This last Wednesday spit in last Saturday's face, pushed it down and kicked it. Wednesday was evil. Wednesday involved not 1 but 4 seizures.
One in the morning that lasted less then three minutes. I stayed calm this time and called his regular doctor and changed his follow up visit to the next day. Then another one after I got back from the dentist, right before my mom was going to leave. I stayed calm again, called his regular doctor and was told to take him to the ER. My husband was at work and had the van and car seats because his truck is not working right now. So I call a most wonderful friend and she came over with her car and two car seats and away we went Atty, the baby and I. Hubby made it to the ER and told me that the brakes were going out on the van, I'm left thinking what else can go wrong today? Never ask yourself that, because apparently there is A Lot of things that can go wrong when asking such a question. The doctor came back in after consulting with Children's hospital and told us that we needed to head there immediately. Possibly for an over night stay. He asked whether we needed transportation in an ambulance or not, but after thinking about it I didn't want to be stranded down there so I chose to drive. We swung by the house to pick up a few things real fast. Atty was starving having only ate a little lunch so I gave him a few bites of banana and then we headed for the freeway faced with a little over an hour drive. Not even a few minutes after we got on the freeway he starts having another seizure. This time I didn't hold it together, I was terrified. It was worse then the other two and I was coming up fast on the last exit that would take us back to the hospital. I knew right then that I was going to be unable to safely drive us to the hospital. I made it to the side of the freeway a tiny bit past the exit. I have no cell phone (I know, I know we live in the ice ages.) so I couldn't call 911, I tried to lean him forward in his car seat and then I started to have irrational fears going on in my head one of them being maybe he had squirreled some banana away in his cheeks (he does do that some times) and now he was choking...I couldn't tell. So I had to back up on the side of the freeway and cut over on the grass to get to the exit, then I drove like a crazy lady with my emergency blinkers on all the way back to the hospital. While we were waiting for the ambulance (over an hour later) to transport us to Children's he had yet another seizure. I was thankful that this one happened in the hospital and the doctor could get a better idea of what kind of seizure it was, what it looked like. So they gave him some sort of relaxant and we were on our way to Children's. I won't go into my experience at Children's hospital right now, I'm still so burnt out, but it was not good. Very frustrating. Anyway we did end up staying over night, Atty, the baby and I, they started him on an anti-seizure medicine right away and did more test the next day. I got no sleep, they didn't even stop talking to me and doing paperwork until about 2 in the morning. Then between Atty and the baby and all the noise and the nurses etc...well there was no sleep to be had. We didn't leave the hospital until 8 pm on Thursday. I was so happy to leave that hospital behind and head home. Back to our new normal by Friday. Watched a daycare kid and got back on schedule. The other two boys are a little testy from all the change so it's very important that I be a steady beacon for them and get things rolling. Atty is having a lot of ticks and twitches and a few times he has arched his back and flailed backwards which is scary. Then yesterday evening he had a mild seizure lasting about a minute and I just calmly dealt with it and then laid him down to rest. I have all my instructions as to when I need to call 911, what I need to do if it last more then 4 minutes, and what to do if he is eating when he has one (my biggest fear right now, along with him falling off of something high or onto something sharp). I am trained in CPR and first aid for the daycare, so I technically know what to do in case, but I do worry about my state of mind if I am faced with such a situation. I pray that I will be level headed and in control. I know I can, but I don't know if I will.
I feel a sense of calm as I am faced with this new reality, with an underlying deep sadness. A sadness for Atty that this is now his reality, his life, on top of all that he was already faced with. A sadness over all for all the complications this adds to our already hectic lives. I am trying desperately to take it one day at a time but I can't help but wonder, will I be able to keep my daycare running through all this? How will we survive off of one income if I can't? What if we are down to one income and then my husband gets laid off again? What if we lose the house? What if, what if, what if? What if this gets worse? What if the medicine doesn't work? What is we have to try some of the nastier ones? What if his NF1 gets painful? What if he gets hurt? What if, what if, what if?
So right now I am reminding myself multiple times a day to let it go, and let God. I am in constant conversations with Him. I am praying, and praying and praying some more. I am forcing a smile on my face. I am forcing myself to keep going, and to remind myself that it could always be worse. I hate saying that but it's true it could always be worse.
Atty is so brave. Inspirational. Talk about some one who keeps on going. He is barely fazed by this all. He just keeps on going. I'm taking lessons from him.
2 days ago