Risky Business

*warning: this post is a little graphic and contains multiple mentions of body fluids*

We took Cole out last weekend. We were brave, and decided to venture out and get some much needed social interaction. We took a risk. Every day we have to make decisions based on risk. I practically bathed Cole in anti-bacterial and we set off.

We had a great time at the Purple Day festivities, so much so that we were feeling good about ourselves and decided to be brave again the next day and take Cole to church for a little bit. However, in those short 45 minutes, he was exposed to some sort of illness. Another one of our everyday-life-experiences turning into life-threatening-dramas.

Tuesday, he started having diarrhea and did not want to eat much. This has happened other times we have gone to church or public places, where he touches things and then puts his hands in his mouth no matter how many times I wash them or tell him not to. I wasn't worried.

Wednesday, at 1:00 am he threw up, in his bed. It was everywhere, even in his eyelashes, then he proceeded to puke again on our carpet downstairs while I was trying to clean up the mess in the bedroom. He was having clusters, so we gave him Diastat and we all piled in my bed around 4:30 am. The entire family slept through two alarms for Daddy at 5:30 which, if you know me, is a BIG deal-Brian, not so much. Wed proved to be a hard day for Cole, with multiple clusters, high fevers (highest recorded was 103.8-this was 30 min after a tylenol suppository) and a 49 minute status episode which took Diastat, Klonopin and Versed to stop. His O2 dropped to the 60s, but we were thankful that he didn't have another 10% episode. My entire house smelled like death warmed over, something that even Scentsy can't mask. All the while, he still had diarrhea and no appetite, but I was giving him fluids through his g-tube. We knew from previous experiences that the hospital really could not do much for us except monitor him. After talking with our doctor back in Utah, we decided to stay home. We've done this before.

Thursday he seemed much better. He even ate a little bit, but it came right through him. We had company coming into town and he was lively and excited. Once they arrived, he turned into the happiest kid ever. I actually teared up when he was playing with his cousin Katherine. He rarely gets to play with other kids and he was having such a good time. No vomit on Thurs and the highest fever was 101.5, so I thought we were on the mend. Friday proved otherwise. He kept on having massive episodes of pure liquid diarrhea. 5 times in 3 hours. He was passing bile through his stool, even the long, green kelp-like strands that hang out in your intestinal tract. Even pedialyte through his tube would come out 20 minutes later. If any of you know c-diff, that is what our house smelled like. His speech had been impaired since the big seizure on Wed and was not bouncing back. He had not had a wet diaper all day. I was starting to get worried about dehydration and consulted with our doctor in Utah. She validated my concerns and told us to go in. I knew he had not really had solid food since Monday and was probably in need of some IV fluids. It can be very dangerous for keto kids to be dehydrated, as they can go into ketoacidosis (basically ketones become poisonous).

So, we had to schedule Daddy to come home (which takes an hour) and then pick him up at the metro since there was not a train running at the time. Drive over to the train station, get the GPS out of his car, (no way we could have made it otherwise) and then drive into downtown DC. I got to see the cherry blossoms on the drive-by. They really are as beautiful as everyone says. My grandparents would love them. Did not get to stop and take pictures, sorry! Our hospital experience was not so great. See my review. On top of all of this, Cole decided to be friendly and share the love.

I started feeling nauseous in the ER, but with my gallbladder issues I was not too worried. Besides, hospital food always tastes awful. My back was killing me and I thought I might be having a kidney stone, a long time nemesis of mine. Shelved the pain and focused on trying to get my boy admitted. Had a terrible time sleeping on Friday night, but did not worry too much about it-we were in a hospital! During morning rounds, I was standing outside the door with the doctors, discussing Cole's case and I felt an overwhelming wave of nausea. Now, I am a pro at throwing up. I did it every day for 5 1/2 months straight while I was pregnant. I learned how to puke while driving, while in a meeting, on the phone, just about anywhere and keep going about my business. I just held up a finger and told the doctors, "Excuse me, but I am REALLY nauseous. I will be right back". I proceeded to walk into the bathroom, lose my awful hospital cafeteria dinner and then walked back out to the conference. I had watery eyes and probably looked like a zombie, but I told them to carry on. The vertigo kicked in later.

I continued to throw up throughout our stay and the rest of the day. I could not even hold down ice chips or water. Oh, dry heaving, my long lost companion-why did you come back for a visit? Needless to say, it has been awful. I have no strength and have lost over 10 pounds. Not a healthy, recommended way to lose weight, but definitely effective. I have been drenched in sweat from fever, enough that it is making my hair curly. The hot, cold, hot, cold is not particularly enjoyable. So sorry Facebook friends, I didn't update when we were released because I could barely hold my head up! I will say this though, I am so grateful for our church. It is an immediate built-in support system. With a few texts and one phone call on Friday before we headed out to CNMC, we had everything taken care of. Someone came to walk my in-laws dog, as they were out sight seeing. There have been phone calls, e-mails and text messages checking in on us. Our bishop was preparing to go to Dubai for work the next morning and was going to come into town and see us. We waved him off, but were touched that he was willing when he was obviously so busy. People have brought meals, came to visit, and offered to do anything that we needed. We found out that Cole did get sick at church, through people reporting that this particular illness had been floating through our ward. At least we know the source this time, but doubt it landed anyone else in the hospital! People even offered to come into town and pick me up, to bring me home, when they heard I was now sick and discharge was being slow. I am glad that I did not take them up on that offer, because I threw up three times on the way home. However, I know that they were sincere. One friend even offered to drive 9 hours to come and help me out. There were offers to take me to the ER since obviously Brian had to stay with Cole. This is just how we are. We are programmed to pull together and help each other out when needed. Even if it is not a medical emergency, it is just part of our culture. We have been here for a month, and these people are practically strangers, but we immediately are a part of a family; and I know that it would be exactly the same any where else in the world that I moved. For someone in a new town, new state and pioneering through a new hospital, it was a comfort to me to have something so familiar.

Cole is still sick today. Lethargic and weak. Still has delayed speech. Still has diarrhea. I really, really do not want to have to take him back to the hospital. I can finally stand up for a short period of time and have kept down my first bit of food since Friday. Miraculously Brian seems unscathed.

So, do we take a risk and continue to expose Cole to the outside world? It has smacked us in the face so many times that it just feels safer to never leave the house again. Every decision that includes passing the front door will have to be weighed, but I can't be a hermit forever. I just can't. I can't control whether people take their sick kids into public places. I can't control what the weather is going to do on a certain day, to affect Cole's seizure activity. There are a million things that I can not control. P.S. for a control freak, this has been hard to let go of .

It all boils down to the risk. Is it worth it? All for a sense of normalcy? Most of the time, yes. Other times, I am not so sure.