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.

Joe's Hospital Stay

Last Wednesday was one of the scariest days of my life.

That is when Joe's seizures began.

Those days in the hospital seem like a dream. Everything is fine now, but sometimes I find myself breaking down in tears thinking about some of the events of the past week.

This is what happened.

Last Wednesday was just a normal day. Joe and Sam were being well behaved. We watched our Daniel Tiger and ate breakfast. Joe made the Sign of the Cross while on the potty. Normal (for us) stuff. We have a tiny little step-stool chair that was right against the bottom of the couch. Joe was sitting in it and out of the corner of my eye I saw his arms fly out, and he made a little noise, almost like something startled him. I looked over at him and he was fine. I figured since I didn't fully see it that he was just being a hyper 3 year old.

About an hour later he was standing on a child's chair at the kitchen sink. I turned my back for one second and when I was turning back around I saw him flying backwards. His arms were flung foward. He landed on his back but seemed fine. I was concerned... I felt like something wasn't right, but again, I saw this fall out of the corner of my eye, so I figured maybe he took a step and lost his balance and fell.

I picked him up and sat him in his booster seat at the kitchen table. I turned around and even though I didn't see anything, I heard his little grunt noise again. It sounded like a cross between getting punched in the gut and being surprised. I had heard this noise maybe once or twice in the last two weeks, accompiannied by seeing him have these little spasms... but they were ALWAYS out of the corner of my eye. I bent down to look at Joe. He seemed fine. I asked him if he was OK and all he wanted was his mac and cheese.

Something wasn't right. My mommy senses were tingling. I knew something was off. But my pediatrician doesn't work on Wednesdays and I wanted him to see Joe, not a substitute doctor. I decided I would wait until Thursday to call. I consulted Dr. Google about seizures, but as soon as I read some of the stuff I freaked and closed the computer. I checked his temperature to see if he was possibly having febrile seizures. His temp was normal. I was confused because these weren't the "normal" seizures that I've seen on TV. These were just a few seconds. 

Since Joe was having these spasms and had already fallen off a chair I decided to put on some movies for him so he could sit and relax. I watched him on the couch and for the first time I saw it. It was 2 seconds. His arms flailed out, he made his gasp/grunt noise... and his eyes rolled back into his head. I knew then that something was SERIOUSLY wrong. I was kind of hoping that he was just messing around before, but it was apparent that he was not.

I immediately called Ryan in tears. "Please don't freak out, " I ordered him in between sobs, "but I think Joe is having small seizures." Of course he freaked out. I heard him run out the door and yell to someone, "I have to leave." He called me when he was on his way home and told me to call the pediatrician. I told him I couldn't because I was crying so hard. He asked how Joe was doing. The weird thing was that after these episodes, he was acting totally normal. It was kind of like a DVD skpping for a split second and then resuming play. But as I was talking to Ryan, he seized again. I didn't care what anyone said, I was going to take him to the E.R.

Ryan got home and the first thing Joe did was take his battery-operated ghost light and ask Ryan for new batteries. Ryan had called the pediatrician's office while driving home, but they hadn't called back. I told him to call them again and tell them we didn't know if this was an emergency since Joe was acting normal. They told us to take him to Children's Mercy Hospital right away.

We gathered up some stuff. Joe was walking toward me when all of a sudden it looked like he was possessed. His knees jerked to the left while the rest of his body jerked right and he fell to the floor. He laid there and started to whimper. He knew that something scary had just happened. I scooped him up and we rushed out the door. As we were walking to the van he had another spasm in my arms.

We weren't sure if we should go to the hospital that was closest to us or go to Children's Mercy. We decided that Children's Mercy would be better. We had just been there a couple of weeks prior for Sam's surgery, and Joe loves the "hopittle." In fact when I told him before Ryan got home that we might go to the hospital he started begging to go.

