Penny from Tenny Posted June 11, 2011 Share Posted June 11, 2011 (edited) Please see page 2 for an update and prayer request! I can't get the title to edit even going advanced. Our disabled son, Jonathan, has been "off" his normal for the last week or so. It wasn't anything much, but we suspected his shunt wasn't working right even though he had just had surgery the day after Easter which resulted in a 9 day hospital stay. So, he was scheduled on Friday to have outpatient dental surgery because his meds had caused his gums to grow over his back molars causing him to bite down on his gums everytime he would swallow, as well as getting a wisdom tooth cut out. He had had the first half done 2 months ago. Very painful and excessive bleeding. I told the nurse Thursday that if he didn't improve after the dental surgery, we would need to get his shunt checked. Well, he threw up Thursday night, which is a HUGE indicator that it was the shunt and so we canceled the dental surgery, got to the ER at 9:00 a.m. yesterday and had surgery to fix the shunt at 2:00! If he had had the dental surgery I don't know that we would have clued in to the shunt problems until too late because of the pain from the dental procedure and not being able to distinguish between the two. Shunts are very simple little devices, but when they go out you HAVE to get them fixed or you can die. So, I am just so thankful that Jonathan threw up on Thursday and not later. So, yeah, this is our newest daily reminder that God's purposes aren't always immediately recognizable but that he is ALWAYS at work. Just wanted to share....oh, and we are being discharged today! Thankfully, Penny Edited June 14, 2011 by Penny from Tenny Update Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted June 11, 2011 Share Posted June 11, 2011 His timing is perfect, isn't it? So glad your boy is ok. :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted June 11, 2011 Share Posted June 11, 2011 I'm glad that the problem was caught and fixed. Quote Link to comment Share on other sites More sharing options...
OLG Posted June 11, 2011 Share Posted June 11, 2011 Love it! Thanks for sharing. Quote Link to comment Share on other sites More sharing options...
J-rap Posted June 11, 2011 Share Posted June 11, 2011 His timing IS perfect. Unfortunately this is always easier for me to see in hindsight... So glad your son is okay. Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted June 11, 2011 Author Share Posted June 11, 2011 Thank you everyone - I hope I didn't sound gross in what I thanked God for, but it was a huge "key" in figuring out what was going on....and I do thank Him. We are home now....and pizza is for supper. Veggie for me-yum! 46 pounds down...plenty more to go! :D Quote Link to comment Share on other sites More sharing options...
Patches Posted June 12, 2011 Share Posted June 12, 2011 Thankful with you!:grouphug: Quote Link to comment Share on other sites More sharing options...
Jyniffrec Posted June 12, 2011 Share Posted June 12, 2011 Wonderful! Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted June 12, 2011 Share Posted June 12, 2011 I'm so glad things turned out the way they did. God is watching over him. :) Quote Link to comment Share on other sites More sharing options...
Heather in WI Posted June 12, 2011 Share Posted June 12, 2011 :grouphug: Wow! So glad that you caught it in time. :grouphug: Quote Link to comment Share on other sites More sharing options...
QueenCat Posted June 12, 2011 Share Posted June 12, 2011 Thank you everyone - I hope I didn't sound gross in what I thanked God for, but it was a huge "key" in figuring out what was going on....and I do thank Him. We are home now....and pizza is for supper. Veggie for me-yum! 46 pounds down...plenty more to go! :D Not gross... everytime ds gets a bad headache, I wait for the other signs, projectile vomiting being the first to hope for, if it's going to be the shunt. Thankfully, it hasn't been in years. Glad you got to the bottom of it quickly, and got the revision before it got worse. Quote Link to comment Share on other sites More sharing options...
