Monday, June 10, 2013

Seizures and Laughing and Neurological Changes

The tittle pretty much sums up the life we are living RIGHT this second. The last week has been HARD to say the least. I haven't cried this much for a year and a half. So here is the update/info that everyone has been looking for.

Tuesday during the day, Ty had been stuttering SO badly that I thought I was going to go insane. He couldn't get anything out with us stopping him and by the end of the day I had about lost my marbles. It was our Anniversary and we couldn't go out this year, so I was extra crabby and ready for D to be home.

I couldn't all asleep despite all attempts to do so and was up just chilling online when I keep hearing Tyler hitting the wall. My biggest fear is to walk in and see him in a grand mal like before so I was not expecting what I did.

Ty was not in his bed. He doesn't sleep with a nightlight so the hall light was on so I could see him when I went in. He had gotten out of bed, gone over to his shelves that have all his Mickey mouses on it and had gotten one down. He was on the floor.  I picked him up to get him into his bed and he went limp. I laid him down on the bed and tried to get him to talk to me. Instead he just started laughing. Full on BELLY LAUGHING. I couldn't help but join him, but kept trying to get him to tell me what was so funny. He would just stare at me and laugh.

After a few minutes he stopped and said " Hey, what are you doing in my room." Thought nothing of it and headed in to try and go to sleep. A few minutes later thought, I better check again. There he was wide awake, staring right at me but not responding.

When he did respond, it was pretty quick and he said " mom, I said go to bed and don't let the bed bugs bite your bum or belly!" Just a typical Ty answer EVERY night.

I went back to the room and fell right to sleep.

Next day, not a stutter. I met up with a friend and Ty could not handle the grocery store. We had some serious meltdowns after the store and G and I just left him alone the rest of the day. But not one stutter.

I had felt funny about the laughing so I googled and asked a few questions. Decided to call the Neurologist.  Got nothing. So I called our pediatrician and his nurse was worried and sent us in. Our ped is awesome, but some day I am just going to make him pay me. ( just kidding) And he said he was definitely acting not Tyler. And said keep trying the neurologist.

Thursday rolls around. The stuttering is back so badly that he can't remember simple words. He would just sit there and try to get a word out and it wouldn't come. Finally D got the brilliant Idea to have him spell. And he could spell words but not say them. Hardest to  come up with C-A-N. And B-U-T the W words were hard to get out but he could do it but the other ones he just couldn't find them. At one point he would give up and say, I am sorry mom/dad I can't remember the words. And walk away.

I spend Thursday night bawling because seizure suck and I am sad. Friday, the spelling continues and the sensory overload towards his brother is intense. I call the Pediatrician and they were going to put me into a message line and I FREAK OUT and start bawling. The nurse gets on and she says she will get a hold of the Neuro. She called back and said they wanted us in the ER because the neuro was on call. She couldn't get us in to see her otherwise until August and they were concerned.

We make a few pit stops before we headed to the hospital. Thank goodness we did.

We into the ER after watching a Car BBQ on the freeway. And got into a room pretty quick. It took an hour for a doc to walk in. After that he got some info, left and we saw him again 4 hours later. All he said 4 hours later was " Neuro and neurosurgery would like to admit you. They want some scans. Be ready to go at 5:45" He never said another word.

This was 5.5 hours AFTER we had gotten there. I called D and let him know we were being admitted and we frantically did the calling to find a sitter for Grays. Kelsey saved the day for sure! D came on in to town and we went off for a MRI and a shunt series.

MRI was bad. Ty was fine with everything else but the MRI he was just not having. I kept asking him to think of something brave and he finally said "mom, I can't think of anything cause I is scared" I tried to reassure him that he was ok as I was bawling my eyes out. It dawned on me to count. So I did. It worked and he stayed still and was perfect. ( Note to readers, MRI's WIll RIP OUT YOUR BOBBY PINS!)

Got back to the ER room and we waited. D got there and we sat. He never did see a doctor. We never saw another doctor the rest of the night and so I started bugging the nurses around hour 7. Yes 7 hours in the ER.