I kept Joe awake while we were driving and recorded him to capture if he had any more spams. He was tired, but remained awake, but with no episodes. We finally got to the E.R. and waited. And waited. And waited. A woman there with her daughter said they had been there for two hours. That didn't alarm me until he started having them in the E.R. That didn't make them pick up the pace quicker, but seeing Joe go back to coloring and walking around the animal-themed E.R. probably didn't help his case! I hovered over him everywhere he went incase he fell down. We called our moms. My mom told me she was on her way from my hometown which was 2 hours away. Ryan's mom was there in like 2 seconds to take care of Sam. My mother in law saw first hand his episodes and I saw the concern in her eyes.

Finally... FINALLY we got into an E.R. room. Right after the nurse left he had another one, so we started keeping track of how often they occured. We spent a few more hours in the E.R. A resident came in and assessed him and witnessed one herself. She started talking about the fact that he used to have reflux as a baby might be causing these spasms in his esophagus and that could be the reason for his episodes. They were going to run some labs and a CT to be sure. When she left I looked at Ryan and said, "This is NOT because of reflux." I don't like it when people have an "I know better than a doctor" attitude, but I just knew this was something in his brain. We caught another episode on Ryan's iPhone. The attending physician came in and he had another big, powerful spasm. It knocked him on his back, so thankfully he was sitting on the bed. He said, "Whoah!" afterward. These spasms were getting stronger, still very brief but it was overcoming him. It was scaring the ever living crap out of me.

The medical staff took a urine sample via catheter (which made the rest of our stay miserable because he wouldn't go to the bathroom the rest of the time there because it stung so bad) and took blood. It was amazing because he didn't scream or cry at all when they took blood and inserted an IV port. I think he was more curious than anything.We took him to get his CT scan and he did NOT like that at all. It was hard to get him to lay still.

A neurology resident came in. He was writing something down when he missed an episode, but they were coming so close together that he witnessed two others for himself. That's when he mentioned myoclonic seizures... short, brief spasms where the arms shoot out. He was definitely going to be admitted.

My mom and mother in law were there keeping us company. Nurses, admissions officers and doctors/residents were coming and going. Joe had requested a picture of a jungle to color and a very nice woman from child life services came in and gave him one and some cars for him and Sam to play with. We spent the rest of the time waiting for a room. He was having these seizures every hour... sometimes only 10 minutes in between. The attending doctor came in and told us there was an abnormality seen on the CT, but that could possibly be from him moving. They were going to do an MRI the next day.

I was scared, tired and confused. Joe never gets sick. He never saw his pediatrician between his 2 year and 3 year well-child check ups. He is always so spunky and full of life. What the heck was causing this?

I felt so completely helpless.

It was around 8:30-9:00 p.m. before we were moved up to a real room. Ryan had gone home to get some stuff and some dinner. My mom stayed with me to help care for Sam. She left soon after Ryan came back. We settled into our room. I snuggled with my baby boy on the bed. His last episode was at 10:00. He was wired so he kept whispering stuff and playing with my hair. It was around 11:00 when he finally drifted to sleep. I cried and cried and cried and hugged my Joe. You'd think that the day's events would have worn me out, but I got about one hour of sleep. I should have gotten more rest because the next day was even worse...

More later.. 

Showing off his IV port in the E.R.

7 Years Ago...

This weekend Ryan went to a friend's wedding out in Colorado. I spent one night by myself with the boys and quickly declared that those women who have husbands who work nights or are deployed or are single mothers are SAINTS. SAINTS, I TELL YOU!

I went to my mom's house for the rest of the weekend and it was nice to have an extra pair of hands to help me out. (And to take Joe when he woke up early so I could sleep in a little bit. Thanks, Mom!) Even though I had help, I really, truly missed Ryan. I didn't get to talk with him much because he was busy with wedding festivities. I was up at 4:00 a.m. on Sunday morning and I couldn't get to sleep. I just felt part of me was missing.

I don't write about Ryan on this blog as much as I should. But our love is hard to put into words. We do not have the perfect marriage. We fight and bicker and annoy the crap out of each other. Still, our relationship rises above all that.

