June 23, 2016

On June 23, 2016 we had probably the worst scare with Eric......ever.   At about 7:30 he and I were sitting on the couch.  He started to get up and said Mom, MOM!  I looked up and he just dropped.  Fortunately Doug was in the recliner and caught him just as he was about to hit the floor.  His body began shaking violently completely tensed up, teeth clenched and growling.  Doug immediately said CALL 911! ( Which I was already doing.)  I was clear headed, and said I need an ambulance at (our address) she said "what is the problem"  I told her my 19 year old son was having a seizure, she asked if he had a history of seizures, and I told her no.  Doug is with Eric and trying to keep him on his back but he had bitten his tongue and blood was coming from his mouth and he screamed at me "HE'S NOT BREATHING!"  I told him to turn him on his side which he did and the blood drooled out the sides of his mouth.  The 911 operator said, "you're doing the right thing, they are on the way."  Doug is praying over him the only thing I could say was JESUS PLEASE HELP MY BOY!"  The paramedics got there and he was beginning to come out of it.  They wanted him to sit on the couch so Doug helped him up and we tried to get him to sit but he was just not with us yet.  He had no control of his head and just kept swaying in circles looking at me with that "I AM IN HERE HELP ME" look.  Talk about the absolute most helpless I have ever felt in my life......just no words.  The paramedics asked all the questions about drugs, etc.  I told them "no, he is Straight Edge"  (see tatoo on leg.)  They didn't know what that was.....:)  The took his blood pressure, etc and tried to put the pads on him but Eric would have none of that and kept pulling them off and throwing them (same with the blood pressure cuff) so they gave up on that!  I just kept talking to him putting my face right in front of his telling him to calm down, everything was going to be ok and they are trying to help you.  The ambulance got there and they brought the stretcher in at which time he became a little more coherent.  He laid down, they propped him up a bit and lifted it up.  It made a noise and it seemed like that is when he actually came back to us fully, well sort of. They had him strapped in and he pulled at the straps and said "what happened?"  I told him he'd had a seizure and we are going to the hospital to get checked out. He pulled at the straps again and I just told him, that was protocal, they strap everyone in for safety.  He accepted that and we started out the door,  He did NOT want me to leave his side and was becoming agitated.  The paramedics were great and I just stayed right there with him.  I hollered at Doug to grab my purse.  And to bring another shirt to the hospital.  Eric's white shirt had blood all down the front of it.  We got to the ambulance and they told me I would have to ride up front.  I knew that was not a good idea but didn't say anything.  Then one of the ambulance paramedics opened the back side door, no words needed, I just got in the back.  I was at Eric's head and he kept reaching for me saying "mom I NEED you."  They had closed the doors by that time so I just went to the bench with the seatbelt that was beside the stretcher.  They both came in and kept trying to start an IV in his hand which he was having none of and wouldn't stay still.  Mind you Eric has been stuck hundreds of times throughout his cancer, ITP and Hemolytic Anemia journeys.  I reminded him it was nothing new and he had done this many times before.  The vein in his hand blew and they started to try in the arm (which he hates) and they could tell, they may as well forgo this one!   So the ambulance driver asked me the best way to Mercy, thru town or the interstate (I had my FedEx uniform on still.)  So we took an ambulance ride.  Before we even got out of Lowell Eric said "my thumb is twitching" and BAM he went into another seizure.  He bit his tongue again so blood was coming out of his mouth and I just kept talking to him and praying and wiping blood.  As it was beginning to subside and he was growling with clenched teeth blood still drooling the paramedic told him to open his mouth.  He did ever so slightly and he stuck this L shaped hollow plastic thing in his mouth barely between his teeth.  But wow, the air he was pushing thru that thing was astounding and he seemed to calm quicker the second time.  The paramedic took advantage of the 1 minute that Eric was calm and got an IV started in his arm.  

