We went back to Chapel Hill today to meet with the neurosurgeon and the epileptologist. The neurosurgeon was great. He was very informative about the surgery if it turns out that Cutter is a good candidate. Unfortunately, it is not just up to him if Cutter is a candidate or not. There is a whole epilepsy team that consists of the neurosurgeon, the neurologist, two epileptologists, the radiologist and the neurosurgeon's assistant. They are going to meet next week to discuss Cutter's case and decide if surgery is the best way to go.
We met with the epileptologist also, and it didn't go as well. She said that she is not 100% certain that Cutter's seizures are coming from one spot, like we have been told in the past. If this is the case then Cutter might not be able to have surgery. It all depends on what the other epileptologist and the radiologist think about the EEG and MRI. We are crossing our fingers that something just wasn't read right. However, she is only one person on the epilepsy team. Everyone else will have to weigh in on the decision.
It is all in God's hands, and hopefully, a decision will finally be made next Thursday. Please, please keep praying! We greatly appreciate it!
Thursday, June 23, 2011
Tuesday, June 21, 2011
Home...for a bit, anyway!
Hello!
Well, we got home on Sunday evening, and everything is going okay. Cutter continues to have several seizures a day, ranging from 10-25. He is tolerating his new medication well, so that is a plus! We will be going back to Chapel Hill on Thursday for an appt. with Dr. Perry, his neurosurgeon, and Dr. Elkay, his epileptologist. They will hopefully be making a decision about whether or not Cutter is a candidate for surgery. We will keep you posted!
On another note, Cutter had his first haircut today. It was quite traumatic! I will share some pictures with you!
Thank you for your prayers! :)
Well, we got home on Sunday evening, and everything is going okay. Cutter continues to have several seizures a day, ranging from 10-25. He is tolerating his new medication well, so that is a plus! We will be going back to Chapel Hill on Thursday for an appt. with Dr. Perry, his neurosurgeon, and Dr. Elkay, his epileptologist. They will hopefully be making a decision about whether or not Cutter is a candidate for surgery. We will keep you posted!
On another note, Cutter had his first haircut today. It was quite traumatic! I will share some pictures with you!
Thank you for your prayers! :)
Saturday, June 18, 2011
Day 4
Yesterday evening we learned that Cutter's MRI is still the same as it was when he was little. There are no new spots. We also learned today the information from his EEG shows that Cutter is still having seizures from the right frontal part of his brain, where he has been having them all the time. So, there are no new developments with his seizures. Praise the Lord!
So, the plan now is to add Phenytoin (Dilantin) to Cutter's current medications of Keppra, Zonegran and B6. The Phenytoin seems to be doing a good job right now of controlling Cutter's seizures. Yesterday he had 71. Today he has only had 14. They took the EEG leads off of Cutter's head today, a process that was not NEARLY as long as it was to get them off. Of course, he still screamed and cried, but it didn't last but about fifteen minutes. Now, the glue is stuck to his head, and it will be FOREVER until it comes off! But that is the least of our concerns!
We thought we were going to get to go home this evening but no such luck. No pharmacy around has Cutter's new medication, and our pharmacy at home said that they have not carried it in about ten years! So, we have to wait until the morning and get the prescription filled at the hospital pharmacy.
We will be home tomorrow and cannot wait! We are supposed to come back on Wednesday for an appt. with Cutter's neurosurgeon. He will meet with the epilepsy team here at UNC CH, and they will decide if Cutter is a candidate for surgery.
God has opened this door wide, and everything is working out well! I am reminded of a song: "God is in control. We believe that His children will not be forsaken." God has definitely not forsaken us and is taking very good care of us.
Thank you for your prayers! :) Hopefully we will update tomorrow!
So, the plan now is to add Phenytoin (Dilantin) to Cutter's current medications of Keppra, Zonegran and B6. The Phenytoin seems to be doing a good job right now of controlling Cutter's seizures. Yesterday he had 71. Today he has only had 14. They took the EEG leads off of Cutter's head today, a process that was not NEARLY as long as it was to get them off. Of course, he still screamed and cried, but it didn't last but about fifteen minutes. Now, the glue is stuck to his head, and it will be FOREVER until it comes off! But that is the least of our concerns!
We thought we were going to get to go home this evening but no such luck. No pharmacy around has Cutter's new medication, and our pharmacy at home said that they have not carried it in about ten years! So, we have to wait until the morning and get the prescription filled at the hospital pharmacy.
We will be home tomorrow and cannot wait! We are supposed to come back on Wednesday for an appt. with Cutter's neurosurgeon. He will meet with the epilepsy team here at UNC CH, and they will decide if Cutter is a candidate for surgery.