I don't like to say that Ryan is my partner or best friend or soul mate (even though he is all those.) I can't find the right "label" to put on us. We both agree that our main goal in this marriage is to get each other and our children to heaven. This life is only a short time, but heaven (or hell) is foooooooreeeeeeveeerrrrr. But the greatest part of our marriage is that we make the time we have on this earth just so darn wonderful. We have fun, we laugh, we love. We have two boys that are a challenging delight and one saint in heaven praying for us. We struggle financially and are trying to find a place to settle, so we don't have the stability that others have. I know some people question our way of life, and that's OK. We have a love and a faith in God that has carried us through a lot. We have loving families that we have as a model of what really matters in life. We might live in a small house and not have enough money for beach vacations and remodels, but we are far richer in love, family, trust and pure joy than many others I know.

Today marks the 7th anniversary of Ryan and becoming boyfriend and girlfriend. I never knew that night I went to visit Ryan in his dorm that homecoming weekend that I'd walk out being his girlfriend. However, when I walked back to my campus house I knew I had found my future husband. Just like that campus tour guide had said to me two years before this- I found my spouse at Benedictine. Today I look back fondly on those first days of dating- meeting each others families, dreaming about the future and the thrill of holding hands, stealing kisses, and just being together. I definitely look forward to see what the future brings.

"My dearest friend if you don't mind, I'd like to join you by your side. 

Where we can gaze into the stars... and sit together, now and forever. 

For it is plain, as anyone can see. We're simply meant to be." 

-Nightmare Before Christmas

2006

2013

That Bridge

I have a post planned in my head exploring the last ten years of my life. I have moved at LEAST once a year in the last decade. During college I moved multiple times in just one year. I plan on writing more about my thoughts of moving around and finding stability once I get caught up on Downton Abbey. Oh, and after homework and stuff.

But today I wanted to reflect on a place that is very special to me- Atchison, KS. The reason this little town is on my mind today is because the old Amelia Earhart bridge... the old rickety bridge that crossed the Missouri River and into Atchison... was partly demolished today. I saw the video online and I couldn't help but feeling sad.

Moving to Atchison changed my life. I was guilted into visiting the first time. My mom and uncle took me on a campus visit to Benedictine College. I remembering feeling a pull to the campus, especially when the tour guide took us to the river lookout and said many people find their spouses here. The excitement of finding my soul mate inflamed my heart, even though I was seriously dating someone at the time. When I told the guy I was dating about my visit to Atchison and Benedictine he actually encouraged me to go there. He was probably trying to get rid of me because a few months later he ended our relationship, but part of me would also like to think it was the Holy Spirit prompting him to lead me in the right direction. I decided not to go to Benedictine, but the Holy Spirit wasn't done with me yet.

During my "Dark Years" I still made my way back to Atchison. After a very large house party in honor of my birthday, my mom took my best friend and I to Atchison for a haunted trolley tour. Even in my hungover stupor I felt drawn to this small, historical town. Eight months later my mom and I went to Atchison on Mother's Day weekend.

About a month after that Mother's Day trip I felt a pull to leave all that I was comfortable with and move to a town where I knew absolutely no one. That was so unlike me because the majority of the choices I had made was because I wanted to be around my loved ones. But God had different plans for me. I told my mom I wanted to move to Atchison, KS and work to save money to go to nursing school. After the last two years of announcing decisions that seriously disappointed my mom, I was surprised that she was in full support.

So I drove across that bridge to my new life. I found a small studio apartment that happened to be under an awesome newlywed couple who introduced me to Benedictine. I spent four years of my life driving back and forth on that bridge. I crossed that bridge to go my Uncle Dave's bedside as he was dying of cancer. I passed back on that bridge with the seeds of reversion back to the Catholic Church planted in my heart. I crossed that bridge to drive home to tell my mom I had been accepted to Benedictine College. I crossed that bridge with my new boyfriend and his brother to meet his mom, dad and sister... to the family I would be married into and to call my own.  I crossed that bridge a new college graduate, a huge accomplishment for me since I had basically flunked out of two colleges before Benedictine.

I watched the bridge as the flood waters of the Missouri crept higher and higher up its pillars. I watched the bridge as planes swooped back and forth and fireworks boomed in the sky at the Amelia Earhart festival in the summers. 

