Seizure at 8:10am followed by the most draining day of my life.
Well we wanted to capture a seizure while we were here, that was our main goal and we did it! Owen woke up around 7:30 and we knew right away we were going to get one this morning, you can just tell. So at 8:05 we started seeing the first signs of it and let the nurses know to get ready that it was coming. At 8:09 his eye and mouth started twitching, we pressed the alarm button to sound the alarm which sends in all the nurses from the floor, turns on bright lights in your room and alerts the neurologist on the floor. Yesterday I broke down while they were moving leads on Owen's head and Jamie had to be the one to talk him through but today was my day to be there for Owen. As Jamie sat at the foot of the bed in all the chaos of the seizure with tears in his eyes and he shakely told the nurses how his seizures usually progress at home, he couldn't pull himself together but we always cover for each other. Yesterday I was weak but he was strong and today when Jamie was crumbling I was there for Owen while he was seizing.... sitting right next to him, holding him, smiling, reassuring him he was okay, telling him how much we loved him, how proud of him we were, how brave he was, how he was going to be okay. The seizure lasted over 40 minutes and took three rounds of rescue medicine to stop it. It was a much more severe seizure than we have seen lately, most likely because he had no medication in his system. The last round of rescue medicine blew his IV so his entire arm swelled up SO bad, still is swollen now so they had to start another IV which they had to do in his LEFT hand, which is his dominant hand. We could barely physically restrain him enough for them to even get it in. Then they were able to get the remaining medicine in him and the seizure finally stopped.
In the midst of it all his neurologist came into the room to watch the seizure as well. It's so terrible seeing your child go through something like this, I can't even type it, it's too painful to even try to explain.
Then the rest of the day was just TERRIBLE and I mean TERRIBLE! We have had some really bad days, Owen being diagnosed with a brain bleed in the NICU, Owen's first seizure where he stopped breathing and had to be intubated, my brain tumor.... but this takes the cake for the most exhausting both physically and emotionally. Owen was SO drugged up and already SO sleep deprived that it was just not good. He was SO out of it. He can barely hold his head up on his own, is drooling constantly out of the right side of his mouth, has a right arm that is so swollen he can't move it at all, his left hand (his dominant hand) now has the huge IV so he can barely use that, it was just not a good combination. He would be fine for one minute watching a movie or playing the iPad but then would freak out over the littlest of things. The tv speaker fell off the pillow, his sock turned a little bit on his foot, a nurse walked into the room and he would lose it like I have never seen before. It took everything Jamie and I had just to restrain him in the bed to keep him safe.
We knew he needed sleep so badly but he would not close his eyes. By the afternoon he was delirious. He flipped out, screaming and kicking pointing at a corner of the room saying that his toy gun from grandpa was there. He was just pointing to a curtain and we tried explaining to him that it wasn't there, it was in his room at home but Owen insisted on getting out of bed to see it. We couldn't even keep him in the bed so Jamie carried him, Owen thought he was walking but wasn't even moving his feet so Jamie was literally kind of dragging his feet along the floor to where Owen was pointing, when we got to the spot Owen realized the gun wasn't there and kicked and screamed and pointed to another area that we went to and this continued on for about 15 minutes. I have never seen anything like it. Our day consisted of this kind of stuff, we kind of took turns, one of us gathered strength and patience and tried to help Owen through it while the other one of us stood at the window, cried and tried to regroup and then we switched. All I wanted to do was pick him up and rock and sway with him until he fell asleep and it just made me angry that I couldn't because he is too big and too strong for that and because I still can't lift because of my stupid tumor.
It was total survival mode today like we have never been in before and trust me, we have been in survival mode a time or two already. Owen HATES his IV and is constantly trying to rip it off, he now frantically tries to rip his net hat off too so much of our day was spent literally restraining his hands so he didn't mess with either of those things.
He never ended up napping, at 6:15 we started bedtime routine. He finally passed out around 7:45. Tonight was hands down the hardest hour and a half of my life. I have NEVER seen Owen like this and I hope to NEVER see it again. The poor kid was screaming, kicking, hiting, scratching, trying to rip his IV out, trying to rip his hat off. He was talking to us but his speech is so bad because the right side of his face is still paralyzed from the seizure so we couldn't understand what he was saying which was making him more mad. Jamie and I ended up having to physically restrain him while we both sobbed for about 30 minutes. I am talking putting Owen on his back, I had his arms pinned across his chest, Jamie had his legs pinned down and Owen just screamed and thrashed his head back and forth for 30 minutes and then he finally stopped, rolled to his side and went to sleep. He hasn't moved since. I however, got up, went to the bathroom and sobbed, like a real ugly sob that still has my head pounding. I came out of the bathroom to find Jamie sitting on a chair next to the bed sobbing too. I sat on Jamie's lap and we hugged and sat in silence and cried together. It was a LONG day.
They were hoping to get an MRI done today or tomorrow but after seeing Owen today decided that he is DONE and they will do this through out patient in the future. The neurologist said the seizure was all coming from the exact same small area of brain that all the other discharges were coming from! GREAT NEWS! He is a PERFECT candidate for brain surgery. Feels funny to be cheering for that but YAY! The area that they would be removing is responsible for memory and emotions and they are pretty sure that has already rerouted to somewhere else but they will do more testing on that. Since they learned there is such a small, localized area of his brain that is causing the seizures they are switching his daily seizure medication to something that should be more effective for him so hopefully we will be seizure free until he has the surgery. The bummer is that we will have a good two or three weeks of him adjusting to this new medicine that will make him really drowsy, dizzy and can cause all sorts of other reactions. Plus they have to slowly increase his dosage of the new medicine over a week and a half so for the next week and a half he will slowly get more of more of this new medicine into his system PLUS he will get a second medicine daily to make sure he is covered. This second medicine also has a whole long list of side effects to deal with. Hopefully he will be adjusted and back to normal within the next two weeks because then I start radiation and will be feeling like garbage myself. I just feel so bad for him! The good news is that IF his medicine levels are okay tomorrow morning we will be going home tomorrow afternoon! I can't WAIT to get home! I am not looking forward to the blood draw in the morning and not looking forward to the next few days as he adjusts to his meds and gets his strength back. The seizures take so much out of him. He will most likely still have problems walking and talking tomorrow but at least we will be in the comfort of our own house.
So we hopefully head home tomorrow with a game plan. We start my radiation February 3rd and my last treatment will be March 14th. Then as soon as my strength is back we will be want to do the surgery for Owen and when that is over we will hopefully get the results that my radiation treatment went amazingly well or else we will then be immediately starting chemo for me but I am not even letting my mind go there because I know the radiation is going to kick the shit out of this brain tumor, we don't have time for this non sense when we have so much to do for Owen.
AND... also today, I just really missed Jacob. I wonder if he missed me too. Here is a photo my mom sent. He's in Owen's Hulk hat and gloves. I have never been away from him for 24 hours before this and I haven't seen him since Tuesday morning. :(
So there you have it... my day in a nutshell. I hope to read this back in 20 years and think, man that WAS a terrible day but look how happy we all are now!
So send over some happy vibes, we need them today!
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