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…

The longest 11 days…

October 7, 2008 | Updates

Well, it’s been 11 days since my last post.  It took about 1 week for the Keppra to finally kick in 100%.  Samuel was a little more irritable and had a few less seizures each day.  About last Wednesday, he woke up with no seizures and completely upset.  So, the Keppra did it’s job, but the nasty side effect of irritability is definitely here.  We called the doctor on Thursday and he suggested dropping Samuel’s dose to 3 mL’s twice a day instead of 4 mL’s twice a day and adding 50 mg of vitamin B6.  Then he suggested we wait a week and see if things got better.

Can I just say I haven’t had a week feel this long in a long time?!!!  Samuel has been mad unless he’s been asleep.  Period.  And last night, he didn’t even sleep much.  He and I were together until about 2 am.  Ugh.  Anyway, I’ve got a new message into the neurologist and am hoping he calls me early tomorrow.  We need to try something else.  We have 2 more days before the week is up, but I don’t think I can hold out and watch Samuel struggle through 2 whole additional days.  So, we’ll have to see what the neurologist has to say.

Please pray that Samuel can make it through the next week or so without too much struggle.  He is just miserable and it’s going to take some time for the new med to work.  It’s hard to believe we’ve already been battling this seizure mess for 17 straight days now.  I’m sure Samuel is so tired of feeling awful.

Thanks everyone.

Love,

The Jewkes

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