Penny from Tenny Posted June 29, 2011 Author Share Posted June 29, 2011 We are so thankful (and drained). Jonathan made it through his surgery with no difficulties and without excessive bleeding. Because his body has been stressed from all the surgeries they are leaving him on the ventilator for now. It was difficult to watch him fighting the ventilator until they finally got the sedation at a level where he can relax. We are back in ICU and he is stable and resting. The doctor was a little surprised at a gelatinous substance in the brain that has formed since Saturday that he has never encountered before (and believe me, he has had plenty of experience). This is most likely the culprit that is keeping the shunt from draining. Only time will tell if this substance will continue to form, and if it does then the likelihood of the shunt working is not very good. This was not good news but we are trying to remain hopeful. Nothing is impossible with God, right? I will probably not post again until we have a better picture of what the results are (but, hey, it is a woman's prerogative to change her mind and mine is not fully functioning right now anyway). I am trusting the Lord because he has been so faithful to bring Jonathan through so much and I shouldn't doubt his continued faithfulness, but nevertheless, this is so very hard. Every muscle in my body is in knots as I watch him. Thanks so much for everyone's kind words and prayers. Please don't stop praying. Praying the Lord will be glorified in this situation, Penny Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted June 29, 2011 Share Posted June 29, 2011 I'm glad that Jonathan came through the surgery ok. You must be so exhausted. And to still not know if it has really worked. . . I'm so sorry. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Parrothead Posted June 29, 2011 Share Posted June 29, 2011 I'm glad they are finding answers. Post when you are able. :grouphug: Quote Link to comment Share on other sites More sharing options...
MelanieM Posted June 29, 2011 Share Posted June 29, 2011 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
KnitWit Posted June 29, 2011 Share Posted June 29, 2011 Continuing to keep you all in prayer. Praying you can find some rest. :grouphug: Quote Link to comment Share on other sites More sharing options...
newlifemom Posted June 29, 2011 Share Posted June 29, 2011 Just saw this. Will pray for clarity with the drs and a workable plan. Your faith gives me faith, thank you. :grouphug: Quote Link to comment Share on other sites More sharing options...
mommyofthree Posted June 29, 2011 Share Posted June 29, 2011 :grouphug::grouphug: Praying for your continued strength and faith. Quote Link to comment Share on other sites More sharing options...
KayT Posted June 29, 2011 Share Posted June 29, 2011 :grouphug: Praying for Jonathan and all of you. Quote Link to comment Share on other sites More sharing options...
Pink Fairy Posted June 29, 2011 Share Posted June 29, 2011 Praying for your precious boy. :grouphug: Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted June 29, 2011 Share Posted June 29, 2011 I'm praying for Jonathan as he recovers from the surgery and praying that the gelatinous substance doesn't form and the shunt is able to function. Also praying for you and all who have been with him through the whole ordeal. Your faith is amazing - thank you so much for sharing your journey with us. Praying you are able to get some good rest too. :grouphug: Quote Link to comment Share on other sites More sharing options...
athomemom Posted June 29, 2011 Share Posted June 29, 2011 :grouphug: Praying for you, your son and family! :grouphug: Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted June 29, 2011 Share Posted June 29, 2011 Praying, praying and praying some more.:grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted June 30, 2011 Share Posted June 30, 2011 Praying for you, your family, and your sweet boy.:grouphug: Quote Link to comment Share on other sites More sharing options...
i.love.lucy Posted June 30, 2011 Share Posted June 30, 2011 I agree with above, you strength and faith are amazing. God is a God of wonders and miracles. I will pray for some for your son. :grouphug: Quote Link to comment Share on other sites More sharing options...
sheryl Posted June 30, 2011 Share Posted June 30, 2011 Yes, praying for your Jonathan! Thank you for sharing. My 12 yo dd has a different type of epilepsy....know how difficult this is for you. May I say though you sound strong in the L-rd! Quote Link to comment Share on other sites More sharing options...
Luckymama Posted June 30, 2011 Share Posted June 30, 2011 I wish I could sit with you :grouphug: Quote Link to comment Share on other sites More sharing options...
Remudamom Posted June 30, 2011 Share Posted June 30, 2011 You are all in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
jenL Posted June 30, 2011 Share Posted June 30, 2011 Praying, Penny! May God bless you all and heal your sweet boy. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
elegantlion Posted June 30, 2011 Share Posted June 30, 2011 He will continue to be in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
TCB Posted June 30, 2011 Share Posted June 30, 2011 Continuing to pray. Jonathan is on my list. Quote Link to comment Share on other sites More sharing options...
Kirsten in MO Posted June 30, 2011 Share Posted June 30, 2011 I will pray most fervently. :grouphug: Quote Link to comment Share on other sites More sharing options...
