Penny from Tenny Posted September 4, 2010 Share Posted September 4, 2010 (edited) I have appreciated this board now for years and because of the really difficult situation we are facing, I am going to take the plunge and ask for prayer for our son, Jonathan who is 25. In anticipation of upcoming surgery, tomorrow will be the day when we have to stop one of Jonathan's main seizure medicines. He takes 13 of these a day and will be stopping them cold turkey ten days before the surgery. The epilepsy coordinator has already told us to prepare ourselves that it could be bad. He has to come off the medicine because it affects blood clotting. The Lord has been so merciful to Jonathan and us in that he hasn't had horribly bad seizures during this waiting period but I wouldn't be honest if I didn't tell you that we are not looking forward to stopping this medicine even though we know we have to. We will have valium to give him which is what we currently give him for break-through seizures. We are praying it will hold them to a minimum. Jonathan has been having 1-2 grandmal every few days lately but when they are bad he can have 12-15 episodes daily. Without his VNS he was having 100's of seizures daily. We know the surgery is necessary for his quality of life but it is a very permanent procedure. His surgery is scheduled for Sept. 15 and he will be the 2nd procedure for the neuro-surgeon. The procedure he is having is called a hemispherectomy and is a very drastic surgery for seizures that do not respond well to other therapies. Jonathan has a very difficult form of epilepsy called Lennox Gastaut. We do not know what deficits Jonathan may have from the surgery, but are hopeful that his right side has already compensated for many functions. Our neuro-surgeon, who also does many of the difficult brain tumor surgeries for St. Jude, has never lost a patient from this particular procedure and one of his partners who saw Jonathan for a shunt check prior to surgery feels that all Jonathan will lose is seizures. That was very encouraging. Jonathan's neurologist will be handling the medicine end of this procedure. Intensive therapy will be ordered post-op to try and lessen any deficits he may have. We won't know how often or for how long the therapy may be needed until after the surgery. My sweet Aunt is coming down from Minnesota on the 13th to stay with the kids and hold down the fort during this time. Please pray for her as well and for her husband who will be without her for this time. I know she has things planned for the children to try and lessen the stress of the situation on them. This is such a blessing that she was able to do this for us. Jonathan could be in ICU for 2-3 days but at least 24 hours. The anticipated hospital stay is generally 5-7 days if there are no complications. We are so blessed that our son has been given special permission to have the surgery at our local children's hospital that has an excellent neuro team. We are praying that the Lord be glorified in and through this time and that He will minister to Jonathan in a special way since he won't understand what is happening to him. We would love for the outcome to be that there are no additional deficits than what he currently has and no seizures. Obviously, these are things that we would desire but that only the Lord knows and would perhaps grant in his mercy. We are trusting Him and that if perchance things do not go as we would desire, that He will grant strength and grace to endure. Jonathan has been a miracle his whole life and we are truly blessed because of how the Lord has used him in our lives. Anyway, if you think about us, we appreciate the prayers. I will post updates when I have the opportunity. Thanks and blessings! Edited September 7, 2010 by Penny from Tenny Quote Link to comment Share on other sites More sharing options...
Remudamom Posted September 4, 2010 Share Posted September 4, 2010 All of you have my prayers. Keep us updated on how he does off his meds. Bless you. Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted September 4, 2010 Share Posted September 4, 2010 Wow. I can see why this is a scary time for your family. It sounds like it's mostly encouraging news, but it is brain surgery, after all. I'll definitely pray for your family in the upcoming weeks. Quote Link to comment Share on other sites More sharing options...
May Posted September 4, 2010 Share Posted September 4, 2010 My thoughts and prayers are with you and your family:grouphug: May our Lord God keep your family in His loving care. Quote Link to comment Share on other sites More sharing options...
Dobela Posted September 4, 2010 Share Posted September 4, 2010 :grouphug:I will be praying. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 4, 2010 Share Posted September 4, 2010 Definitely praying here. :grouphug: Quote Link to comment Share on other sites More sharing options...
cjbeach Posted September 4, 2010 Share Posted September 4, 2010 OH my goodnes.. many, many prayers to get you through the time until surgery AND for the surgery. I cannot imagine. :grouphug: Please, please update when you can!!!! Quote Link to comment Share on other sites More sharing options...
JVA Posted September 4, 2010 Share Posted September 4, 2010 You all will be in my prayers. I can imagine how hard this must be. Looks like you have twins like we do.... Many blessings on you. PS- I'm reading a hard, but good book. When God Weeps by Joni Earikson Tada. All of us have tribulations and loss- this is helping me understand better. Quote Link to comment Share on other sites More sharing options...
FriedClams Posted September 4, 2010 Share Posted September 4, 2010 I just prayed for you and your family. Please keep us up to date so we can continue to pray. Quote Link to comment Share on other sites More sharing options...
fhjmom Posted September 4, 2010 Share Posted September 4, 2010 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted September 4, 2010 Share Posted September 4, 2010 I'll be praying, and pass along your request to some very special praying ladies I know. :grouphug: Quote Link to comment Share on other sites More sharing options...
