Tuesday, March 12, 2013

I can't let myself live in fear....(febrile seizure)

I can't let myself live in fear..

Last thrus was the worst day of my life. I woke up and followed our normal day schedule. I put monkey down for her nap at 2, I was going to wait a bit longer since the last week or so she was not falling asleep right away so I thought later might be better or that she is reaching an age where she might not always need a nap. When she does this I usually leave her in her crib to play or whatever for an hour or so for some quiet time at least.

Anyways around 2 I needed to change her and when I set her down on the change table she started rubbing her eyes. So I thought okay she must be actually tired so I might as well try and give her a nap now. I turned on the music and set her down and left the room. I didn't hear a peep out of her and at 4:30pm I realized wow she must really have needed a nap but being a mommy I started to worry and decided I needed to check on her. Even if she was still sleeping it might not be a bad idea to wake her up. Usually she would if I came into the room anyways because she might not go to sleep at 8pm easy. I stopped to use the washroom before I did so. The bathroom is right beside her bedroom. While I was in there she started crying. I was like well perfect timing on my part but I was also like crap she must have had a bad dream. That always makes me sad since I want her to wake up happy. I went into her room and she was laying on her left side. It looked like she was trying to push herself up in a sitting position but was having a hard time. I immediately became alarmed but thought maybe she was just sleeping on her arm and woke up to it being asleep and that was what was freaking her out. I was talking to her soothingly and was attempting to try and help her but became even more alarmed with the way she was crying and the way she wasn't even acknowledging that I was there. I was like OMG is she having a seizure!? For a split second I didn't know weather I should pick her up or not but then said the hell wit hit and scooped her out of her crib. I hugged her to my chest and then ran to the back of the house towards the phone. I stood in our dining room freaking out crying saying, 'please don't do this to mommy!'. I was home alone with both girls and Chris was due to be home shortly. I stood there holding her thinking what do I do!? Do I call work to see what Chris thought but as soon as that thought entered my mind I threw it out because I knew something was not right. I sat down in the chair, monkey in my arms and dialed 911. They answered right away and she connected me to dispatch right away.

I told him I thought she was having a seizure and that she was jerking around and having trouble breathing. I just had this horrible sense of dread and I was so scared for her life. This I would never wish on anyone. I was trying to stay calm but it was hard. The operator was really good at keeping me somewhat calm though and was able to tell me just how close the ambulance was. I still had her in my arms and he said it was okay just keep her on her side and make sure she doesn't choke if she happens to vomit. He asked me if she was turning blue and more then a few times if she was breathing. He even had me hold the phone to her mouth so he could hear. He asked me as well if she had a fever and I was like no? all confused because she wasn't even sick so when I put her down I wouldn't have thought she might be running a temp or there was no indication that anything was wrong. But then I was thinking now that he mentioned it she was really freaking warm. Of course as well it was jammie day and she was in flannel jammies. Yep that's really great when you have a fever. He told me to take as much clothing off as I could to help the fever. He said they are almost there. He tried to keep me calm and when he knew they were outside my door he let me go. I don't even remember running with her in my arms and down the short flight of stairs to the front door. I don't know how I still held her in my arms and unlocked it so could hand her to the ambulance people. He rushed her to the ambulance and another ambulance person talked to me about what was going on. I had Chlobug as well but thankfully she was in her swing. I went to grab my sweater and jacket and scribbled a really short note to Chris. I rried to find my wallet and her health card. I was a complete scatter brain. I was trying to be as fast as I could but it was hard since the faster I tried to go the slower I was. I didn't even think of Chlobug's car seat I just grabbed her and a blanket and a snow suit thing that probably wouldn't have fit her. The ambulance guy was not sure how we were all going to go into the ambulance but then the other one asked me about the seat. I was like 'GENIUS!' He helped me by getting her in it while I went and wrote a bit longer of a note to Chris.  Rereading it afterwards I don't know how he made any sense out of it.He said he had to read it a few times before he understood what I meant! I also didn't spell seizure right either.

I finally locked the door and we went to the ambulance. A fire truck had also there. You know how they say to always wear clean underwear because they day you don't is the day you are in the hospital. Yeah that was me that day. I was wear really baggy pj's and felt really shitty looking but when it all came down to it all that mattered was Monkey!

