I'm blogging from home! Yay! It is hard to believe that after the day we had yesterday, we're already back home. But we are, and we are all incredibly happy about it. Especially Will.
Will had a good night of sleep last night. After we got all ready for bed, his nurse gave him Benadryl again to help him sleep. He was still a little fidgety, so I crawled into bed with him. He calmed down immediately and relaxed into my snuggling arms. Before I knew it, the nurse had turned out the lights and Will and I enjoyed a night of peaceful sleep together. It was the best!
He woke up groggy this morning though. I guess that is the downside of Benadryl. He got another dose of his regular seizure medications. Despite Elmo and toys and his iPad, he stayed cranky through the morning and took a long nap in the middle of the day. As he was waking up, our doctors came in to round.
Doctor: So, when would you like to go home?
Me: I am not trying to rush it. I guess we can go whenever you tell me that Will's EEG is safe.
Doctor: Um... Will's EEG is never "safe." Even when he is on his medication.
Doctor: So when would you like to go home?
Me: Is his EEG back to where it was when we got here?
Doctor: Yes, since late last night.
Me: I've got to talk to Nate, but I think we'll be ready to go today.
Doctor: Sounds good to me. I think Will is telling us that he's ready to go. We'll be presenting Will at conference next week, and will be back in touch after that to let you know our official findings and recommendations for next steps.
After a quick conversation with my husband (during which time we decided that Will could be cranky anywhere, there was really no need to keep him at the hospital for that), I told the nurse we were ready to go. As Grandpa Harry tried his best to distract an unhappy Will and Uncle Drew brought my van back from his apartment, I furiously packed our things.
The nurse aide came it to remove Will's IV and EEG leads. I thought Will would be happy about this part, but honestly, there was no pleasing the kid. I think he had honestly had enough. After the events of yesterday and the multiple nights of bad sleep, the 9 days in the same room had finally caught up with him.
She took the IV out, he yelled. She unwrapped the gauze around his head, he yelled more. Then she doused his head in acetone to release the lead glue and he went ballistic. She removed them as quickly and gently as possible, but he was so mad and there was no doing anything right. Grandpa and I moved Will over the sink and while I held Will still, Grandpa used gentle baby shampoo and a gnarly hospital washcloth to remove the remainder of the extra super duper grip lead glue from Will's hair.
As he rubbed, we noticed that there were still marks on Will's head where the leads had been. It actually looks like Will may have had an allergic reaction to the lead glue, which may have explained the screaming that he did when the EEG techs added more gel and glue to his head. It also couldn't have felt too good to have acetone put on the spots, or to have them rubbed with a rough washcloth. It kills me to think about all the discomfort that Will has gone through this week.
We loaded our arms and backs quickly and made a fast exit from the room. We said goodbye to our nurses and doctors and while we liked all of them, we were so happy to be leaving! Will still had a grumpy look on his face, though, as we made our way through the hospital. It wasn't until we got to the open air parking garage that he let out the loudest, shrillest "thank goodness I just got the heck out of there" whoop I have EVER heard him make. He grinned from ear to ear as I loaded him into the van.
My dad and brother spent an amazing amount of time with Will, Nate and me these past 9 days. I just want them to know how much we appreciated the time, assistance, food, company and comfort as we lived at Johns Hopkins over these past 9 days. You guys really made this whole separation a lot more tolerable and enjoyable. Even though Will didn't show it today, he was sad to see you go.
We drove home as quickly and safely as possible. I stopped for ice cream at one point, though, because my Aunt Heidi told me I deserved it! Will went through periods of being unhappy, mostly because I think he's still a tired from all the medication that was pumped into his system yesterday. We finally rolled up on the house about 5 hours after we left the hospital. Nate and Otis came out to greet us. Nate picked up Will and Will let out the happiest, longest sigh ever. He just collapsed into Nate's welcoming arms and was happy. This was what he was waiting for. Home.
He didn't stop with the quiet, breathy happy noises for the next hour. As he took a bath, he splashed around. As he dressed in his pajamas (over the head!!!), he cooed. We laid him in his bed with his favorite pillow, he was so thrilled. Such happy noises from a boy who has made nothing but mad and sad noises these past two days!
He was asleep within minutes of going down. I've been in to check on him every 15 minutes since he went down, just like I always do. We're almost done unpacking and getting ready for tomorrow. Its strange, but we all seem so happy to be getting into the same old routine. There's something to be said for the same old routine. Its comfortable. It is familiar. It is safe. This is what we have been waiting for. This is home.
Thank you all for following our journey and for the notes, calls, Facebook messages of support and prayers. You were with us every step of the way, and when you're far from home and going through such a strange and stressful experience, that can make so much difference. I have so many emails to respond to and calls to return, I will get to them I promise! Thanks to my mom for all her help holding down the homefront and to our wonderful neighbor for helping to rock Matthew to sleep when both Nate and I weren't here. What a community we have. We feel incredibly blessed. Goodnight from our house! I can't wait to sleep in my own bed!