Tuba is done with his in hospital EEG Study. I've let a couple of days pass so that I could compose my thoughts.
For back history you can read more HERE about Tuba's past EEGs and his medical history.
At our recent visit to the neurologist she and I talked about some small "jerk" like motions that Tuba has. I have always thought they were seizures but the Dr. wanted to make sure. They could also be caused by Tuba's brain injury.
***Tuba has an anoxic brain injury. Basically his brain suffered lack of oxygen at some point in utero. Technically it could have been in utero, during birth or even as an infant. But, I know that his eyes showed signs from birth. Tuba's birth was normal and there are no standout reasons to think the injury happened during his birth....of course it could be but we don't know. In utero many different things could have caused this....an infection, a virus, the cord, an accident. I never had a fever while pregnant...I did have a bad cold. Other than that it was a healthy normal pregnancy. It's one of those "we will probably never know".
We actually used to think he had a brain malformation. That is what we were told after an MRI when he was an infant. He had a new MRI last year and the imaging data now is so much better. It was kind of a shock to get this new info. But, in the end it doesn't change anything about Tuba. Whether his brain malformed or it was damaged doesn't change who he is or how to treat his seizures.
Okay, back to the little "jerks" and the EEG. The Dr. wanted Tuba to come in hospital for a 5 day EEG. 5 days!!!!!! Since we had done a monitored EEG before I knew what to expect. I knew that we would have to be at the hospital with him the whole time. That means "divide and conquer"...that's what Cam and I call it when we split up the duties. But, Cam has to work....so....I knew we would need HELP!! I called in the Grandparents and friends.
It took some planning to set up help for 5 days. I would need to leave the house each morning at 5:30 a.m. to get to the hospital in time for Cam to go to work. Cam would spend the nights with Tuba.
Day 1: Last Monday Tuba checked in. Cam took Monday off work....in exchange for working Saturday. I took Tuba down in the morning. For the study he had to get leads glued to his head. Not normal EEG glue....it was some kind of nasty, stinky super glue. First they marked his head with red pencil then glued the leads and hen they dried it with an air gun. He HATED it!! It was so sad. He kept saying owie!! Super sad!
Cam came down on his motorcycle and I left to go home and pick up kids from school. Tuba settled into his room. He had to stay in the bed because the EEG is video and sound recorded too and that is where the camera is pointed. If the patient has a seizure you have to push a button that will time stamp the EEG feed. He could go to the bathroom...the EEG machine had a very long cord.
Day 2: Tuesday I got up early....4:30 a.m. What the heck!! Who gets up at that time?! Horrible terrible time to get out of bed. I kept Mr. P out of school so he could come see Tuba and also so I could have a carpool partner!
Tuba was.....a bit crabby....like a rattlesnake when we arrived. Yikes. Apparently sleeping with 29 electrodes on your head makes it hard to sleep. The EEG tech had to come and re-attach some of his leads. Oh joy! Not! He was miffed to say the least. While she was re-attaching the leads I saw him have a "jerk". I pushed the button and recorded what I saw.
When the Dr. came in on rounds that day she said she looked at the EEG and did not see a seizure. I was excited. Maybe those jerks weren't seizures. Maybe he could go off of some of his meds. She did say that his brain has lots of abnormal firing. We knew this from the EEG he had two years ago. So no surprise there. The firing happens on the left side of his brain and the temporal lobe.
Later that same day he and I were laying together on his bed having a nap. I NEVER nap unless I'm horribly sick or pregnant. I was neither of those things...apparently waking up at 4:30 a.m. makes me tired. Anyway, while napping with Tuba I felt a big jerk from him. I pushed the button and recorded notes on what I felt.
Day 3: On the next day he was a bit happier. I brought Moses with me. By now Tuba was really liking laying in bed all day. Can you say "lazy teenager"? Meals delivered on trays and all kinds of special attention. I started calling him Prince Tuba. He was REALLY milking the whole thing. He would have me straighten his blanket out and fix his pillow. Hilarious.
Again I saw another jerk and recorded it. When the Dr. came on rounds she told me that yes he was in fact having seizures. All of the times I pushed the button he did have a Myoclonic seizure. Plus he had one while he was sleeping during the night.
Ugh! I was so sad! I was bummed. The Dr. suggested upping his medication but I pleaded for an increase to his VNS instead. We have had WAY better success with the VNS than with meds. He had the VNS adjusted so we will see. We have to report back in one month.
We got discharged too! They had gotten the data that was needed. Thankfully we didn't have to stay 2 more days. We were all tired and DONE! Poor Cam was so tired from sleeping in a fold out chair and then going to work. I was tired from all the early mornings and late nights getting kids ready for bed. Plus the stress....and the traffic....oh!
Tuba was so happy (although it was painful) to get the junk off his head. When we left the hospital he waved at everyone on the street. He was ecstatic!
Overall the whole things went great! The kids were well cared for....actually they LOVED having different people coming every day. It was like Christmas! Tuba did great too. He was a real trooper. Cam is Superman! Seriously! After work on day 3 when he got home he mowed the lawn. The man has so much energy!
Me....I was fine too. Well actually a little...or a lot not okay. I'll write more tomorrow about that.
At our recent visit to the neurologist she and I talked about some small "jerk" like motions that Tuba has. I have always thought they were seizures but the Dr. wanted to make sure. They could also be caused by Tuba's brain injury.
