Thursday, February 09, 2012

Services, Seizures, Sunshine, Seizures Medications, Smiles & Seizure Frustrations

Last weekend I was honored to be asked to be a part of a panel of 3 people talking about trials and adversity in our lives and how with God's help we've been able to go on in our lives even though at times those hardships seem like they made our lives look almost hopeless. One of the men talked about how his trials were brought on by mistakes he had made in his life, taking drugs, drinking too much alcohol and eventually getting caught selling drugs which put him in the local jail for 53 days. He talked about how he began to read through the book of Proverbs in the Bible every day and how God helped him to gain wisdom during that time of severe pain and adversity in jail and how now God is using him to bring others to become Christians. The other gentleman talked about how he had to learn to trust God during the past 12 years when he literally lost everything financially in his life, how he had to learn to forgive others for not coming through with things they said they were going to do and how he had to learn to forgive himself for the mistakes he made that led to his financial destruction. Then I shared with the church about Luke's journey and how I have come to rely on Christ's strength alone, that there are some days that the only way I'm able to keep going is by quoting the scripture, I can do all things through Christ who gives me strength over and over again until I begin to believe it. It was not easy sharing the tragic story during each of those 5 services over the weekend, the ONLY way I was able to get through each service was knowing that it God who gives me the strength to go on.

Luke was scheduled for an EEG on Monday afternoon; I had almost cancelled that appointment thinking that we hadn't seen any seizure activity lately so why put him through another EEG just to hear the same report. You can imagine my surprise when the EEG tech said that she had called the neurologist in because Luke was showing quite a bit of seizure activity, therefore she would not unhook Luke from all the wires until the Dr. had an opportunity to come and see him. What should have only been an hour appointment lasted just about 4 hours, we left there with a new script for an increase in the current seizure medication he has been taking lately and with orders to have his blood taken next Monday to be sure his seizure medication is at a therapeutic level. I asked the Dr. what kind of side effects this medication has and was told that they were not anything worth worrying about. I left the clinic feeling like I had been punched in the gut, I was so surprised and saddened to hear that Luke is having new kind of seizures; it was a night of many tears.

Tuesday I woke up to an absolutely beautiful sunshiny day, we don't see many days like that in February. In fact it was so warm I was able to go on a walk/jog without a coat on that day. I remember singing along with the praise songs on my iphone while I was walking, just thanking the Lord for blessing me with such a gorgeous day.
I broke a new time record for the 4 miles I walked that day, it was a gift from God to be able to enjoy something as simple of enjoying that time with no stress bothering me.

Wednesday I woke up way later than I wanted to, poor Luke stayed in bed way later than normal that morning. I had a hard time getting anything accomplished, just felt worn out from the week already and it was only half way done. That day I wrote a post out on my fb to see if any of the mom's on a near drown site had any experience with seizure medication that Luke is currently using, hoping to hear a good report about this med he is on. Later that afternoon I spent about 3 hours in the kitchen cooking up a ten pound package of hamburger making enough taco and spaghetti meat for about 6 meals, including our meal of taco’s that evening.

Thursday morning I checked my fb to find many of the mom's posted that their kids had used Depakote (Valporic Acid) some with no bad side effects, other with very bad side effects, the worse being that one of them almost had serious liver problems because of that med. That once again sent me into a spin, I was very angry that Luke's neurologist didn't even mention that one of the possible problems with this medication can be very serious liver damage along with a long list of other problems. I went for a long walk, during which time I spent most of it crying out to God, asking him to help me not to be angry at this Dr., asking him to lift some of the burden I've been carrying lately with all of Luke's current medical needs, asking him to work a miracle today, asking him to help me to stay strong, because I was feeling so very weak, I'm sure that anyone that saw me walking and talking to myself probably thought I was a very needy lady. I took Luke to the Hyperbaric chamber in the afternoon, which I'm trying to do again knowing that HBOT helps with seizures and also will help to completely heal his surgery wounds, which by the way are looking really good.

During all this week I'm so very thankful that Luke seems to be his smiley self again, after losing that smile for so long it is such a great relief to once again be blessed with his sweet smile. He also seems to be doing pretty good, except for the fact that he has been extra "junky" lately.

PLEASE be praying that God will give me wisdom to know exactly what to do about this current seizure medication Luke is on, while I don't want him having seizures, I also don't want his liver to be destroyed by this medication. Also be praying as we have quite a few appointments coming up next week. Monday I have to take him in the morning to have his blood work done, and then we have his surgery follow up appointment at 1 pm and his respiratory follow up appointment at 2:45, a very full day of appointments. We also have an orthopedic appointment on Thursday, which is the appointment I'm trying so hard not to be anxious about, especially since we have to find a new Orthopedic Dr. since his last one moved away last month. I already know from the CT scan Luke had many months ago his hips are out of socket, I’m praying that this Dr. will not just tell us that Luke’s hips don’t really matter anymore since Luke does not and will not walk for the rest of his life, that is what I’m usually told by these Dr.’s. Have I said how hard these appointments can be?? Thank you for your continued prayers, they are what keep us going:-)

Love in Christ,

Luke’s Mommy Sue


Anonymous said...

Praying for you today.

Michelle said...

Oh my gosh he looks so cute when he smiles! I'll definitely be praying for Luke.

Michelle & girls

gillian said...

I've followed Luke's journey for a long time - but have never posted. My daughter has been on valproic acid (epival) for a couple of years. We really didn't see any of the side effects. Our neuro and neuro pharmacist both said that it is well-tolerated - and that the liver side-effects would be seen within the first four weeks and are usually just in children under two. Also seen mainly in children with organic brain issues, not brain injury (my daughter is recovering from viral encephalitis). I know that people have had really bad luck with it - but that goes for any AED really (keppra was our nightmare). We are currently weaning it because we started rufinamide (along with Trileptal) and it interferes with the ketogenic diet (which we're on). Anyway, I hope I helped to calm you a bit. We were terrified when we started it - truly. And she was fine.

Anonymous said...

I have seizures myself also took depakote switched to keppra ill pray for youll. Hopefully it turns out ok