Wednesday, April 2, 2014

Owen's WADA test completed!

We made it through the day!  Hooray!  I am SO proud of Owen.  He did SO great today.  We had to wake him up this morning at 6am and we put him right in the car.  He didn't seem to remember what we had talked about last night regarding going to see the doctors and we certainly weren't going to bring it up when he was hardly awake.  He was kind of in and out of sleep the whole way to the hospital and woke up when we were in the parking garage at Children's which he immediately recognized.  He started crying and saying he wanted to go home.  We reminded him why we were there and brought out the sticker chart.  You could tell he was still scared but was trying to tough it out.  As we were looking for a parking spot they started testing the fire alarm.  Owen isn't a real big fan of loud noises or alarms so getting out of the truck with fire alarms sounding didn't help much.  BUT being the goofy mom I am, I held Owen and told him we would race daddy inside.  Owen thought it was the funniest thing ever and of course we won!  

We got checked into day surgery and eventually got checked into a room.  I couldn't believe how brave Owen was.  His last few visits to Children's have NOT gone well at ALL since his 6 day stay in January but today was so much different.  When the lab people came in to draw blood he cried a little but was strong.  When Mr. Mike came in to put on the EEG I could tell Owen remembered how we had told him that this wasn't the really sticky glue and although he cringed as they marked and scrubbed his head, he didn't cry or whine.  He liked putting the stickers on his chart for each thing we accomplished.  

I am not sure exactly what I thought this day was going to go like but it was definitely more intense than I thought.  We started up on 4th floor day surgery and said our goodbyes to Owen in the lower level where he was wheeled into a huge white sterile room with about 15 people dressed in head to toe sterile clothing with only their eyes showing.  Thank goodness Owen was given lots of calming drugs because this looked scary to ME but he wasn't the least bit phased.  So we kissed him good bye and had to go and wait.  That was about 8:40am and we were told it would take them about 30-45 minutes to get the IVs going and then they would start the test. The team came out to talk to us after about an hour and a half.  They let us know that Owen did really well, everything went as well as they expected procedure wise, unfortunately Owen wasn't able to talk at all which means his language and speech is still on the left side which may mean surgery is not an option.  We will need to talk with his neurologist to get all the details but we were really hoping this had moved to the right side of his brain but this is not the case. 

Since the IV they used to put the left side of brain to sleep was put through a large artery in his groin he had to lay completely still for 2 hours to be sure the incision would clot and heal so he was sedated after the procedure and we just had to wait for him to wake up before we could see him.  They finally let me in my him around noon and he didn't end up waking up until almost 1.  He was TIRED and we really had to work to wake him.  Once he was up and focusing his eyes a little bit we were able to go upstairs and meet up with Jamie in a room while Owen recovered.  We finally got home around 4, long day.  Owen was doing great this evening, just snuggling on the couch and went to bed pretty early.  He isn't supposed to run or jump for 7-10 days which should be somewhat interesting because we need to be really careful with the artery in his groin.  So we will have a relaxing few days at home which doesn't bother me one bit.  

I want to send a special thank you to Owen's speech therapist Emily who stayed with Owen through the entire procedure while we couldn't be with him.  It meant the world to us that he had a familiar face in the room.  We had numerous people that were in there come and tell us how amazing Emily was the entire time.  We always knew how special she was and this just proved it even more!  Thank you EMILY! 

I was scared that Owen would be really scared about what happened today, I can't imagine what it must feel like to have one whole side of your brain put to sleep.  To hear people talking but not have the ability to talk back.  Either he doesn't really remember it or he wasn't too freaked out by it because he seemed okay all night tonight.  

Tomorrow I was supposed to have my appointment with my doctor to discuss chemo.  However, Owen can't go to school tomorrow and I am NOT bringing him with me.  I was also probably going to the appointment myself because Jamie already had a work meeting.  They called today to confirm the appointment with me and I canceled it.  I asked if I could just talk to my doctor over the phone tomorrow or reschedule for next week.  Honestly, today was pretty draining, nothing we were going to discuss tomorrow about my stuff was really so urgent that we couldn't discuss it next week.  I just read through my whole medical report from the doctor's who gave me my second opinion.  I have already read it a few times but reading it again tonight just really stung.  Probably just because it was already such a long day but I cried and felt like I could throw up.  There is no way I want to deal with hearing all that info in person from my doctor without Jamie with me.  I think today was enough and for my own sanity I should just move my appointment to next week OR just talk to my doctor on the phone.  Tomorrow I just want to snuggle with Owen and take a nice long nap.  

Well that's it for tonight.  Thank you to everyone that was thinking and praying for us today.  It definitely helped! 

Owen's completed sticker chart

I missed Jacob!

Ice cream treat before bed.  As you can tell he is still a little drugged up.  :)

Good Night!

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