Joe's Hospital Stay Part 2

The first part of our ordeal can be found here.

Our first night in the hospital was spent with me crying and replaying the past day's events over and over again. Ryan was asleep on the couch with Sam and all I could hear was their rhythmic breathing. I kept looking at Joe's heart monitor, hoping the pattern of his beating heart would put me to sleep.

The morning came before we knew it and it was actually a good couple of hours. Joe got some breakfast and played with his animals. His two favorite people came- Grandma Mary and Memaw. We hung out in the room and watched cartoons. We also had a suprise visitor- Olympic swimming gold medalist Kaitlin Sandeno from the Jessie Rees Foundation was visiting kids in the hospital and she came by with a Joy Jar full of toys for Joe. She brought her Olympic medals and we go to hold them, which I thought was pretty nifty. She was so nice and it was a wonderful distraction from what was going on.

FOOD!

Kaitlin Sandeno and Joe

Showing Joe her medals

Soon after they left, Joe's neurology team came in. We had already met one of the pediatric neurologists and she had warned us that this "team" was quite large. She wasn't joking! Dr. Cruse was the lead doctor and there were about eight other attendings, fellows, and residents with him. I felt like I was in an episode of Grey's Anatomy. I explained (for the 1000th time) what had happened the day before. Strangely enough, Joe had not had a single episode. Dr. Cruse told us that they were going to schedule an EEG and MRI for later that day. Even though these seizures were scary, we actually wanted him to have an episode later during the EEG so we could get some answers.

It was shortly before noon when the nurse told us that Joe would not be able to eat or drink because he would have to be sedated for his MRI. They didn't have an exact time which was frustrating. They also informed us that his EEG was going to be at 2:00. It was around that time that Joe started getting fussy and asking for lunch. We tried our best to distract him with his toys and movies, but he was getting grumpier by the minute. His two nurses came in to take blood for testing and quickly discovered that they were going to need some help because Joe is so strong. I'm not just saying that as a proud mama... I mean this kid is bionic. It was torture to see him held down and screaming while they took blood. They noticed his IV port was kinked, so they had to take that out and re-do it and hooked him up to saline solution. It was hell.

After that was all over, Joe was in quite a mood. He kept screaming and crying for lunch and water. He kept complaining that his penis hurt (from the catheter from the night before) and he was so uncomfortable from holding in his pee. He also kept complaining about his arm hurting. It was then my mom noticed that his arm with the IV was extremely swollen. The IV had burst through his vein and the saline solution was spilling out. This isn't harmful, but it just made him arm look like the Michelin man for the rest of the day. They came to take out the IV, which of course freaked him out.

By that time Joe had hit his limit. He was very tired, hungry, thirsty and afraid. We asked if there was any way we could go down the EEG early because he wanted to sleep so badly. (He wasn't allowed to sleep before the EEG because they wanted him to sleep during the EEG.) No such luck there so we spent the next hour or so comforting Joe, holding him, taking him to the play room and distracting him with walks. It was heartbreaking to see him in such pain and there was nothing I could do. I was so afraid that all of this was going to be useless and we were just torturing him. My mom and Ryan's mom were getting ticked off and asked the nurses if they could get a more definite time for an MRI so maybe he could eat. No one knew anything.

Shortly after the IV debacle... you can see how red his cheeks are and the sweat in his hair.

Finally it was decided that since he hadn't had an episode they were going to do a different kind of EEG. Instead of taking him down to the EEG lab they would bring the equipment up to his room and do a continuous EEG (the one in the lab would have only been about an hour and half or two hours) with a video monitor. Because of the change, they said he could sleep, and while we were waiting for the EEG guy to get upstairs he fell asleep in my arms.

I was hoping that maybe he would be so tired that he would sleep through them putting the electrodes on his head. Of course I was wrong. And of course the guy had to call in a guy to help hold him down. It was 30 minutes of him measuring his head, marking with a marker, "gluing" electrodes on his head, using a little tube shooting out a blast of air to dry the glue, poking a hole in the electrode and then filling the little hole with pink goop that would be a conductor for the electrode. Then the technician wrapped his head with some bandages and put a little hat on. Poor Joe kept screaming "GET ME OUT OF HERE!" and "STOP IT, GUY!" Finally when it was all over Joe didn't try to rip off his new hat. I was so afraid that all the sweating would cause all the electrodes to fall off, and the technician was, too, but everything looked OK when he turned on the machine.

The technician gave us instructions on what to do if he had a seizure.. push a red button, speak into the camera and describe the event, then write it down. Because Joe was hooked up to this machine he couldn't really get out of bed. And because the camera had to be on him at all times, if he even moved to the other end of the bed we had to call a nurse in to move the camera via a computer command. The technician said that once they recorded an event then he could be unhooked. He said he could be hooked up for 5 days. I think my brain shut off for a few minutes so it wouldn't have to process that information.

This shows the bandages he put on after he placed the electrodes

My little gangsta... Thank God he never tried to pull it off! You can see the EEG machine in the background with the camera on him

The electrodes were bundled in this bag, and connected by a 4 foot (or so) cord that attached to the machine

The technician left and the nurse came in with that "I'm so sorry, but you won't like this news" kind of face. She said they still weren't sure when the MRI was going to be, but it would be until at least 9:00 or 10:00 that night. I was like "Oh hell no." We were NOT waiting that long to get him food and water. The EEG guy was 45 minutes late... who knows how late the MRI could be. The nurse completely understood and went to get him some food right away.

With a Lunchable and Sprite he was in a MUCH MUCH better mood. It was still frustrating that he had to be confined to the bed, but we got him some toys and more movies. Ryan and I got some dinner. My best friend's mom and step dad stopped by which was an awesome surprise. They brought some toys and books, which Joe was thrilled about. Soon after they left Ryan's sister and her husband came by to visit Joe. He was still in pain from not being able to pee, but for the most part he was back to his happy self. He was handling it all so well. The nurse also came in to chat (I haven't had the chance to mention how flippin' amazing the nurses were!) and she assured me that Joe would NOT be hooked up to the EEG for 5 days. She said he would have an MRI sometime the next day and they would be taken off before then. I could feel the stress and anxiety over that just float off my shoulders! The rest of the evening was low key and relaxing (as relaxing as being in a hospital can be.)

Joe still hadn't had any seizures. I absolutely hated thinking this, but I wanted him to have on while on the EEG. I wanted answers. What had happened the day before with seizing every hour was NOT normal. I was so afraid they'd just send us home with a big question mark hanging over our heads. We got a call from our awesome pediatrician and he assured us that even if he didn't have a visible seizure, they could still pick up an abnormality on the EEG from him resting. I was hoping and praying for answers.

The next day we got them... just somewhat in an unexpected manner.