God has opened this door wide, and everything is working out well! I am reminded of a song: "God is in control. We believe that His children will not be forsaken." God has definitely not forsaken us and is taking very good care of us.
Thank you for your prayers! :) Hopefully we will update tomorrow!
Friday, June 17, 2011
Day 3
Today's events started early. At 8:00 the pediatric sedation team came to see Cutter and get his IV ready for sedation for the MRI and PET CT SCAN. Getting the IV in was HORRIBLE. His veins were not cooperating because he was not very hydrated. He couldn't have anything to drink or eat after midnight. (He did really good with that!) After poking him in the left arm, the right hand, and the right foot (twice) the IV finally took. They gave him an oral medication to make him "happy" before they sedated him. He was so funny during this time. He kept interrupting the sedation team and telling them "Hey!"
Then they took him down to the PET scan area. A PET CT scan is different than a regular CT SCAN because it look's at the brain's functions and not the anatomy. He had to have 45 minutes of quiet time before they sedated him. When they went to sedate him the IV no longer worked because it got kinked so they ended up putting the IV in his left foot. Mommy had to leave the room because of the new baby and the dangers of the radiation from the sedation. Mommy also can't be around Cutter for 24 hours. Boo. She can be in the room but can't touch him. After sedation Cutter had the PET CT SCAN. This lasted about 30 minutes. We then walked to the MRI station and he had an MRI that lasted about 45 minutes. He did really good during both procedures and came out of sedation quickly and easily.
We finally got back to the room somewhere close to 1:30. Cutter had not yet had his morning medications. We had no idea that we would be gone that long. He got his medications along with Fosphenytoin, which is a good anticonvulsant drug to stop seizures. He was given that through his IV. After that we headed down to the EEG room to have the electrodes put on his head for monitoring. Talk about a traumatic experience. It took about two hours, and he screamed and cried the entire time. He tried so hard to be brave. After it was over he politely told the tech "bye, bye!" He was certainly ready to come back upstairs.
When we got back upstairs Cutter fell asleep. He took a good nap and seems to be feeling good. His head is all wrapped in a turban and makes him a little top heavy at times. All day long he has had over sixty seizures. Hopefully, the Fosphenytoin will kick in soon, and the seizures will stop!
We will keep you updated! We feel the prayers! Thank you!
Then they took him down to the PET scan area. A PET CT scan is different than a regular CT SCAN because it look's at the brain's functions and not the anatomy. He had to have 45 minutes of quiet time before they sedated him. When they went to sedate him the IV no longer worked because it got kinked so they ended up putting the IV in his left foot. Mommy had to leave the room because of the new baby and the dangers of the radiation from the sedation. Mommy also can't be around Cutter for 24 hours. Boo. She can be in the room but can't touch him. After sedation Cutter had the PET CT SCAN. This lasted about 30 minutes. We then walked to the MRI station and he had an MRI that lasted about 45 minutes. He did really good during both procedures and came out of sedation quickly and easily.
We finally got back to the room somewhere close to 1:30. Cutter had not yet had his morning medications. We had no idea that we would be gone that long. He got his medications along with Fosphenytoin, which is a good anticonvulsant drug to stop seizures. He was given that through his IV. After that we headed down to the EEG room to have the electrodes put on his head for monitoring. Talk about a traumatic experience. It took about two hours, and he screamed and cried the entire time. He tried so hard to be brave. After it was over he politely told the tech "bye, bye!" He was certainly ready to come back upstairs.
When we got back upstairs Cutter fell asleep. He took a good nap and seems to be feeling good. His head is all wrapped in a turban and makes him a little top heavy at times. All day long he has had over sixty seizures. Hopefully, the Fosphenytoin will kick in soon, and the seizures will stop!
We will keep you updated! We feel the prayers! Thank you!
Thursday, June 16, 2011
Day 2 Cont.
Whew. It's been a whirlwind of a day. We have seen several doctors, all of whom have had a different opinion. We finally got to talk to the neurosurgeon assistant, and she was very helpful. She was able to answer a lot of our surgery questions, and seems confident that if surgery is the route we choose to go then it will go well. The plan for now is that Cutter will have an MRI tomorrow and after that will be hooked up for an EEG. We don't know if it will be a 24 hour or 48 hour EEG. We are still not sure when we will be going home, but that does not matter right now. Cutter is still having many seizures, and this will continue until after his monitoring and imaging is complete. Then they will do something to try to control his seizures. This is so they can get a good idea of what his seizures look like and know exactly where they are coming from.
He has enjoyed his day playing with the many toys they have available. He has watched movies and listened to songs, and received a couple of presents from some of the hospital staff. He is spoiled rotten!