I got into the back of the ambulance and talked with the guy back there who assured me that the way monkey was acting was normal and that each person is different on how they come out of it. He told me that his brother or brother in law or someone like that takes a really long time to come out of it after he has a seizure. He told me that she is running a temperature. It was so horrible to watch her. I kept brushing her hair back from her face and telling her over and over again that it was alright that she was alright and that mommy was here. I really did not like seeing her eyes rolling back in her head and how her arms were like clubs and rigid and how her hands were like clubs. ugh just typing that makes me remember how she was when she was still in the seizure. I remember just sitting there thinking this isn't happening please don't let this be happening!! She's not even two years old! The other two were strapping Chlobug onto the seat in the back with the seat belt. They showed me that she was in there very secure. Then we were on our way. I barely remember the drive, but thankfully it didn't take to long to get to the hospital but when your in an ambulance that makes sense.

So we all got out and they handed Chobug to me and we went in. They brought her to a cubby and there was like a million of them on her. They asked me questions, things like is there anyone in the family that has this happen to them or if its normal for her to be licking her bottom lip repetitively. All of these questions were freaking me out. I don't remember half of what they were saying. Thankfully Chlobug was quiet and not crying this whole time. She was so quiet that the doctor didn't even realize she was there until one of the nurses pointed her out. Monkey was still out of it. The poor thing I hope she never has to go through anything like that again and because she is so tiny they were unable to get the IV in her left hand and she pushed that needle in a few times and then moved it around before they went to her right hand and did the same. The finally got it in and ended up having to put a block in her hand so she wouldn't try and rip it out. She also had to put a splint thing on her arm for the same reason. Then they were getting blood but couldn't get it out of her arm so had to take it from her foot. They did have the heart monitor thing on her finger but had to put it on her toe because she wouldn't leave it alone. She still really wasn't coherent enough. The one nurse asked me if there was anyone I wanted to call and after stuttering something she directed me to the phone. It was like one of my nightmares that I sometimes have where I need to call Chris (its usually him because I can't find him or I really need to talk to him) and no matter how I dial I always screw up. It was like that. I dialed like three times and got nothing before I got frustrated and asked the nurse that happened to come by the desk. Well duh Kristina you need to hit a line before you dial 9 and then your number. But it was a digital screen so I didn't see the line buttons. Finally I got through and then he couldn't barely hear me! The nurse said she had problems with that phone earlier and to just use the other one behind the desk. So I did. finally he could hear me. I tried to tell him what happened and he said that he was gathering stuff and then would be on his way.

I could hear the doctor and the nurses conferring and they were really concerned that she was not out of it yet or something that really freaked me out but you know how they talk in front of you but you don't really know exactly what is going on because they don't explain things to you. When I got back they were putting a drip into the iv line that was anti seizure medicine which freaked me out even more. I think they might have said to stop it. I took it at that time to mean that she was still in a seizure and they wanted to stop it. But now that I think back that she probably meant so it doesn't happen again.

Chris finally got there and then it was a waiting game. I have to say that I have never been more happy that I was still nursing Chlobug then I was that day. I almost stopped nursing her when she was 2 months old and I am SO glad that I was so stubborn and didn't give up because we didn't have to worry about bottles etc. It was really awkward to nurse her in the chair but since her head is pretty strong it wasn't that bad.

Around 7:45pm we started talking about what we were going to do for the night. We both couldn't stay up with Monkey. She wasn't getting any sleep that's for sure. First she had all these crappy things attached to her, she was constantly trying to pull stuff off and then getting really frustrated when she wasn't allowed. Poor little girl she didn't understand what they were doing to her and why. She had fallen asleep when they gave her that anti seizure medicine and it was after that that Chris got there so he never seen her the way I did before hand. When she woke up she was more aware of her surroundings and that I was there or that the doctor was checking her etc. She probably was so confused though but I don't blame her at all. It broke my heart to see her that way. I would have stayed with her if I could but since I needed to feed Chlobug, Chris and I decided that he would stay and I would go home with Chlobug and get some sleep and then come back in the morning.

The pediatrician that was on at the time came back and told us that every thing that they had done so far was coming back clear. They had taken her for a cat scan and there were no tumours or swelling in her brain, the blood tests came back fine and whatever else they did. She said because of that unfortunately they needed to test her spinal fluid so she would have to do a lumbar (test) thing. She came back awhile later to preform this. And again of course two nurses were holding Monkey down on the bed with blankets etc covering her to help hold in in place. She the doctor had got the tube or needle or whatever into her spin but was unable to get samples so they had to sit Monkey up and hold her again while she redid it!! Chris had to hold her head down so she was looking down to the ground. MY poor freaking baby!! She screamed!! I hate that she had to go through this! The fluid after getting a little bit she showed us was very clear, she said if there was an infection or whatever it would have been cloudy so while it was good that it was clear it still worried me about WHY this happened in the first place! They were still giving her Tylenol to bring down her temp a few times.