LNC Posted June 12, 2011 Share Posted June 12, 2011 Thank you for sharing! God enables us to care for our special children! I'm reminded every day that it really is impossible in my own strength, but He gives strength, peace, joy and wisdom... Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted June 14, 2011 Author Share Posted June 14, 2011 After we got home from the hospital Saturday and had a little family time together Jonathan got sick again which is not normal after a shunt surgery. He continued through the night and we ended up back in the ER. His ventricles on his brain where as large or larger than they were before he had surgery on Friday. So, back to the OR on Sunday afternoon to have the shunt externalized (a new one on us after 26 years). He continued to be sick anytime we moved him; when he went for a CT, changing a dressing, etc. So, after a vomiting episode and nearly aspirating, they took him back to OR again this afternoon to fix the part that was determined to be the culprit in all this. He is already showing signs of recovering differently and more positively because of the fluid being reduced on the left side of the brain. They will continue to monitor him for a day or so and then take him back to OR to put the shunt back in where it had been externalized in order to drain and be monitored. I know this probably sounds complicated if you aren't familiar with shunts, but it is a new experience for us as well. Right now we have hopes that he should return to his normal within the next day or so. We are hoping that one more surgery should do it and that he will only be in for 4-5 more days. We are so thankful to live in Memphis where we have an excellent team of neuro-surgeons and for Lebonheur Children's Hospital where they have allowed us to be in spite of his physical age. I cannot express how wonderful everyone is here! His neuro-surgeon is the one who did his hemispherectomy back in September and who does the really difficult cases for St. Jude Hospital here in Memphis (and my spinal fusion I might add!). I have met people from all over the country who come here for the neuro care. We are just so blessed! We would appreciate any and all prayers for a full recovery! Thanks! We are anchoring deep, Penny Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted June 14, 2011 Share Posted June 14, 2011 After we got home from the hospital Saturday and had a little family time together Jonathan got sick again which is not normal after a shunt surgery. He continued through the night and we ended up back in the ER. His ventricles on his brain where as large or larger than they were before he had surgery on Friday. So, back to the OR on Sunday afternoon to have the shunt externalized (a new one on us after 26 years). He continued to be sick anytime we moved him; when he went for a CT, changing a dressing, etc. So, after a vomiting episode and nearly aspirating, they took him back to OR again this afternoon to fix the part that was determined to be the culprit in all this. He is already showing signs of recovering differently and more positively because of the fluid being reduced on the left side of the brain. They will continue to monitor him for a day or so and then take him back to OR to put the shunt back in where it had been externalized in order to drain and be monitored. I know this probably sounds complicated if you aren't familiar with shunts, but it is a new experience for us as well. Right now we have hopes that he should return to his normal within the next day or so. We are hoping that one more surgery should do it and that he will only be in for 4-5 more days. We are so thankful to live in Memphis where we have an excellent team of neuro-surgeons and for Lebonheur Children's Hospital where they have allowed us to be in spite of his physical age. I cannot express how wonderful everyone is here! His neuro-surgeon is the one who did his hemispherectomy back in September and who does the really difficult cases for St. Jude Hospital here in Memphis (and my spinal fusion I might add!). I have met people from all over the country who come here for the neuro care. We are just so blessed! We would appreciate any and all prayers for a full recovery! Thanks! We are anchoring deep, Penny Oh Penny! You and Jonathan have really been through the wringer. I'm glad that they seem to have found and fixed the problem. Praying for recovery. Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted June 14, 2011 Author Share Posted June 14, 2011 Unfortunately our son's demeanor in the recovery room did not continue. They were able to fix the left side of the shunt and now the CT scan indicates that the right side is not working and the ventricles are huge. We are heading back to surgery shortly. Jonathan is just so sick. We really would appreciate your prayers. I can't get my title to edit correctly so I don't know if folks will see the update part of my post. This is all very frustrating and exhausting, but I keep singing "Great is Thy Faithfulness....morning by morning new mercies I see." Anchoring deep, Penny Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted June 14, 2011 Share Posted June 14, 2011 Unfortunately our son's demeanor in the recovery room did not continue. They were able to fix the left side of the shunt and now the CT scan indicates that the right side is not working and the ventricles are huge. We are heading back to surgery shortly. Jonathan is just so sick. We really would appreciate your prayers. I can't get my title to edit correctly so I don't know if folks will see the update part of my post. This is all very frustrating and exhausting, but I keep singing "Great is Thy Faithfulness....morning by morning new mercies I see." Anchoring deep, Penny Continuing to pray, Penny. This sounds so serious. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Penny from Tenny Posted June 14, 2011 Author Share Posted June 14, 2011 (edited) Continuing to pray, Penny. This sounds so serious. :grouphug::grouphug::grouphug: It is. I am just numb. Thanks for praying. We are still waiting to go to surgery. There was one case before Jonathan that must be taking longer than expected. Edited June 14, 2011 by Penny from Tenny typo Quote Link to comment Share on other sites More sharing options...
mommyto4 Posted June 14, 2011 Share Posted June 14, 2011 :grouphug: Praying for you and Jonathan. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted June 14, 2011 Share Posted June 14, 2011 Will be praying for your son. I have a special needs son also, although he is only 11. I can only imagine what you all are and have gone through. Keep us posted! God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
Muninay Posted June 15, 2011 Share Posted June 15, 2011 Praying...oldest ds was born with congenital heart disease had 2 surgeries one at 3 days old then at 4 months old. He's 14 now and one more procedure to go. Hang in there, Trust in Jesus, and submit to His will. Much Blessings, Muninay Quote Link to comment Share on other sites More sharing options...
lollie010 Posted June 15, 2011 Share Posted June 15, 2011 So sorry. Praying for Jonathan and the whole family. Quote Link to comment Share on other sites More sharing options...
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