By that time we got to the hospital and everyone saw all the blood on his shirt and things happened pretty quickly.  They were moving him from the gurney to the bed and I knew he didn't have control of his head so I just asserted myself to his head and held it as they moved him over.  They took vitals, etc.  The ER doctor was Dr Vo.  We really appreciated her quick assessment and she ordered blood work and a CT scan pretty quickly.   They came in to take him to CT and the nurse said "we'll be right back with him."  At which time Doug looked at me and said "you'd better go with them."  When you've been thru what we have and seen how things are done differently in a children's hospital, you know, it's really not a big deal to walk down there with the patient.  If it keeps them calm, what's the harm in it?  The radiologist and nurse exchanged a "look" but you know what?  I DIDN'T CARE!  Ok, I'll get of my soap box now.  :)

Eric was pretty well calm by now but extremely tired.  They started him on fluids and he asked me to text his youth leader Nick and his good friend Ethan.  He wanted their prayers.  Next thing we know, here came Ethan and about 10 minutes later Nick walked in!  It was awesome and just what he needed.  They stayed for about an hour (I think?) which we REALLY appreciated.  Finally Dr Vo came in and said they had found an abnormality in his brain which he'd probably been born with.  She wanted an MRI but said that would have to be done the next day and did we want to stay the night or just do it outpatient.  I let Eric make that call and he opted for staying the night.  We are very familiar with Mercy and thought we would be going to 5th or 6th floor which are the general patient rooms but when they said 4th floor I asked ICU?  They said no, step down, which is literally 3 doors down from ICU.  But they don't have a neurologist on staff in the hospital so they put him in a room with a "video nurse" from St Louis.    

We got to our room on the 4th floor and it was as I had suspected, no pull out bed, just a recliner.  Been there done that with Doug when he was "3 doors down" in ICU.  And, no way this mama was leaving her kid, video nurse or not.  The floor nurse had trouble with the pulse ox monitor on his finger and she finally asked for help and another nurse came in and told her she had it plugged in backwards.  A teachable moment for sure.  However the stupid thing kept going off All Night Long.

Between the alarm and the recliner.  Not much sleep was had by me.  Eric however was like a log.  They woke him to take pills, ask him if he knew where he was, what day it was, birthday, who is the president, etc.  He answered and promptly went back to sleep.  We knew the MRI was ordered but waited and waited and waited.  A doctor came in early and said she had ordered the MRI and it should be around noon.  About 1pm another doctor came in and asked all the same questions and said "well, I am going to order an MRI and they will have to work you in."  Geesh, helloooo communications folks?  Anyway, he also ordered an EEG and that tech came to the room and was surprised that he hadn't had the MRI yet.  So he went ahead and put a gazillion leads on Eric's head and we did awake, breathing and sleeping tests.  Of course right in the middle of it they called and wanted to take him for the MRI.   Hospital time.  The sleeping part of the EEG was no problem, the problem was keeping him awake!  Finally they took him down and told us we would be in room 6 something when he came back so if we wanted we could go wait up there.  We really thought we'd be going home but began to resign ourselves to stay another night.  Doug and I went to the cafeteria and got Subway then to the room to wait.  He finally got back and we got a very pregnant sweet nurse who did all the normal new patient stuff.  About 30 minutes later she said the Doctor had called and said his MRI was "all clear" and we could go home.  Doug said "what does that mean?"  And she said I don't know, let me call the doctor.   He meant the MRI was all clear meaning no tumor or other abnormality other than the one that we were originally told.

Oh happy day we were headed home.  Thank You Jesus.  :)

Eric has been diagnosed with Schizencephaly.  It is a rare birth defect found in only 1 in 200,000 people.  He has a cleft on one side of his brain that caused seizures.  He is on 500 MG of Keppra twice per day.    One more thing to add to his history.  He is a special special special guy to be chosen for this one.   It is probably related to his Optic Nerve Hypoplasia.

I am going to end this and start another post for the "Now What"  portion.