Paintedlady Posted September 4, 2010 Share Posted September 4, 2010 Praying for you and your son. :grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted September 4, 2010 Author Share Posted September 4, 2010 You all will be in my prayers. I can imagine how hard this must be. Looks like you have twins like we do.... Many blessings on you. PS- I'm reading a hard, but good book. When God Weeps by Joni Earikson Tada. All of us have tribulations and loss- this is helping me understand better. Thank you everyone for the prayers! I am always looking for a good book recommendation and I loved what I read about this one on Amazon. I just ordered a used copy to take to the hospital with me. My two favorites on suffering are "Don't Waste Your Sorrows" and "Calm My Anxious Heart" (mainly about contentment in our circumstances). Leaning Hard on Jesus! Quote Link to comment Share on other sites More sharing options...
MamaT Posted September 4, 2010 Share Posted September 4, 2010 :grouphug: Praying for your family, and especially your son. Quote Link to comment Share on other sites More sharing options...
mom31257 Posted September 4, 2010 Share Posted September 4, 2010 Praying for you and understanding! I pray that the surgery will be successful and you are strengthened for the recovery time. :grouphug: My nephew, age 16, has had epilepsy since he was 4 months old. They've never been able to get full control. He has a VNS and is on several meds. He still has seizures, too. He has Celiac and has recently been diagnosed with Mitochondrial disease as well. Quote Link to comment Share on other sites More sharing options...
.... Posted September 4, 2010 Share Posted September 4, 2010 Also praying for you and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
sassenach Posted September 4, 2010 Share Posted September 4, 2010 Praying, praying, praying. I, too, have a son w/ severe CP, poorly controlled seizures, vns, ect. I promise I will pray daily for Jonathan and your family. Update us when you can! Quote Link to comment Share on other sites More sharing options...
lllll Posted September 4, 2010 Share Posted September 4, 2010 Praying here as well. :grouphug: Quote Link to comment Share on other sites More sharing options...
ma23peas Posted September 4, 2010 Share Posted September 4, 2010 Penny! I used to live in Memphis (Collierville is where my siblings/parents live) and I, too, had seizures around his age...I frequented the Semmes Murphy clinic there....they have wonderful neuros in Memphis...be encouraged that he's likely in some of the best hands in this field!! Do you have a strong church family/family-family that can help you out with meals for the younger ones? I know my family would be happy to help out in any way! Praying for all of you! Blessings, Tara Quote Link to comment Share on other sites More sharing options...
jenn&charles Posted September 4, 2010 Share Posted September 4, 2010 Prayers for you all! :grouphug: Quote Link to comment Share on other sites More sharing options...
Sparkle Posted September 4, 2010 Share Posted September 4, 2010 Penny, I'm glad you shared with us so that we can lift you up at this time. Praying for a smooth withdrawal from the medication, and only positive outcomes from the surgery. Keep us updated :grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted September 4, 2010 Author Share Posted September 4, 2010 Penny! I used to live in Memphis (Collierville is where my siblings/parents live) and I, too, had seizures around his age...I frequented the Semmes Murphy clinic there....they have wonderful neuros in Memphis...be encouraged that he's likely in some of the best hands in this field!! Do you have a strong church family/family-family that can help you out with meals for the younger ones? I know my family would be happy to help out in any way! Praying for all of you! Blessings, Tara Thank you Tara, That is so sweet about the meals, but we will be alright. I promise. And yes, Semmes Murphy doctors are all wonderful and Jonathan has the cream of the crop for what he is having done. We don't have any family in the Memphis area at all but we have a wonderful church family where my husband is Assoc. Pastor as well as my homeschool friends. My aunt is coming also to help out. Thanks! Quote Link to comment Share on other sites More sharing options...
juelle Posted September 4, 2010 Share Posted September 4, 2010 I will pray for Jonathan and your family. May God provide for each circumstance of the next few weeks.:grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted September 4, 2010 Share Posted September 4, 2010 Lots of good thoughts and prayers for your son and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
amyable Posted September 4, 2010 Share Posted September 4, 2010 Praying for your son, the doctors, and all your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
Penelope Posted September 5, 2010 Share Posted September 5, 2010 Prayed for you. May God be with you and your family throughout this time, and always. Quote Link to comment Share on other sites More sharing options...
