Will this nightmare every end?

There is a reason why this blog has been so dead for the past week...a whole lot has happened. I've been feeling kinda crummy, so on Sunday I went to the ER because...well...when you cant catch your breath, get dizzy trying to breath, pain in the lungs and laryngitis...I figured I'd better get looked at. Come to find out that I have an upper respiratory infection, acute bronchitis and pleurisy. Ouch. So finally they gave me antibiotics and pain meds and sent me home. Its been a looong week. I have been exhausted. All I want to do is sleep, but laying down hurts my lungs. I have so much to do, that if I do rest, I am afraid I wont get up...really! I've also been worried that Kenny was coming down with something, even as far back as last Friday. I brought him in for his weight check and I mentioned to the doctor that it seemed like he was coming down with something. He was doing the post nasal drip gag sounds he makes (when he gets sick) and had a cough every once in a while. So fast forward to Tuesday night. He started this coughing at night...nothing major, just a little cough. By Wednesday morning, his nose was running like crazy. I put a call into the doctors at his Comprehensive Care and told them that I was concerned and that he was shaking like crazy, wasn't sure if it was small seizures or not...but then I decided to take his temp and it was 102. Ahhh...duh....THATS why he was shaking...fever!!! So they told me to switch off giving him Tylenol/Motrin, which I did. It broke the fever and he went outside(on the deck) to play...he was feeling pretty good. He didn't want to lay around or anything. About 7:30 pm, he wanted me to hold him. I changed him into his pj's and gave him a bottle, rocked him on the rocking chair where he fell sleep. My sister Andrea and her son, Dominic came over around this time...which she never does on a school night...I laid him on the couch to sleep (still no fever). Now, keep in mind, Tony, my husband was at the school in a meeting...phone not working there. At about 8-ish, we both(my sister and I) happen to walk into the living room and looked at Kenny on the couch where he was staring upwards. We both looked at each other and Andrea asked if he was alright...I wasn't sure until I went over to him and tried to snap him out of it. Then at that point, I knew he was having a seizure. He was burning up and just staring. I walked around holding him upright for a while (i was panicking, crying...not very brave)...we had little Tony and Dominic call 911 and I then gave him his Diastat, which I honestly never thought I'd have to administer to him. I stripped him down of his clothes and Andrea threw me a bag of peas to put on his head...it was horrible. The ambulance came and I ran him out to them instead of waiting for them to come in. The paramedics were the same ones from when Kenny had his seizure in November...they remembered everything! I just have to say that they were Awesome! I sent Tony and Dominic up to the school on their bikes to get my husband because he had no clue what was going on. I was trying to stay calm and remember all the meds...of which I know now to type something up (which I am doing today) that has ALL of his meds on it and All of his diagnoses on it. I was trying to remember everything and some things just came up blank! UGH!

Anyhow, he is now at his 2nd home, MetroHealth. On his favorite floor with his favorite nurses. When they wheeled him up from the ER (he was still really out of it) all the nurses were welcoming him back. It was cute.

They took tons of blood and swabs to culture to see what type of infection there is and where. His fever has been coming and going...as of last night, it was 102 and steady. So that is where we are at this point. His lungs sound and look clear...thank God, so its just a matter of trying to figure out what is going on with him. One thing is for sure, we now know one of his epilepsy triggers...a fever/virus.

I haven't been able to sleep there because I am so sick, so leaving him is just killing us! This whole thing...very overwhelming. I know that there is a reason for this...not sure what, but there is. Tony and I are becoming very tough skinned when it comes to things. Heck, I even hold Kenny's arm when they need to put an IV in him! LOL. We don't need anything but if you could just say a prayer for Kenny, that would be very deeply appreciated. The poor kid has been through more in his almost 3 years of life than any adult I know. We could also use some prayers as well (Tony and I). There are people in this world that have no clue. No clue as to what having a chronically ill child with disabilities is like. The terror in when he gets sick...not knowing if he will die (this time) or not. The countless nightmares, the being torn between hospital and having to work and take care of the other kids and the house. My sister Andrea finally saw what we go through...I feel bad that she had to see Kenny have a seizure...its very very scary. It's like looking at my precious little gift from God and seeing him being taken from me. We are exhausted. Emotionally and physically drained but wont let this get us down. I am very grateful to her for being here when it did happen. I was so scared.