We have made it back home!
Max was discharged directly from the PICU on Monday evening. Once every one was on the same page about his abnormal movements, there was really no reason for us to be in the hospital. Max got over the stomach bug fairly quickly, but just needed the extra help to get through the after effects of it all.
Of course, George was over the moon to see him. I had George on his leash to make sure he didn't jump on Max with excitement once he got home, but it wasn't even needed. He went over very gently and kissed his boy and nuzzled his long nose into Max's lap. Any time we would leave Max's side George would move right in to make sure he was still there and taken care of.
Max slept when he got home, and all day yesterday, and through the night. Although, last night he really wanted a cuddle with one of us, so one of us was with him most of the night to keep him comfortable. He woke this morning with a smile, and has been upright for most of the day.
Monday night was the only Christmas party I had planned on going to this year. It was with the group of moms I meet with once a month. We each have children with significant needs. Being with my friends after such a rough week really made me realize just what a special group of people we have here.
While I was sick, my sister and brother in law came to get me to ensure Steve was able to stay with Max. They didn't need to get sick, certainly with a stomach flu, but they were there before I could object. They took me home, and made sure I had enough vitamin water to rehydrate a football team. And saltines, which I still can't bring myself to eat after an unfortunate morning sickness episode when I was pregnant.
I had these same "supermoms" bring me dinner, Abbey dinner, flowers, and chocolate...always chocolate. Each one of them checked on me, whether by bringing and leaving food and drinks on the front porch, or by emailing or calling. Each one of them, having children who couldn't get sick - just as Max can't get sick, making sure we were okay, and offering to help.
The next day my friend Susan, straight off an airplane, went up to the hospital to let an exhausted Steve sleep. She sat there, ready to wake Steve if needed. Steve slept and recharged his energy. She got home in the very early hours of the morning, having let Steve sleep all night. Then came and got me so I could get back up to the hospital once the horrid bug made it's way through my system.
While I was being taken care of at home, doctors and nurses who know Max were checking in on him and Steve. There is a system in the hospital which dictates who is "in charge". Because Max went in through the ER, and admitted to the floor, the doctors on the floor were "in charge", until Max got to the ICU, then those doctors made the decisions. Still, each of Max's doctors came to check on him. His pediatrician, metabolic doctors, nurses he's had before, his GI doctor, his surgeon, his wheelchair rep. all came as soon as they saw or heard that Max was there. None of them had a lot of input as far as treatment for this stomach bug or the shaking was concerned, but each stopped to make sure he was okay, and to make sure we were okay. And yes, his neurologist who was still brushing the sand off his bags from vacation called as soon as he heard Max was in the hospital.
This is why we have all of his doctors and specialist at Children's Hospital. Because in their extremely busy schedules, and when they have their own lives and children to get home to, they stop, and they check on our boy. They make sure he is okay. They care when it's not expected of them.
Max got letters from many of his friends at school. This wasn't done at school, but each of his classmates went home and asked if they could send a letter to Max so he feels better. His teachers were checking on him, and his therapists too.
And even George was taken care of...and little Olive too. George's trainer was amazing to come over and walk George and Olive, and play with them. Our neighbor helped with getting keys to her to be able to come and go without much effort at all from us.
There are times when we get out of the hospital and wonder, how do we do it? How DO we make it through these extremely tense situations time after time, and not end up crazy? When I stop and think about it, it's really pretty simple...we're not doing it alone. We have people here who care for us, and step in to help in any way they can.
And then there's you. Family and friends who read about Max and pray, and spread the word about our little guy. Your words of encouragement bring a sting of tears to my eyes every time I read them. In the dark hours in the isolated world of the PICU, I read that you're up too thinking of Max, and hoping he's better soon, and it calms me. It makes me feel that we can go on. Everyone else has our backs.
Yes, I'd say we have a pretty good village of family, friends, therapists, doctors, nurses, receptionists, and 2nd graders. We all make it happen, and then our boy gets better and he gets to come home. That's how we do it.