Goodbye Hospital-The End of an Era

We ended our 4 month stay at Vanderbilt Children's Hospital last Wednesday. The last time we were being told we would be released was over 1 month and 1/2 ago and I was scared to death. That plan wasn't carried about because there were issues getting the nursing assistance in our area that we were told would be much needed regarding Lex's care. I was relieved at the time because the thought of bringing Lex home was so intimidating to me. After living that extra month and a half in the hospital and becoming more and more comfortable with Lex's situation I realize now that the delay was no accident. As each week went by I realized how eager I was now to get home and start living a real life again, despite the fears that I had. Finally, two weeks ago when Joe Mike and I were talking we decided that we'd had enough. We were ready to take Lex home with or without a nurse. We told the doctors and our case worker at the hospital this. At the time, Lex had an infection so I knew I still had a little bit of time to get more adjusted to the idea that the place that had been home to me for so long would be a thing of the past. Being a sentimental person, I kept waiting for this thought to invoke some kind of negative emotion-but it never did. All I felt was extreme excitement at the thought of escape. When the day finally came to leave, those sad and fearful emotions continued to steer clear. We headed home with huge smiles on our faces and haven't looked back since. I would describe looking back at the past four months would be like I was holding my breath the entire time we were in the hospital. The minute I sat down in the backseat of the Expedition next to Lex in his carseat was when I finally exhaled and life felt real and good again. I have never appreciated life so much as I do now and I am loving and cherishing every minute of it. Everything just feels happy. For many reasons, some that I haven't mentioned here, I can genuinely see a lot of what God has had in mind when looking back at April-August 2010. Part of 'the purpose', I would imagine. It definitely makes me a lot less anxious about what happens next.
So how is Lex doing? You ask. I never could figure out a good way to answer that question until recently. Lex is 7 months old, but he doesn't do things a 7 month old does. He doesn't smile, sit up, roll over, reach for things, etc. So that's bad, for a 'normal' 7 month old. BUT he has almost mastered rolling from his side to his back and is moving his neck better-that's good, for Lex.
Lex has many seizures each day in which he stops breathing, bad for any person. BUT there are days when he only has 1 or 2 seizures-that's good, for Lex.
SO, on Lex's scale-how would I say Lex is doing? I'd say okay, for Lex. We had an awesome ride home on Wednesday. He had 0 seizures!!! Show off...But the next day he had 13, after 6 in an hour we gave Ativan. Friday he had 16, Ativan twice. Saturday there were 10, Ativan again. Yesterday he had 10, but he kept them spaced out so no Ativan!! Woot, woot!! Today he has had about one an hour so far and is at a total of 13. He's kept them spaced out also, but they are much worse than usual. Lex seizure's aren't really like the typical seizures you imagine with shaking and all, but ever since last night he's been pulling that trick out of his hat-in addition to desaturating with them. So after reviewing his seizure performance since we've been home I'd say production is over double his normal seizure output and we're praying that it has something to do with his environment change and that he'll settle down soon. Either way we are still so thankful to be home with him and are loving every minute of it. We are still so thankful for everyones kind words, thoughts, considerations and, of course, prayers. We haven't brought Lex home from the hospital with a cure or even a way to 'quick fix' his symptoms. He is still struggling a lot and still needs lots of prayers. Thank you for loving him.
5 Reasons to Praise Jesus
1.) We're HOME!!!!!!!!!!!!!
2.) We really like Lex's pediatrician :D
3.) Lex is growing!
4.) We have so much great support and help
5.) Lex has been waking up more :D
“Jesus spoke to the people once more and said, "I am the light of the world. If you follow me, you won't have to walk in darkness, because you will have the light that leads to life."” (John 8:12 NLT)