks really cute! 

Well, I have to go.  I can hear Samuel awake and upset in his bed!  Honestly, all that medicine and he only slept an hour.  Calgon!!!  I would take a nice long bath with lots of bubbles, a little chocolate and ear plugs right now.  Doesn’t seem like much until you realize that a few moments of peace has not been on the menu for 3 weeks now and it’s not about to end soon.

Ok, I’ll stop complaining now.  Thanks for listening.  And thanks for all the prayers.  Keep them coming.

Love,

The Jewkes

Update on the Update - Samuel wasn’t just awake when I went to his room.  He was awake and had somehow moved around in his bed in just a few minutes so as to unhook his feeding tube from his extention tube.  In easier terms, his bed was covered in all the contents of his stomach which had leaked out his tube.  So, a new bath, new sheets, new clothes, a load of wash and we’re back in business.  I even held back the tears.  And it’s already after midnight, so the good news is, he probably won’t be up more than 2 more hours.  Ugh, I think I’ll go bury myself in a large bowl of ice cream :(!  Let’s pray for better news from me soon, ok?  Thank you :).  Until then…