***Tuba has an anoxic brain injury. Basically his brain suffered lack of oxygen at some point in utero. Technically it could have been in utero, during birth or even as an infant. But, I know that his eyes showed signs from birth. Tuba's birth was normal and there are no standout reasons to think the injury happened during his birth....of course it could be but we don't know. In utero many different things could have caused this....an infection, a virus, the cord, an accident. I never had a fever while pregnant...I did have a bad cold. Other than that it was a healthy normal pregnancy. It's one of those "we will probably never know".
We actually used to think he had a brain malformation. That is what we were told after an MRI when he was an infant. He had a new MRI last year and the imaging data now is so much better. It was kind of a shock to get this new info. But, in the end it doesn't change anything about Tuba. Whether his brain malformed or it was damaged doesn't change who he is or how to treat his seizures.
Okay, back to the little "jerks" and the EEG. The Dr. wanted Tuba to come in hospital for a 5 day EEG. 5 days!!!!!! Since we had done a monitored EEG before I knew what to expect. I knew that we would have to be at the hospital with him the whole time. That means "divide and conquer"...that's what Cam and I call it when we split up the duties. But, Cam has to work....so....I knew we would need HELP!! I called in the Grandparents and friends.
It took some planning to set up help for 5 days. I would need to leave the house each morning at 5:30 a.m. to get to the hospital in time for Cam to go to work. Cam would spend the nights with Tuba.
Day 1: Last Monday Tuba checked in. Cam took Monday off work....in exchange for working Saturday. I took Tuba down in the morning. For the study he had to get leads glued to his head. Not normal EEG glue....it was some kind of nasty, stinky super glue. First they marked his head with red pencil then glued the leads and hen they dried it with an air gun. He HATED it!! It was so sad. He kept saying owie!! Super sad!
Cam came down on his motorcycle and I left to go home and pick up kids from school. Tuba settled into his room. He had to stay in the bed because the EEG is video and sound recorded too and that is where the camera is pointed. If the patient has a seizure you have to push a button that will time stamp the EEG feed. He could go to the bathroom...the EEG machine had a very long cord.
Day 2: Tuesday I got up early....4:30 a.m. What the heck!! Who gets up at that time?! Horrible terrible time to get out of bed. I kept Mr. P out of school so he could come see Tuba and also so I could have a carpool partner!
Tuba was.....a bit crabby....like a rattlesnake when we arrived. Yikes. Apparently sleeping with 29 electrodes on your head makes it hard to sleep. The EEG tech had to come and re-attach some of his leads. Oh joy! Not! He was miffed to say the least. While she was re-attaching the leads I saw him have a "jerk". I pushed the button and recorded what I saw.
When the Dr. came in on rounds that day she said she looked at the EEG and did not see a seizure. I was excited. Maybe those jerks weren't seizures. Maybe he could go off of some of his meds. She did say that his brain has lots of abnormal firing. We knew this from the EEG he had two years ago. So no surprise there. The firing happens on the left side of his brain and the temporal lobe.
Later that same day he and I were laying together on his bed having a nap. I NEVER nap unless I'm horribly sick or pregnant. I was neither of those things...apparently waking up at 4:30 a.m. makes me tired. Anyway, while napping with Tuba I felt a big jerk from him. I pushed the button and recorded notes on what I felt.
Day 3: On the next day he was a bit happier. I brought Moses with me. By now Tuba was really liking laying in bed all day. Can you say "lazy teenager"? Meals delivered on trays and all kinds of special attention. I started calling him Prince Tuba. He was REALLY milking the whole thing. He would have me straighten his blanket out and fix his pillow. Hilarious.
Again I saw another jerk and recorded it. When the Dr. came on rounds she told me that yes he was in fact having seizures. All of the times I pushed the button he did have a Myoclonic seizure. Plus he had one while he was sleeping during the night.
Ugh! I was so sad! I was bummed. The Dr. suggested upping his medication but I pleaded for an increase to his VNS instead. We have had WAY better success with the VNS than with meds. He had the VNS adjusted so we will see. We have to report back in one month.
We got discharged too! They had gotten the data that was needed. Thankfully we didn't have to stay 2 more days. We were all tired and DONE! Poor Cam was so tired from sleeping in a fold out chair and then going to work. I was tired from all the early mornings and late nights getting kids ready for bed. Plus the stress....and the traffic....oh!
Tuba was so happy (although it was painful) to get the junk off his head. When we left the hospital he waved at everyone on the street. He was ecstatic!
Overall the whole things went great! The kids were well cared for....actually they LOVED having different people coming every day. It was like Christmas! Tuba did great too. He was a real trooper. Cam is Superman! Seriously! After work on day 3 when he got home he mowed the lawn. The man has so much energy!
Me....I was fine too. Well actually a little...or a lot not okay. I'll write more tomorrow about that.
Thank you for sharing your story. My heart goes out to you. I remember cringing at the thought of upping the meds, too. VNS helped one of our children so very much. I look forward to the next post. You are a beautiful and wonderful Mama!
ReplyDeleteI agree with Deborah, you are a beautiful and wonderful Mama! And Cam a handsome and wonderful Father! I will keep Tuba in my prayers ...well, all of you.
ReplyDeleteLove you
Mom