The past few days

On Thursday there was a nurse in evaluating Finnian and he decided that he would have a seizure while she was here then he did his best to throw up. The usual thing he does when he has that seizure even though they say the vomiting is not related to the seizure.
Friday was busy and of course Finnian decided to keep us on our toes. He had 2 yes 2 heart rate drops. I have started to carry around the small finger pulse ox and I noticed he seemed out of it and then he got very pale. So I pop on the pulse ox and his heart rate was 37 " woah mama" so I just shake his chest and his heart rate came back up to 74 and kept going up. So I just left the pulse ox on just incase. So we stop over at my Mom's and picked up the mail and droped off the milk as she was coming back from her trip. Came home and as I was putting the key in the door I just glanced down at the pulse ox and it said 26 so I just start shaking his chest and as nothing was hapening I then started to bang on his chest thankfully his heart rate jumped up in to the 60's and then came back up to his normal numbers. As soon as I got him in I put on the bigger pulse ox and its only going to be off him only when he is the bathtub. I have to change his buggy around so he faces me and I can keep and eye on him while we are out. I am also going to get an appointmnet with the cardiologist so they can check his heart out again.
All he does is this blank stare goes ghostly white and then the arse falls out of his heart rate.

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We had our follow up and we have a new doctor

Well yesterday we had our follow up appointment after Finnian's 11 day hospital stay with Dr.A. It was so nice to see her again. She showed us the seizures on the EEG that he had in the hospital she also showed us his last MRI and explained a few things that were there. So when she said that when we follow up with the doctor we just asked if she would be his doctor again she agreed. She didn't change any of his meds as she would like a full detailed account of what he does and when he does it. She also wants him to wear his pulse ox at night and keep an account of when it goes off and any physical involvement he shows.
Well last night even before I got to put it on he had been asleep and next thing he is screaming I run in and there he was on his back and his legs out in a full tonic extension and his hands down straight by his sides and then the next thing I just see white stuff shoot up like a geyser from his mouth. Yup he was vomiting, all I could do was roll him to his side until the seizure was over then he just kept vomiting until he had everything out of him. Everything had to be basically stripped off his bed as there is nothing worse than his formula soured.
Thankfully the rest of the night was uneventful.
Today he woke up from his mid morning nap and his eyes are flying all around and he starts the chewing and we just knew what would happen next, yup he threw up again. There was a nurse in doing paper work on him and she was like "wow his heart is racing" That's what he does. So we now know we just have to watch him as this is what happened before he had that weird seizure. So now we are just watching and waiting to see what happens.

Do you know what my little stinker did?

He disconnected his feeding tube again. He was having a great time on the couch yapping, laughing. All I am thinking "well you seem to be over the snotty nose" and having fun. Next thing his feeding pump started beeping "no flow out" showed on the screen. So I went over to check it out there he had the tube crimped up in his hand and formula everywhere.
Roll on 6am until I can get downstairs to the laundry room. By then the pad and the pillow will smell really lovely. So guess who will be doing laundry bright and early on Monday morning?

I am tired

I am sooooo tired. I haven't had a good nights sleep in almost 3 weeks. I think the most I have gotten is 3.5 hours straight at a time. Even the nights I got to come home from the hospital I didn't sleep right every noise I heard I would get up to peek in on the kids. I have no problem falling asleep its staying asleep I have a problem with. No I can not take a nap during the day cause if I do I am up all night and at about 4.30am is when I get tired and could sleep for hours.
Last night I was up and watching TV there was a good program on about Focal-Dystonia and who was on it Finnian's movement disorder doctor.
All I need to get is one night that I can sleep at least 6 hour straight then I will be back to myself.
I suppose with Finnian now having a cold and he makes all kinds of snoty, grunty noises I just associate the noises with seizures I just pop up and go in and check on him.
Just a few more days and we get to go back to the neuro and see what results are in from his 11 day stay. Hopefully Dr.A can shed some light on whats going on in his brain.
I was reading a book all about the brain and it said that the brain produces enough electricty to light a 10 watt bulb so I was thinking then if a child has seizures and is having alot of subclinical seizures the could keep that 10 watt bulb lit for a few hours??????

Follow up appointments

Called today to get Finnian a follow up appointment after his 11 stay in the hospital the earliest they could give me was Nov 19th well hello we already have an appointment on the 18th of Nov.
I asked if Dr.A was seeing paitents. Dr A was Finnian's doctor 2 years ago but had moved out of state but now is back. We were able to get an appointment next week. So very happy about that.
Hopfully Dr. A will be able to shed some light on the conflicting reports I was getting during his stay.
My little man has been awake since just after 2:30am and is having a fun time playing in his bed. I guess tomorrow will be a sleepy day.