She had gotten the MRI results. Shunt series was clear. I wanted to see, she said no. I said pretend you don't know. She showed me. What I could tell- larger ventricle in one spot. No other changes. What the doc could tell - Larger ventricle in one spot, no other changes. HMMM ( I should get paid for this Shiz!)

FINALLY we get cleared for Ty to eat and drink, except the cafeteria is closed and they dont' have food on the floor. He ate a kit kat, orange, and root beer and oreo's. And they finally moved us up to neurotrauma.

Did the check in, talked to a doctor. ( We had only been there like 5 nano seconds before she was in with a plan) I took off to get an over night bag. Dallas hit his wall of " My wife is at peace and has stopped crying so now it is my turn wall." I get there, send him home to Grayson.

Ty had a bad night for the first part. He was having a bad dream and they kept bugging him. Finally after they tried to change his diaper in the middle of the freaking night I played the mean mom and said " You know, he doesn't pee at night. He hasn't had anything to eat or drink because it took everyone forever, and he is asleep. If you don't want to leave him a lone, then I will pack his stuff and take him home." Poor lady. She left and the nurse came in and said a few things and I said a few things back. We weren't bugged again till 8 AM.

We got up, and Ty ate 4 pancakes a bowl of cereal and a muffin. We went off in search of something to do since he wasn't sick sick. We made Grays 5 airplanes and Ty and I read Clifford in Spanish. While I am thankful for the chance to learn Spanish while I was on my mission, I was even more thankful that while I was translating it into English we had the same book. Ty loves to hear Spanish though. So we did a Spanish version and a English version. Then we played an hours worth of angry birds on the xbox. While we were on our way to kiss the frog our neurologist saw us.

She feels he did have a seizure but can't be 100 percent positive since she wasn't there. But she thinks he has a genetic sleep disorder. While I should have been a little shocked I started laughing. Well of course we do. His dad, Aunts and grandpa all sleep like crap. DUH! Of course. So we have a sleep study scheduled. We also have a EEG sleep deprived to see if we can't get him to have a seizure. But she wanted us OUT of the hospital so that we didn't catch anything that would make him sick that could cause a seizure. She also said that they were concerned that he could spell but not talk, so off to our neurosurgeon we go next week.

We were discharged 5 hours after being told we were going home. Why? Because that is how hospitals do it.

Got home to Grayson and the dad. Anxiety levels in this house are THROUGH THE ROOF. PTSD is killing one of us. Sadness is engulfing both of us. Exhaustion has crippled both of us. Grayson is 2. Ty stutters and says the same thing over and over and over and over and over and over... did I mention OVER AND OVER again. And he spells words, so I have to think about stuff.

The Tylerisms' that made the stay humorous:

  • We played BINGO so loud on the IPAD that they came running in thinking he was having another seizure and when the nurse got there he said, no we just suck at this game!
  • Ty was so polite ( not shocking) that the radiologist doing our exray let us play in the exray machine because Ty said it looked like a rocket ship and he loves his mom to the mystery planet. 
  • While waiting for the MRI, he had a room full of Mickey stuff, but we read the coolest, cutest book that got us giggling so hard that we couldn't help it. 
  • When they tried to put a probe on his finger he would just tell the nurse " No thank you." When she asked him again if he would please put in on he looked at her and said " Excuse me, what is your name?' She told him. He said " I am sorry, but I said NO thank you." 
  • While playing angry birds on the xbox with the Volunteer. He copied her when she said something under her breathe. He said " Damn monkey's, why won't you die!" Then said, mom, we are LOSERS!
  • When getting discharged he was SO devastated he didn't get a shot that the nurse finally went and got a syringe and pretended to give him and chicka one. He said, " I stayed here for THAT. That didn't even hurt us. C-A-N spells *insert crappy stuttering till I said it for him* we go home now?"

We are home, we are exhausted. My house is a mess. I still have to be a mom. We are slowly but surely getting through the laundry. We need to have a laundry folding party for the week. And I am exhausted. Mentally, physically, and spiritually spent. Financially.... well Send me some cash and we will surely feel better!!!

Tomorrow is another day.

1 comment:

stephanie said...

Wow! What a crazy time you had.