So I'm not sure exactly when everything happened this might have been at a time when mom was already on her way here. Because I had to nurse Chlobug and I was going home I really didn't want to be at the house by myself. I just couldn't handle it. The stupid cell barely had a signal but I was able to get through to mom and told her what happened. I wasn't sure if she was going to be able to come up since she usually watched my brothers boys after school and has done so since my sister in law has been in the hospital. I asked if Tammy was working the next day because she could possibly get them from school instead. I was like don't worry if you can't but mom was like no no that isn't a problem I just need to figure out how to make it work. I was SO relieved but I wasn't going to insist that she come up if she couldn't. I really didn't like the fact that it was basically 8pm and dark out already and it takes about an hour or so for her to get here. She told me she would call me back after she talked to my sister.

So she called back and I said I wasn't sure where I would be ( I  think this did happen before the spinal fluid thing) since I didn't want to leave the hospital until that was done. She said that she would call when she got here. So I figured that at 90 mins I would have to make sure that our phone was getting a signal so she could get through. It kept losing the signal. So then after the doctor did what she did we tried to get monkey to sleep but it wasn't working. It was so tiring! Chris said that if he was staying the night he needed to go home and get some food and grab some stuff and then he would come back and we could leave. I was nervous about staying by myself with the two kids since there was no way I could keep Monkey from pulling stuff out of her arm or falling off the bed! and also having to nurse Chlobug if she needed to be fed.
Of course the stupid phone was having a hard time when it came time to watch for moms call. When it finally found a bar there was a missed message and mom said she was now here at McDonald's by our house. She was like I'm not sure where you are and I can't even tell you my cell number to call me back. I didn't have it in the phone either for some stupid reason. I don't know if I was able to call the last call that I missed though. Our phone is not a smart phone lol.

So I called my sister and she was like I don't have moms cell. She said she was going to get it but mom never has it on anyways so she never bother. She was like I guess I should get it now though. She also told me that Jonathon did the same thing to her! That she experienced this as well. I was like what! Really? It made me feel a bit better but at this time I still didn't know what the hell was going on. She suggested that I call JP and that he might have mom's cell. I'm like idiot to myself he does live in moms basement so even if he didn't have her number she must have it written down somewhere. So then I call and talk to him for a few minutes. He said that she had just called home asking him to find her phone book to get my phone number or something. This was all so confusing since I just got the phone message from her but I take it that she didn't have my number when she got here so she called JP to get it and it took him a bit to find it and then she called me. But I missed the call because the phone wasn't getting a signal. Anyways he gave me her cell number to call her. He ALSO told me that John (his son) did that to them as well! His was due to a chest infection or kidney infection or something. I was like wth!! I never knew that about either of them. Turns out mom never knew either lol not until it happened to Monkey.

I had already lost this really weird surreal feeling I was experiencing when we first got to the hospital when the cat scan came back okay. Since that meant it wasn't something like epilepsy or anything and hearing that two of my siblings had the same problem made me feel a bit better. Considering when we first got there they asked me a few times if there was a family history. I still didn't know what was going on though.

So I call mom and she was actually at the ER doors since she just decided to come to the hospital anyways. She said her cell had died after calling JP and then leaving that phone message but when I called her it must have charged enough for her to get my message. So she came in and stayed with me while Chris left and came back. It was so nice that she was there because she watch Chlobug for me while I concentrated on Monkey. Unfortunately before Chris got back they had to take blood sample again. God that was hard to go through again. Poor Monkey her freaking arm was already bruised from earlier! I think I finally had got her to calm down a bit as well. The arm split was so frustrating for her. She was like laying there and then she would all of a sudden scream and throw her arm around trying to get it off. You could hear the frustration in her scream. I felt so freaking bad. She continued to randomly do that since she had that stupid thing on her as well. Finally one of the nurses suggested putting a sock on her foot and that seemed to help a lot!