Well wouldn't you know it

Do you know that our Finnian wasn't even 24 hours at home when he had one of his bloody seizures. AAAGGGHHH talk about wanting to pull my hair out. We spent 11 days in the hospital and 24 hours at home and he has one.
You know his day was going great he was having a blast with Bonnie his nurse he was rolling over, pushing up on his hands making all kinds of sounds and really having a great day. I was up to my eye balls doing laundry so I was in and out. At about 1pm Bonnie said I think he just had one of his lipsmacking episodes. But he was fine so we didn't think any more about it. So I was just about to walk out the door to pick the kids up form school next thing I heard Bonnie "he's havign a seizure" and sure enough as I was running in the door I heard the "shout". She got his moniter on him really fast so we could check his O2 rate and heart rate. It was over in about 2 mins and his oxygen didn't go lower than 88% his heart rate was in the upper 190's low 200's and that is what normally happens with the "shout". He has been fine since he had his little power nap after the seizure. So I don't know what's up with him and may be we will never know.

He's home

Our Finnian is home. I am so happy so now we can get back to our normal, well what ever that is.
I don't know about his stay I have been getting conflicting reports from doctors. So called to get an appointment with his doctor and cannot get through to the office.Maybe they have my number blocked. I think I ruffled some feathers but hey its my kid and I only want the best for him.
I know he will always have seizures and even with medications we will always be chasing them.

The one thing everyone is so keen on pushing is Clobazam. It seems that this is the new wonder drug that isn't even FDA approved. Maybe this might be something that would work on Finnian but at least try the other meds first. I am not a lover of the benzo family of drugs. No more than the klonopin he was only supposed to be on it to get him off one med so we could put him on another but it seemed to be working so he has been on it for the last 3 years. The thing is we cannot go higher on the dose becasue when we do he doesn't stop drooling and needs to be suctioned alot. I will be damed if I have to add another med to stop him from drooling on top of everything else.
It seems like we are damed if we do and damed if we don't.

Well for more than a week I have been telling everyone to keep their fingers crossed that Finnian would have a seizure so we can get to the bottom of these weird ones. But now I am asking everyone to keep their fingers crossed so he doesn't have one so he can come home.
I am tired of fast food my poor belly doesn't know what happened with all the junk I have consumed. Enough all ready.
I said to one doctor that I hope that he has one of his episodes because I feel that they don't like believe me. I am anal about his meds and keeping to a schedule so nothing happens but sometimes no matter how hard we try "shit" happens. In one way I am glad I did tape it because I have proof that these things happen.
Had a doctor ask again today if I had discussed any other meds to try Finnian on so may be we could get him started. But at the same time I am being given a different version that he is just having sub clinical with no physical involvment. So then why if they are something I am not to worry about are they in such a hurry to add more crapy meds?
I am a big girl and I hate that no one has the balls to tell me what is going on. They are really pushing my buttons on this and I am just starting to simmer. I really don't want to hit the boiling point but skirting around the issue is really making me boil.

He's still in the hospital

Our lad has been in the hospital since Thursday. They are hoping to get one of his bad episodes on EEG. I know its horrible to think that I hope he has one but for over 3 years we have been chasing the one that effects his breathing. The other one is crazy scary because it messes with his heart rate. Both put him at higher risk for SUDEP.
SUDEP is Sudden Unexplained Death in Epilepsy. What causes SUDEP? Irregularities in heart rhythms, breathing dysfunctions, disturbance in brain circulation, and seizure-induced hormone and metabolic changes have all been suggested as potential causes of SUDEP.
For more information on SUDEP you can go to www.sudepaware.org
So you can see why I need to know if these "episodes" are in fact seizures and what type of seizures they are and the part of the brain they affect. The whole idea is to say yes they are seizures and get him on the right medication to hopefully control them or at least to quieten them down.

I thought I would have to teach my son about the world.
It turns out I have to teach the world about my son.
They see a little boy who cannot talk.
I see a miracle who doesn't need words.
"anonymous"

A little up dated

Well last night he threw up ( yeah). He had some eye rolling going on at the same time. This is something that he does at home. Thats why his electolytes are low. Hopefully it will show some seizure involvment.
Then early this morning when they came to draw blood he was jumpy jerky and twitching and then his leg was shaking.
Hopefully this will give them some insight on him.

He's still in the hospital

Well our lad is still in the hospital. Don't know if they are going to let him go today the doctors haven't been around yet.
Please keep your fingers crossed that he will have an "episode" like he had at home while he is in there as we need to know if its a seizure or if he could have one of his "shout" episodes.
They have captured some seizures to do with his eye rolling at least that is a start. But we need to get to the bottom of the other 2.
I know in my heart that they are seizures and not good ones because of the affects one effects his breathing and the other effects his heart rate.
Keep your fingers crossed that they can get to the bottom of it.