Julpost Posted September 5, 2010 Share Posted September 5, 2010 Prayed for all of you. I'll continue to pray and am thankful to be able to lift all of you up to the Lord. :grouphug: Quote Link to comment Share on other sites More sharing options...
teamturner Posted September 5, 2010 Share Posted September 5, 2010 :grouphug: Praying for all of you. Quote Link to comment Share on other sites More sharing options...
sheryl Posted September 5, 2010 Share Posted September 5, 2010 Penny, (((Hugs))) I will pray for Jonathan and all of you! There really are no words to share. God will sustain your ds and all of you....it's clear you know that from your beautiful letter you wrote. Sheryl <>< Quote Link to comment Share on other sites More sharing options...
kym Posted September 5, 2010 Share Posted September 5, 2010 Praying for all of you.:grouphug: Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted September 5, 2010 Share Posted September 5, 2010 Praying that the Lord will carry Jonathan and all of you through this trial. I know a little of what you speak. Not Lennox-Gastaut here, but my oldest has intractable seizures and a shunt. And it would be very scary to take her off her meds--praying all will be okay and that this surgery will improve Jonathan's life. Wouldn't it be wonderful to never have to worry about seizures! Quote Link to comment Share on other sites More sharing options...
kwickimom Posted September 5, 2010 Share Posted September 5, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
sands1978 Posted September 5, 2010 Share Posted September 5, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted September 7, 2010 Author Share Posted September 7, 2010 (edited) Jonathan had 3 grandmals on Saturday but on Sunday when we stopped his BIG medicine he had NONE; NONE on Monday and only a few this morning. For everyone who is a Christian please be encouraged that sometimes the Lord answers our prayers in ways that are just amazing. I know we have 8 days left, but I'm going to focus on today and just thank the Lord! Our God is an awesome God. Edited September 7, 2010 by Penny from Tenny Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 7, 2010 Share Posted September 7, 2010 :thumbup: I'm so glad that his seizures have stopped. I agree about taking it one day at a time (and when times are really tough sometimes even one minute at a time). Quote Link to comment Share on other sites More sharing options...
BMW Posted September 7, 2010 Share Posted September 7, 2010 I am so happy for your days without the seizures!! Praise God! Will be praying for you all. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted September 7, 2010 Share Posted September 7, 2010 PTL! I will continue to pray, and please keep us updated when you can. :grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted September 7, 2010 Author Share Posted September 7, 2010 I agree about taking it one day at a time (and when times are really tough sometimes even one minute at a time). :iagree: Quote Link to comment Share on other sites More sharing options...
jenniferlee Posted September 7, 2010 Share Posted September 7, 2010 You know, this is very strange, but just 4 days a very good older friend of mine was telling a story about her husband's best friend from their college days (like 30 years ago) who had epilepsy and all the crazy stories about things that had happened to him because of seizures. It was sort of funny (because they all happened so long ago), but I was like "well how is he now???" She said that they tried so many different medications, etc, and nothing really was getting it under control for him to lead a normal life that he finally had this crazy surgery done and it cured his seizures completely. Well, it was the same surgery that you are talking about. It just struck me so odd that I happened to read this thread today (we've been out of town for a while) and that I just heard that story. I have never heard of that surgery before - I was totally amazed when she was describing it. Anyway, I hope it is of some encouragement to you. God bless you as you walk through this time of trial. I will pray for son's complete healing. Jennifer Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted September 7, 2010 Author Share Posted September 7, 2010 You know, this is very strange, but just 4 days a very good older friend of mine was telling a story about her husband's best friend from their college days (like 30 years ago) who had epilepsy and all the crazy stories about things that had happened to him because of seizures. It was sort of funny (because they all happened so long ago), but I was like "well how is he now???" She said that they tried so many different medications, etc, and nothing really was getting it under control for him to lead a normal life that he finally had this crazy surgery done and it cured his seizures completely. Well, it was the same surgery that you are talking about. It just struck me so odd that I happened to read this thread today (we've been out of town for a while) and that I just heard that story. I have never heard of that surgery before - I was totally amazed when she was describing it. Anyway, I hope it is of some encouragement to you. God bless you as you walk through this time of trial. I will pray for son's complete healing. Jennifer Thank you Jennifer. It is an encouragement. And it is a very last resort surgery and isn't done very often. I think less than a 100/year in the U.S. (don't quote me on that) and so many people cannot believe that you could remove half the brain and still be functioning. Around 70+ percent have no seizures after surgery. But, just thinking about it is rather scary, so thank you for your kind words. Quote Link to comment Share on other sites More sharing options...
Hedgehog Posted September 7, 2010 Share Posted September 7, 2010 You have my prayers and sincere best wishes for your son. My nephew (14yo) has epilepsy that cannot be controlled by drugs and it's VERY hard on the whole family. :grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted September 7, 2010 Author Share Posted September 7, 2010 You are right and I'm so sorry. :grouphug: Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted September 8, 2010 Share Posted September 8, 2010 are his seizures multi or unifocal? My friends brother had focal and they removed the area of the brain that they were at because meds could not control it but I believe they only had to remove left temperal lobe. We are touch by seizures my husband was born in full grandmal. Our prayers are with you and your family Quote Link to comment Share on other sites More sharing options...
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