LauraGB Posted June 30, 2011 Share Posted June 30, 2011 So glad he came through the surgery all right. Hoping and praying things go well :grouphug::grouphug::grouphug:. Quote Link to comment Share on other sites More sharing options...
Impish Posted June 30, 2011 Share Posted June 30, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
Granny_Weatherwax Posted June 30, 2011 Share Posted June 30, 2011 Praying Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted June 30, 2011 Share Posted June 30, 2011 We are so thankful (and drained). Jonathan made it through his surgery with no difficulties and without excessive bleeding. Because his body has been stressed from all the surgeries they are leaving him on the ventilator for now. It was difficult to watch him fighting the ventilator until they finally got the sedation at a level where he can relax. We are back in ICU and he is stable and resting. The doctor was a little surprised at a gelatinous substance in the brain that has formed since Saturday that he has never encountered before (and believe me, he has had plenty of experience). This is most likely the culprit that is keeping the shunt from draining. Only time will tell if this substance will continue to form, and if it does then the likelihood of the shunt working is not very good. This was not good news but we are trying to remain hopeful. Nothing is impossible with God, right? I will probably not post again until we have a better picture of what the results are (but, hey, it is a woman's prerogative to change her mind and mine is not fully functioning right now anyway). I am trusting the Lord because he has been so faithful to bring Jonathan through so much and I shouldn't doubt his continued faithfulness, but nevertheless, this is so very hard. Every muscle in my body is in knots as I watch him. Thanks so much for everyone's kind words and prayers. Please don't stop praying. Praying the Lord will be glorified in this situation, Penny Oh, Penny:grouphug::grouphug::grouphug::grouphug: What an absolutely heartbreaking situation. I hope and pray the surgery is a success and your son's suffering will cease! Please keep us posted. I am so sorry for your son, and I can't even imagine what this is doing to you. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
LibraryLover Posted June 30, 2011 Share Posted June 30, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted June 30, 2011 Share Posted June 30, 2011 Praying for healing for Jonathan and continued strength for your family. Quote Link to comment Share on other sites More sharing options...
Imprimis Posted June 30, 2011 Share Posted June 30, 2011 Prayers and well-wishes for Jonathan. :grouphug: Quote Link to comment Share on other sites More sharing options...
Hockey Mom Posted June 30, 2011 Share Posted June 30, 2011 My most heartfelt prayers for your son. :grouphug: Quote Link to comment Share on other sites More sharing options...
Patches Posted June 30, 2011 Share Posted June 30, 2011 Praying. Quote Link to comment Share on other sites More sharing options...
Amy+2 Posted June 30, 2011 Share Posted June 30, 2011 :grouphug:Praying!:grouphug: Quote Link to comment Share on other sites More sharing options...
Gailmegan Posted June 30, 2011 Share Posted June 30, 2011 Praying! Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted June 30, 2011 Share Posted June 30, 2011 Please do keep us posted. Quote Link to comment Share on other sites More sharing options...
mazakaal Posted June 30, 2011 Share Posted June 30, 2011 Oh, my. I am so sorry for what you and your son are going through. I will certainly keep you all in my prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
wendylee Posted June 30, 2011 Share Posted June 30, 2011 I have a "special son" as well. Your words "and still loves Barney", oh that got me going. :>) I'm praying for you and your darling right now. Quote Link to comment Share on other sites More sharing options...
LunaLee Posted June 30, 2011 Share Posted June 30, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
iona Posted June 30, 2011 Share Posted June 30, 2011 :grouphug: praying for you Quote Link to comment Share on other sites More sharing options...
Stacia Posted June 30, 2011 Share Posted June 30, 2011 Continuing to send :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted June 30, 2011 Author Share Posted June 30, 2011 (edited) Some good news! Jonathan's CT scan this morning showed that the surgery on Wed. has been successful in decreasing the fluid in his ventricles! We are thankful for the first good news in 3 weeks. We are trying to be hopeful but have had to have some really difficult conversations with the doctors today about potentialities if the shunt doesn't continue to work (think hospice - and just so you know, people do not normally die from a shunt malfunction, but it is a very real possibility for our Jonathan. His case is a very unique case and I wouldn't want anyone to think this is the norm or be afraid if you know someone with a shunt. As a matter of fact, the doctors have never had a patient die from a shunt malfunction). My emotions are pretty spent and I don't know that I've processed all the info we got today. The doctors are checking the fluid for any infection and for the level of protein, and, if all is well, they will take him back to surgery tomorrow to internalize the shunt. We are cautiously optimistic that this will work, but know that he is still in the Lord's hands. Jonathan still has not woke up fully from all the sedation on the ventilator which was removed this morning with no problems after his CT scan. I really would love for him to be awake before he has to go under again, but that is just the mom in me. Thanks again for all the kind words, pm's, and prayers. They are still very much appreciated....(ETA: the prayers, I mean) So thankful for our little ray of hope today, Penny Edited July 1, 2011 by Penny from Tenny wanted to be clearer Quote Link to comment Share on other sites More sharing options...