Thank you for your continued prayers. God is good! We know we are here for a reason. We will update tomorrow.
He has enjoyed his day playing with the many toys they have available. He has watched movies and listened to songs, and received a couple of presents from some of the hospital staff. He is spoiled rotten!
Thank you for your continued prayers. God is good! We know we are here for a reason. We will update tomorrow.
Chapel Hill...Again
Hello Friends,
Here is an update from last week: Cutter had over 200 seizures from June 5 to June 12. We talked with Dr. H. several times last week and decided to go ahead and try to make an appt. with the neurosurgeon at UNC Chapel Hill. We called on Thursday and were able to get in touch with Dr. Perry's secretary. They were going to go ahead and try to set things up for an EEG and an MRI. We didn't hear back from them before Wednesday. Monday, Tuesday and Wednesday were all very rough days for Cutter. He had lots of seizures, and they started to get harder. Dr. Huffstutter wanted us to get in touch with Chapel Hill and try to get Cutter admitted. After many phone calls and talking to many different people and waiting, waiting, waiting....they called us back and said they had a room ready for Cutter. Yay! So, yesterday we left for Chapel Hill and arrived at 7:00.
Cutter only had one seizure from 7:00 last night until 8:00 this morning. He has had a few today, and the doctors are working on a plan. He will have an MRI and an EEG at some point, but we are still waiting on those plans to be made.
Cutter slept great last night, right between us on a fold-out couch. :) He is thoroughly enjoying all of the many toys here and is currently in a toddler playgroup.
We will post more as we know more. Thank you for your prayers!!!
Here is an update from last week: Cutter had over 200 seizures from June 5 to June 12. We talked with Dr. H. several times last week and decided to go ahead and try to make an appt. with the neurosurgeon at UNC Chapel Hill. We called on Thursday and were able to get in touch with Dr. Perry's secretary. They were going to go ahead and try to set things up for an EEG and an MRI. We didn't hear back from them before Wednesday. Monday, Tuesday and Wednesday were all very rough days for Cutter. He had lots of seizures, and they started to get harder. Dr. Huffstutter wanted us to get in touch with Chapel Hill and try to get Cutter admitted. After many phone calls and talking to many different people and waiting, waiting, waiting....they called us back and said they had a room ready for Cutter. Yay! So, yesterday we left for Chapel Hill and arrived at 7:00.
Cutter only had one seizure from 7:00 last night until 8:00 this morning. He has had a few today, and the doctors are working on a plan. He will have an MRI and an EEG at some point, but we are still waiting on those plans to be made.
Cutter slept great last night, right between us on a fold-out couch. :) He is thoroughly enjoying all of the many toys here and is currently in a toddler playgroup.
We will post more as we know more. Thank you for your prayers!!!
Tuesday, June 7, 2011
And Here We Go Again...
Hello,
It has been so long since we last posted because things had been going great for Cutter. He was having the occasional break through seizure, but other than that was doing very well. However, this started to change on Sunday. Cutter had eight seizures on Sunday. We haven't seen seizures like that in a long time. It hurt badly to see him start over again. We were both devastated. Then on Monday Cutter had 22 seizures altogether. The doctor has increased his Keppra again (it was just increased two weeks ago), and we now have another prescription for the Diastat, which is the "emergency" medicine that we can give him if his clusters of seizures prove to be too much for him.
Today has been slightly better. As of right now Cutter has had 17 seizures all day long. He has finally fallen asleep and will hopefully sleep well through the night. We hope to see an improvement tomorrow.
We know God is in control, and He is going to take care of our little boy. We just have to keep our faith and not lose sight of the fact that great things are to come for Cutter!
We thank you for your prayers and are continuing to ask for them! They are greatly needed!
It has been so long since we last posted because things had been going great for Cutter. He was having the occasional break through seizure, but other than that was doing very well. However, this started to change on Sunday. Cutter had eight seizures on Sunday. We haven't seen seizures like that in a long time. It hurt badly to see him start over again. We were both devastated. Then on Monday Cutter had 22 seizures altogether. The doctor has increased his Keppra again (it was just increased two weeks ago), and we now have another prescription for the Diastat, which is the "emergency" medicine that we can give him if his clusters of seizures prove to be too much for him.
Today has been slightly better. As of right now Cutter has had 17 seizures all day long. He has finally fallen asleep and will hopefully sleep well through the night. We hope to see an improvement tomorrow.
We know God is in control, and He is going to take care of our little boy. We just have to keep our faith and not lose sight of the fact that great things are to come for Cutter!
We thank you for your prayers and are continuing to ask for them! They are greatly needed!
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