Got the call

Got the call so we will be going to the hospital soon. Fingers crossed they will be able to tell what these "episodes" are.
Will update when I know anything

Dirty nappy

It was just after 2 am and I heard Finnian making noises and kicking so I got up to take a peek in on him. Well first thing that hit me when I went in the door was the smell. Oh great a dirty nappy. I don't know why but I usually only put on the little light but last night I put the big light on and when I turned around to look at him, my mouth I swear nearly hit the ground. There was crap everywhere. I mean every where. His bed pads, his sheets, his pillow case, his pillow, the padding on the side of his bed, the wall, his face, shirt, belly, his legs it was just everywhere.
So he ended up getting everything changed and he also got first wiped off and then given a bed bath. Then new sheets, bed pads, pillow case and jammies on. Do you know he didn't go back to sleep until almost 4:30 am.
All I can say is thankfully I use white sheets so they got bleached today and everything came off.

What a morning !!!!!!!!!!!!

Well our little lad really pulled the rug out from under us this morning. He had what I would say was a seizure but until its caughted on an EEG the medical professionals are only calling it an event. It lasted for about 16 minutes in total. He ended up on oxygen as his heart rate dipped down as low as 38. This was a first for him as his heart usually races during a seizure.
To top it off about an hour later he had a different event one we have seen before but havent seen in a while. We also havent gotten it on EEG so they cannot say its a seizure either. But he has been having this one off and on for about 3 years.With this event his heart rate went up to 189 and his oxygen hovered around 90%. THat was good during this event as his oxygen usually dips much lower.
So now they are working on bringing him in for an EEG to see if they can capture these events. Knowing Finnian they won't get the ones we are trying to figure out if they are seizures. So now we wait and see when we are going in.

Its wait and see !!!!!!!

Thankfully Finnian was a bit more himself today. He took his feeds no problem and I only saw 4 of the new spells. Finally heard back from his doc's office, they don't think they are seizures because there is no way he would be normal and having these spells all day. We never said he was having them all the time. He would have one may be 1-2 mins then he might not have them for 30 mins or more or he might have them 2-3 mins long and have 3-4 in 15 mins. When he would have that many he would get very tired and go back to sleep. All they wanted to know if I had gotten in touch with movement. Of course I had and Ihad gotten more positive feed back from movement than I got from them. If he continues to have the "spells" maybe I should take him to the ER. Otherwise they will be in touch on Monday and may think about taking him to see what they are. You know Finnian being Finnian we would get him in to the hospital and he wouldn't have any. Its happened in the past.
I know I am not a medical professional and I can only say what I see and how he reacts but for ******* sake at least have the curtsy to at least listen to the whole description of what we say and just don't pick pieces and say that's what we said. I might speak with a bit of a thick accent but that doesn't mean I am stupid. I come form the land of Saints and Scholars. A saint I ain't but if I could get my hands on the right books you would be surprised at what I could do.

Something is off

For over a week our Finnian has been doing this chewing, tounge clicking with his eyes turning to the left. It started out that he would do it maybe 2-3 times a day but you would have to watch out as if he was getting fed when he had one of these "spells" he would throw up.All we were doing was making note of these "spells". I had called the doctors office as we need a script for one of his meds and had told them that he was having these new "things".
Well last night he threw up while asleep and stayed asleep while I cleaned him up. About an hour later he started crying while asleep and nothing I did calmed him down that lasted about 2 mins but seemed longer. About 20 mins later he woke up and started the tounge clicking but he went back to sleep again. I told his murse all about the night and she was watching him and said call them again and that she would also speak to the doctors office and tell them what she was noticing about Finnian. So the end result of the conversation was she was going to speak wth the docotr and we had to get intouch with the movement disorder people to let them know what was going on with Finnian and to see what they thought. Dr. H said its not a side affect of the med he is on for movement but she would talk to Finnian's neuro. She was thinging along the same as us seizures.
Look I know he will never be seizure free for extended periods of time and any day we don't see a seizure if a "bloody fantastic" day. I am not a parnoid mother that screams seizure with ever little twitch, jerk that he makes. I am a watch and wait and see type of person. But I hate to see him having these "spells" and then sleeping more hours than he is awake and then there is also the issue of him throwing up if he is being fed while he has one of these "spells". The safest time to feed him is when he is asleep but it doesn't always work sometimes he will throw up after he wakes up if he has a long spell. We just have to wait now and see what they are going to do with him change his meds or bring him in and see if these are really seizures.