We Made It Through Our Hospital Stay!
Well our goal was to be in the hospital for 4-7 days, record a seizure and hopefully leave with answers to how we could help Owen and that is EXACTLY what we did! It was NOT easy (if you haven't read my post from last night, feel free to go back and read about a pretty terrible day) BUT today we are home in the comfort of our house with some really good information to help our sweet little boy!
Daddy ready to go home!
First of, thanks to EVERYONE that prayed for us, sent me texts, emails, messages, etc. Thanks to everyone that brought us gifts, busy bags and meals. Thanks to my family who has been watching Jacob since Tuesday. He will finally come home tomorrow. We kept him at Auntie Mae Mae's house tonight just to give us a day to get settled with Owen but I miss Jacob so much my heart aches. So thank you to everyone that helped us through these last five days, what would we have done without you?!
As hard as these last five days were, there were WORTH it. We left Children's Hospital today with answers and a few options. After the neurologist saw how localized Owen's seizures were he decided to switch his daily medicine to something would work better. So his medicine was switched over yesterday after his seizure. Well through out the night last night and through out the day today Owen's EEG was normal, completely NORMAL! NO spikes, no discharges... a NORMAL EEG!!!! AMAZING, he has never had this before! So we aren't 100% sure if it's from just from the new meds alone. He is still feeling the effects of all the rescue medicine that was pumped into him yesterday morning so that may be playing a role too. His new daily medication is in the same family as the rescue medication so the doctor thinks his new medicine alone might be much better at controlling his seizures and alllow him to have a more normal daily life. His old medicine made him really drowsy, apparently wasn't controlling the discharges so he just kind of lived in a fog. The neurologist is hopeful that this new medicine will allow him to think clearer, have more energy and just have a more normal life! AMAZING! He said that the fact that he had a completely clear EEG for almost 24 hours is the best news we could get, some kids NEVER get that and never will, this means Owen CAN get there. Whether it be trough the medicine OR the surgery, his doctor is confident that we will get him up and running SO much better. The plan is to actually see if this new medicine can keep things under control for awhile. We are going to go ahead and get everything set up for the surgery but hopefully don't need to rush into it. We can wait and see if this new medicine can keep him controlled for awhile. Give me more time to heal from radiation before we rush into the next big thing, talk about a little breathing room! We are going to set up MRIs and other testing Owen needs to have done within the next month of so and then meet with his neurologist in about 2 months to assess how Owen is tolerating the medicine and how effective it is for him and decide at that point if we want to stick with the medicine a bit longer or proceed with the surgery. Just feels good to know that it may not be one thing right after another.
To be honest, I was a little nervous of how I would or will handle it. I would say right now I am running at about 80%. I am still adjusting to all the medicine I am taking. I am not myself, physically or emotionally and although I know I did a great job for Owen these last five days, I know I wasn't 100%. So the thought of him going through brain surgery when I am just finishing up radiation and could be running at like 50% or worse was really starting to freak me out, especially after last night, I was really questioning how we would do that. At least now we have hope that we can wait until I am back to 100% to go ahead with Owen's surgery.
It was kind of weird hearing the neurologist talk about Owen's situation, saying that his problems are all stemming from a really small area of his brain that isn't responsible for anything really important so it would be pretty easy to go in and remove it and solve the problem. It was weird because this is basically the exact opposite of my situation. My tumor is big, in a very important location and can't be removed without most likely greatly affecting my quality of life. But as any mother would say, she would much rather carry the burden and this is absolutely the case here. I am SO happy and SO relieved that Owen got the better end of this deal and I will happily take the shitty end of this one, go through radiation, lose my hair, feel like crap if it means Owen gets the chance at easier days. I would do ANYTHING for that child.
It felt so great to leave the hospital today. Owen was SO over being there. He is VERY emotional and very drugged up. He had his seizure YESTERDAY at 8am. Today at 7pm his right side of his face is still drooping a bit from the Todd's Paralysis. The right side of his face gets paralyzed after every seizure, depending on how severe the seizure was will determine how long his face takes to go back to normal. This was a pretty bad seizure so he is still droopy. As of 7pm tonight he was still nowhere near walking or weight bearing by himself. Jamie and I had to give him a bath together because he would just fall over backwards in the tub. It's pretty exhausting, especially considering I am still not supposed to be lifting more than 25lbs.
He was really happy to get home though and spent the entire day lounging on the couch. This is him in his Joker costume that he insisted on putting on the minute we got home. He is awake in this photo, this is just what he looks like on lots of drugs!
AND to my surprise... when we got home my sister in law had completely redecorated our master bedroom! I couldn't believe it. I have no before pictures because I would have never taken a photo of our bedroom that had NO style. We know have the most amazing room ever!!! I can't even begin to tell you how much I LOVE my room! The room had like nothing before, the bedding is new, the lamps, the light fixture, the curtains, the rug, the little bench! Amy said she just wanted to give me a place that I could retreat to, take a nap, refresh and escape the world. I think she succeeded! I HAD to share some photos! Also, special thanks to Julie who purchased the amazing bedding for us and to Jamie's dad A.K.A Poppi for his handy man work handing curtains and the light! I just can't thank her enough!
So a rough week but one that gave us some good answers! Thank you again for all the love and encouragement! Jamie just poured himself a cocktail and wants me to relax with him on the couch for a few minutes so I guess I should take him up on that. Then I am off to check into the five star resort that I now have at the end of my hall!
Praying Owen sleeps through the night, we ALL need it!
I'VE GOT THIS!