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
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October 18th, 2008 at 10:24 am, Kate Ousley Says:
So very sorry to hear of your problems with Samuel. I’ll add my prayers that things will settle down, meds will be corrected, and you will all get some sleep! -Kate
October 18th, 2008 at 12:32 pm, Natalie Says:
My heart is just aching for you! I know what that is like to deal with a sick child and they won’t sleep and you don’t know what’s wrong or how to fix it. It’s not only physically draining from no sleep but it’s emotionally draining to watch your child suffer. More prayers for Samuel and his super mommy going up today! We love you. I’m sending my diet coke vibes your way!
Nat
October 18th, 2008 at 2:08 pm, Bonnie Larsen Says:
Your sweet updates tug at my heartstrings. You are enduring so much right now.
You will be in our thoughts and prayers.
Love from Wellsville– Bonnie Larsen
October 18th, 2008 at 5:51 pm, Joyce Weister Says:
HELLO PRECIOUS FAMILY. I AM SO SORRY TO HEAR WHAT SAMUEL AND MOMMY HAVE BEEN GOING THROUGH. I AM PRAYING FOR ANSWERS FOR YOU AND PEACE FOR SAMUEL AND STRENGTH FOR YOU. I AM PRAYING THAT YOU CAN FIGURE OUT WHAT IS GOING ON WITH SAMUEL AND THAT HE GETS BACK TO HIS NORMAL SELF AGAIN. ALSO THAT LIFE IS BEARABLE FOR YOU. I ALWAYS SAY THAT THE MOTHERS OF THESE PRECIOUS SPECIAL KIDS ARE HEROES AND SO AMAZING. I KNOW YOU ARE EXHAUSTED, BUT YOU TOOK CARE OF YOU PRECIOUS BOY ALL THAT TIME BY YOURSELF. GOD BLESS YOU. I AM SENDING YOU AND SAMUEL A BIG HUG. YOU ARE ALWAYS IN MY THOUGHTS AND PRAYERS EVEN IF I DON’T GET HERE AS MUCH AS I WOULD LIKE TO. GOD LOVES YOU AND I LOVE YOU. JOYCE
CP:CarePageforPrayer
October 18th, 2008 at 11:00 pm, Suzi Searles Says:
I’m so sorry to hear about the horrible time you have been experiencing. I’m praying right now that God will continue to give you the strength that you desperately need to get through another day. I’m also praying for Samuel to get put on the right medication so that these seizures and fussiness will go away once and for all.
Suzi Searles
October 19th, 2008 at 2:19 am, Tiffany Vara Says:
My heart just broke for you as I read the update…feeling your complete exhaustion, frustration and helplessness. I will be praying that relief and answers will come very, very soon. Thank you for honestly sharing all you have been dealing with — I can only imagine the emotions behind the words. Praying that peace, comfort, and rest would descend on your home this moment…
Tiffany
October 19th, 2008 at 1:55 pm, Darlene Says:
Hello Teresa,
I will continue to send my prayers and lots of warm hugs youe way. I thought they would at least admit him to the hospital due his deyhdration or at least administer an IV fluid in the ER. It really bothers me that they seem to be so heartless when it comes to his cares. Is there anyone close by that can take turns helping you out? Your health is important,you need your rest too. Would a foam eggcrate placed on the sides of his crib help with reducing his injuries? Just an idea that came to mind.
October 20th, 2008 at 12:00 am, Liz and Ashleigh Says:
Oh you must be at your wits end. I am so sorry to hear of the week you and poor Samuel have had. Hopefully you and the neurologist can get a better medication for Samuel. I know our neuro suggested the Ketogenic diet and with Samuel being tube fed it would be quite easy for you. Just something to think about??
Hope things are better this week. Big hugs to Samuel.
Liz and Ashleigh
October 20th, 2008 at 8:55 pm, Sharon Jewkes Says:
Dear Teresa and family. We are so so sorry for all the trials you are facing with Samuel. We hope the doctors can resolve his problem soon. Sometimes I get so disgusted with them, but we need to have them. Our prayers continue to be with you and your family. The Lord promised that he would not give us more trials than we can handle, but I know we sometimes wonder and doubt this when we are going through them. Here is a poem that a friend of mine wrote. It is always a comfort to me when I face trials. I don’t remember if I have sent it before. Forgive me if I have.
When your daily load
Seems heavy,
And your burdens hard
To bear,
Just look toward your
Savior,
Feel His tender, loving
Care.
For to Him you are more
Precious
Than you’ll ever understand.
Just relax and feel His
Presence,
Let Him take you by the hand.
He can make your load seem lighter;
He can brighten up your day.
He will
Make the pathway smoother
As you travel on your way.
For your Father and Creator
Always sets some time apart
For the
Ones who dearly love Him.
He’ll give
Peace within each heart.
© 1996 Nona Kelley Carver
We love you, Sharon