Chlobug this whole time was still a quiet little angel and as happy as can be. Mom kept saying over and over again what a good baby she was. Chris came back and me mom and Chlobug left. It was about 2am by this point. I really didn't know how I was going to sleep that night especially with Chris and monkey at the hospital still but I knew that at least Chris was there. The nurse was going to bring in another bed so that Chris could lay down as well beside her and hopefully both would get to sleep. I didn't see how that was going to happen since monkey does not sleep on her back. More her side or stomach. That is really hard to do when you have a stupid iv in your arm!

Me and mom walked back to the car. I hate our car it's so small it's really hard to get the seat into the base and Chlobug is not really light. But I finally got her in there and we got in and we left (Chris got a 24 hour parking pass which made everything so much easier smarty pants) I dropped mom off in front of the hospital since she parked her car at the meters there.

She followed me back to the house and we went to bed. Chris had brought up the mattresses for the bed upstairs and put them in monkeys room,  that way mom could shut the door and not have the cats bother her. I fed Chlobug and we went to bed. I had a hard time falling asleep but I finally managed. I got at least 3-4 hours of sleep. I got up again around 8 and started getting ready to go back.

Chris called and said that monkey didn't sleep at all last night but finally was sleeping and that another pediatrician (the same one that seen monkey after she was born actually) had been by and was telling him that he didn't think she was going to need to stay the next night. They were going to send us up to pediatrics but there was no room up there. As it was there was another little baby in the same ER area as us staying over night. They also were not going to do the EEG that the pedi ordered the night before. Chris told me not to rush back since monkey was sleeping but if  I could get him a few donuts on my way back lol.

I finally left the house around 9am. Mom said that she would stay at the house and watch Chlobug which made everything so much easier. By the time I got back unfortunately the pediatrician had already been there. Monkey was up looking so small in her hospital bed and Chris was feeding her the breakfast they brought. I think it was cheerios and milk , eggs and an English muffing or something like that and some apple juice. She seemed in good spirits although she looked super tired and still had the iv in her arm. Once she was done eating the battle of getting her to stay in bed and not rip her iv out began again plus she was super grumpy. She whined and cried when I wouldn't give her a piece of my muffin! But it was chocolate so yeah. Chris said that the pediatrician made him feel okay that she would be safe to go home and that one of his child that had 6 seizures when she was small.

At one point a nurse came in and told us that it was hospital policy that when it comes with a potential of a infection that could spread we have to be in quarantined. She said I know it's stupid considering you live with her and if she had one you would already have caught it but we need you to put these gowns on, gloves and face mask. I also thought it was stupid that we had already been there for like 12 hours! She said hopefully we can get it lifted since I think they think it is not that. So we had to wear these dumb things. I think they were thinking it could be menegitis since everything else was coming back clear but they really didn't think it was that since the spinal fluid was clear when the doctor took samples. This was all procedure though until they got the results back.
I eventually had to go back to the house to feed Chlobug again and hopefully make it back before the pediatrician came down again since I wanted to talk to him and had a million questions for him. Unfortunately he came while I was gone again so by the time I got back to the hospital, roughly an hour later, Monkey was being discharged. I guess the only thing he told Chris was to call his office on Monday morning for him to see us.
When I called  monday morning after worrying the whole weekend (especially around her nap time since that is when it happened) it sounded like he didnt really didn't need to see us but scheduled us in because I had a million questions. I think he also knew that I was really worried and since I hadn't talked to him directly he was more then happy to see us. He really is an amazing doctor. After our appointment he made me feel sooo much better. Basically he figured she had a febrile seizure and that is actually pretty common and normal, more so if there are close family members that experienced one. He told me that I was still going to worry and probably for a long time but he said that if it happens again if I needed to to just call 911 again.
I can't tell you how relieved I am to know that it is normal and common! But it does still freak me out that it happened for no reason? I didn't think she was sick or not herself before it happened and they didn't find a infection or anything! My sister said it was the same with my nephew and since this has happened mom has talked to a few people that had the same thing happen and more specifically they didn't know their child had a fever until after it happened. Febrile seizure's are brought on not by the fever itself but by the sudden raise in temperature. Treating a fever is no guarentee that it still would not happen. So friggen freaky especially since I had never heard about this before it happened to Monkey.
Febrile seizures also have less of a chance of happening again the older the child is. Since Monkey was almost 2 when she had her first one I think she only has 1 in 4 chance of having a second and from what I have read usually that happens within the first year. They also normally stop after age of 6 so only four more years or so to go of worry! I hope Chlobug doesn't do this to me to I don't know if I could handle that!
okay phew this is long. Thank you if you have read down this whole thing! lol :) I hope that it NEVER happens again!

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