The bridge was always like a mother welcoming her kids back home. It was always a welcome sight after driving an hour and a half or after driving through a treacherous blizzard. Ryan and I have been back to Atchison only a couple of times since I graduated in 2009. The campus has grown, the studio apartment houses I lived in have new tenants, but the bridge was always the same. Now it won't be there anymore.

This is about more than a rickety old bridge. I have experienced so many changes in these last 10 years and some of the most exciting and scary life events happened when I crossed that bridge to Atchison, KS. I will forever be thankful to that bridge that carried me into some of the best years of my life.

7 Quick Takes Friday: My New Show Obession and Some Other Stuff

1.

This week I've really been slacking on my blog reading and commenting. Perhaps it is because I've been staying up WAY too late for my own good.

I blame my mother. She started watching Downton Abbey and since I know so many people who love the show I thought I'd give it a try. I didn't think I would like it because I always thought it looked rather boring.

I was wrong.

I LOOOOOOOOOOOOOOVE THIS SHOW!

It's such a breath of fresh air after watching nitty gritty shows like The Walking Dead and Sons of Anarchy. And watching the show is like candy corn... I can't stop at just one episode. The only bummer is that Ryan has decided not to watch it with me. We always watch our shows together (some couples hike together, some couples go to wine tastings... we watch TV) but he chose to skip out on this show. So now I watch it on my computer after everyone has gone to bed. So that makes mama very tired in the morning!

I am about to finish the 2nd season. I'm already dreading the 3rd season because I know of a HUGE spoiler!

2.

Sam had his first occupational therapy session yesterday for his eating issues. It went so well! The therapist is so nice and I can tell she is really good at her job! She is amazingly pro-breastfeeding and she made me feel better about the whole situation. I've always felt kind of guilty because I've always felt there is something more I could have done to get him to eat solids, but she assured me it was nothing I did and that I have done a great job by nourishing him with my body.

Sam was really good during the session. The therapist was amazed at how social he was. She said some kids don't even want her in the room. This will be a weekly thing and I am actually looking forward to see how this all goes!

3.

I read an article on Buzzfeed called 14 Books that Traumatized You As a Child. I haven't read some of the books on the list, but some of them brought back some memories! Some of my favorite books growing up was Babysitter's Club, Goosebumps, and Little House on the Prairie. I do remember being freaked out by Scary Stories to Tell in the Dark and In a Dark, Dark Room.

What were some of your favorite books growing up?

4.

Yesterday we went to my in laws and Joe played with some of the neighborhood kids. He had such a blast running around and wrestling with them. I've always been kind of worried about Joe's social skills since I stay at home with him and never go to play groups and such. But this kid is definitely not shy! I still think it would be good to get him into preschool so he can learn how to properly play with other kids (meaning: LEARN TO SHARE!!!!) and we might put him in preschool in January. He has to be potty trained but also go with out help and we aren't at that stage yet.

5.

Speaking of potty training I have a huge long blog written about our experience with potty training. I just haven't gotten around to editing and posting. I have a lot of posts planned but no energy to write them. I still don't know how you mamas with lots of littles find the time to blog!

6.

Did you hear about the chaos at the Capitol yesterday? When I first heard the news about someone crashing into barricades and leading police on a chase I just figured it was some political nut job or someone out to seriously hurt someone since the police gunned the person down. Today I learned that it was a mother possibly suffering from postpartum depression. She had her daughter in the car with her when she was killed. How incredibly sad. I don't think people realize just how dangerous postpartum depression can be. It isn't just hormones and stress and tiredness. Please pray for this poor woman's soul and her little girl who is without her mother.

7.

I was looking at this picture that was taken of our family a few weeks ago. Joe looks so grown up to me. Sometimes I'll see him sitting on the couch or at the dinner table and I just get a little shocked at how fast he is growing. Maybe it's because I have Sam around to compare him to, but Joe just seems so.... old! I can have conversations with him and he is potty trained and he can run around the playground equipment with ease. I swear it was just yesterday that I was totally helicoptering around him on the jungle gym fearing he would jump to his death! 

Have a good weekend!  Go to Jen's for more Quick Takes!