Thursday, April 21, 2016

April 21, 2016- 10 Days Until Surgery

So we went to see the Sam's neurosurgeon today about her surgeries she will be having. I know it has been a while since I posted on the blog so let me catch you up. We prayed all December and January about going forward with a new procedure. Basically they will implant Stereo EEG electrodes in her brain to get a better picture of exactly where the seizures are coming from. Sam was averaging two tonic clonic seizures a month from January of 2015- October of 2015. Right now she is averaging one every 4 days. They are building in strength because she is getting immune to the medicines. If we don't do something soon we are going to most likely be looking at seizures that are out of control once again very soon. So these electrodes will tell us if we have one or two spots in the brain that the majority of her seizures are coming from so we can remove those sections of the brain. Yes, it is a little scary to think about doing this with our 5 year old daughter. So this is what we found out today...
- Because of her shunts and the possibility of infections, we are going to shave her whole head. He was going to do all but about an inch from her forehead. We decided to just let it all go. 
- They will be putting in at least 9 screws into her skull that will hold the electrodes. There is a good chance there will be more. He will decide when they get the MRI results that she takes next week. This will be painful and there will be minor swelling. :( 

- It will take at least 6 hours in the OR. He said she will most likely be his only patient that day. 
- We will go right to the Epilepsy Monitoring Unit that night to begin getting her hooked up for monitoring.  
- When they locate the spots, they will see what they think will be effected by taking that section out. There is not any guarantees about it not causing damage to some kind of function for her. The sections they are watching close deal with vision and motor function. 
- If they take a section out, we will be in the hospital at least 5 more days, if not longer. 
- If we decide that it isn't smart to remove those sections, we look at putting in a VNS. 
- The things that have him worried are that she has two shunts that are out at a risk for infection, we are opening the brain up for chances of infection, she has multiple spots that start seizures in her brain. She will be on antibiotics during her stay. 

We are stressed about it but her life at the current time is stressful because she is living in constant fear. We are in constant fear and worry because her seizures are just getting worse quickly. Please pray with us that all these unknowns have the best possible outcomes and Sam can come away from all of this stronger. That she can live her life without being constantly afraid. It is going to be a long haul with a dog, and a 5 year old in a small room for weeks, but at least we had a little time to plan. Thanking God for doctors we trust, friends who pray and for what we have today, because none of us are promised tomorrow. 

12 comments:

  1. We will be praying constantly for your sweet baby.

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Prayers are being prayed and will continue for Sammie and each of you.

    ReplyDelete
  4. Praying for all of you! I pray that you will get some help!

    ReplyDelete
  5. I am praying for you all! God is good and has a plan. Love you!!!

    ReplyDelete
  6. Love you guys. Praying for peace for y'all and wisdom and strength for the surgeons. ❤️

    ReplyDelete
  7. Much love and many prayers for Sam and for you all. Always!

    ReplyDelete
  8. There is nothing easy when it comes to the seizure monster. Love and prayers to you, your sweet girl, and all of your family.

    ReplyDelete
  9. I know this is a controversial method, but it has been proven many times over to work. Have you considered cannabis oil? It does not get your lo "high" in any way. I encourage you to research it if you haven't already. Prayers to your lo and your family.

    ReplyDelete
  10. You and your family are constantly in my prayers and I hope that this is the answer the end of seizures. I know we all want Sam to not be afraid and the scary spiders to go away.

    ReplyDelete
  11. The Texas Pomponios will be praying,
    God's presence and love will be there
    David and Debbie

    ReplyDelete
  12. Love this precious girl very much.She has been a blessing to all of us and God knows what He is doing with her and I will be praying that the right decision will be made for Sam,so let God be your guide.Such a sweetheart.

    ReplyDelete