kwickimom Posted July 1, 2011 Share Posted July 1, 2011 Some good news! Jonathan's CT scan this morning showed that the surgery on Wed. has been successful in decreasing the fluid in his ventricles! We are thankful for the first good news in 3 weeks. We are trying to be hopeful but have had to have some really difficult conversations with the doctors today about potentialities if the shunt doesn't continue to work (think hospice - and just so you know, people do not normally die from a shunt malfunction, but it is a very real possibility for our Jonathan. His case is a very unique case and I wouldn't want anyone to think this is the norm or be afraid if you know someone with a shunt. As a matter of fact, the doctors have never had a patient die from a shunt malfunction). My emotions are pretty spent and I don't know that I've processed all the info we got today. The doctors are checking the fluid for any infection and for the level of protein, and, if all is well, they will take him back to surgery tomorrow to internalize the shunt. We are cautiously optimistic that this will work, but know that he is still in the Lord's hands. Jonathan still has not woke up fully from all the sedation on the ventilator which was removed this morning with no problems after his CT scan. I really would love for him to be awake before he has to go under again, but that is just the mom in me. Thanks again for all the kind words, pm's, and prayers. They are still very much appreciated. So thankful for our little ray of hope today, Penny I am glad you got some good news, even though its still a tough road ahead. I will continue to pray for Jonathon Quote Link to comment Share on other sites More sharing options...
CourtneyMI Posted July 1, 2011 Share Posted July 1, 2011 We are praying for you here as well. I just cannot imagine. Your faith is inspiring. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted July 1, 2011 Share Posted July 1, 2011 Penny, I'm glad for the small ray of hope. I'm so sorry that there is even the possibility of hospice. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Parrothead Posted July 1, 2011 Share Posted July 1, 2011 I'm glad there is a bit of good news. :grouphug: and continued prayers. Quote Link to comment Share on other sites More sharing options...
jewellsmommy Posted July 1, 2011 Share Posted July 1, 2011 Some good news! Jonathan's CT scan this morning showed that the surgery on Wed. has been successful in decreasing the fluid in his ventricles! We are thankful for the first good news in 3 weeks. We are trying to be hopeful but have had to have some really difficult conversations with the doctors today about potentialities if the shunt doesn't continue to work (think hospice - and just so you know, people do not normally die from a shunt malfunction, but it is a very real possibility for our Jonathan. His case is a very unique case and I wouldn't want anyone to think this is the norm or be afraid if you know someone with a shunt. As a matter of fact, the doctors have never had a patient die from a shunt malfunction). My emotions are pretty spent and I don't know that I've processed all the info we got today. The doctors are checking the fluid for any infection and for the level of protein, and, if all is well, they will take him back to surgery tomorrow to internalize the shunt. We are cautiously optimistic that this will work, but know that he is still in the Lord's hands. Jonathan still has not woke up fully from all the sedation on the ventilator which was removed this morning with no problems after his CT scan. I really would love for him to be awake before he has to go under again, but that is just the mom in me. Thanks again for all the kind words, pm's, and prayers. They are still very much appreciated. So thankful for our little ray of hope today, Penny Glad to read some good news. We will continue to pray for Jonathan! :001_smile: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted July 1, 2011 Author Share Posted July 1, 2011 Penny, I'm glad for the small ray of hope. I'm so sorry that there is even the possibility of hospice. :grouphug::grouphug::grouphug: Thank you, Jean. I know. I have been overwhelmed by even the possibility. Tears have flowed. That is one of the reasons that the post by wy kid wrangler last week really hit home. I don't know if I can link it, but I'll try: http://www.welltrainedmind.com/forums/showthread.php?t=286044 . We all need to be reminded to hold those we love close. We just don't know how long we may have. I appreciated her post very much. Thanks, Penny Quote Link to comment Share on other sites More sharing options...
bzymom Posted July 1, 2011 Share Posted July 1, 2011 Every little bit of good news is so wonderful to read! Please know I am keeping your sweet guy in my prayers.:grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted July 1, 2011 Share Posted July 1, 2011 Penny, praying for a good outcome and His abundant peace! Quote Link to comment Share on other sites More sharing options...
AmeliaBinMO Posted July 1, 2011 Share Posted July 1, 2011 You've got my prayers! Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted July 1, 2011 Share Posted July 1, 2011 Tons of hugs and prayers Penny!!!!! :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Tree House Academy Posted July 1, 2011 Share Posted July 1, 2011 Holding you and your precious son in my prayers. May God hold you all in the palm of His mighty hand during these tough times. Quote Link to comment Share on other sites More sharing options...
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