Boston Day 13 ... Discharged

Since the little girl with SB I wrote about last night was in the ICU, we got a new roommate in the middle of the night. At 3am, lights came on, there was a baby crying, and a mom, dad, and grandma all retelling the story of a seizure.  There was no way to sleep through this, even for Nate.

Then at 5:45am, a nurse woke me up and said it was time to go downstairs for Nate's MRI. Me: "Nate's what? Why?" She said they wanted to check his ventricles before he leaves. I said someone is going to need to explain to me why this is necessary, when he is feeling great. No one, including Dr. Warf, had told me about this. We had talked a little about possibly needing a scan the previous morning when he was having headaches, but after he started feeling better, no one mentioned it. So one of the residents came in, and first thing he said was that Dr. Warf ordered the MRI after he talked to me yesterday evening. I was skeptical because why would he not tell me that when he saw me, but if Dr. Warf wanted it, I guess we have to do it. So I had to wake up Nate, who was not happy to be woken up. On the way down to MRI, I asked his nurse who ordered the MRI and when. The nurse practitioner ordered it at 9:30 am yesterday morning, when he was having headaches. That's what I thought. Now, maybe after Dr. Warf talked to us yesterday, they asked him if he still wanted it and he said sure, why not if it's already scheduled. I'll assume the resident didn't just outright lie to me. But either way, it was an unnecessary MRI, in my opinion. I hate doing tests just cause we can.

Nate was scared to death. This was to be a really quick (like 2 minute) head scan, but it's the first time he's done this not sedated. They put things over his ears, but loud noises really bother Nate, and his head had to be in this cage-like thing, and the MRI was scary. He screamed the whole time. I was MAD. We came back to the room, and I was too mad to go back to sleep. I vented to the nurse, but by the time the neuro team rounded, I had decided it wouldn't help anything to even mention it. I'm all about advocating for my kid, but doing so after the fact just makes me difficult. Anyway, his ventricles were stable. Surprise, surprise.

Physical therapy had to come by and get Nate up and walking and clear him for discharge. I'm not totally sure why discharge totally hinges on whether he can get up and walk, since we have the wheelchair here, and he has a PT at home, but that's the game we had to play today. She came by around 10, and we got Nate up and standing, and all of a sudden, Nate was having horrible HIP pain! What the heck! Seriously? We're in the hospital for a brain/back surgery, and he first has a uro issue, and now an ortho issue! He's falling apart! At first he couldn't take any steps and the PT said we were going to have to get him "looked at" (think: consult with ortho, x-rays, etc.), but after a few minutes he wasn't having any pain and could walk (with a lot of help) to the door and back. What's the deal with the hips? I have no idea. For a few months now, every now and then Nate will complain his hip is sore, but I have put it to the back of my mind since we had other more urgent issues to deal with. I assured them that we would certainly follow up with Nate's regular ortho when we get home, and that I am comfortable with handling him and helping him walk and all that in the meantime. Sheesh.

Nate was in a BAD mood, and I totally blame lack of sleep, and ultimately the stupid MRI. He had several screaming fits today. They are exhausting. People try to calm him down, but all you can do is let him throw a fit until he's done, and then try talking to him. He happened to be throwing one of these fits when one of the doctors came around to discharge us, and in the middle of yelling Nate said, "My head hurts!" Oh lawd have mercy on all of us. I said, "Well, stop screaming and it will stop hurting!" (And maybe mine will too!) The doctor looked very skeptical after the hip thing and the headache, and he said there was no rush to get us out of there. I said yes there is. He is fine, and we need to leave this hospital. We will be staying 6 blocks away for more than a week. He will be okay. He let us go. Whew.

We are staying at a local "family house," kinda like the Ronald McDonald House, just not exactly that. It is much less expensive to stay here than at a hotel, and it was hard to get in--they are usually booked up, but they fit us in. We have a nice little room with a full size bed for me and Nate and a twin bed for my mom, with a chair and TV. We will be spending a lot of time in here for the next week! There are community bathrooms down the hall. But the great thing about this place is that it's for families with kids in the hospital, so they have a community kitchen downstairs, a "living room" with toys and movies, free laundry facilities, etc. Tonight we met a really nice family from Alabama who also had fetal surgery, but for their son who had a heart issue. He's 3.5 now and had open heart surgery this past Tuesday, but you'd never know it now. He and my kid who recently had brain and spine surgery were racing around and playing like any other kids. We ate dinner together and shared stories. Oh, and the family with the little girl with SB we roomed with the other night--the parents and grandparents are checking in here tonight too. It's a special place, and we are blessed to have it available.

Still, it's going to be a really long week. We have no transportation. My mom walked 10 minutes to the nearest store today, and it was a Trader Joe's that didn't have any of the things Nate likes--such as Jiff peanut butter or frozen french toast sticks--and they certainly don't have Diet Pepsi! :) My mom made another stop at a CVS and walked back with all of our stuff. It would be so much fun if we could rent a car and just go exploring over the next week, but Nate needs to be laying down and resting as much as possible. It will be a challenge to keep him occupied. But I'm thankful at least for a change of scenery, and a private room!