Kawisaki Disease - Part 2

PART TWO - THE FIRST DAY AT THE HOSPITAL

So Jackson and I pulled up to the hospital and I valet parked my car, the pediatrician had told me to do so. He had called the hospital to get a room for us so I was thinking I would be whisked away upstairs immediately. Not so much. After some back and forth we ended up in a waiting room with a lot of other kids who weren't so sick. Most were coming in for appointments with follow up treatment or x-rays. So no one was quite as panicked as I was. Luckily I had grabbed the iPad while home and it became Jackson's new best friend. He hadn't played with it in weeks so that made all that waiting ok. We waited for about 20 minutes before being called into a room where I gave my information, signed forms and then finally we were taken upstairs.

One of the first things Jackson said when we got settled in our room was, "Is this Connecticut?" It about broke my heart. The poor little boy had so much going on and knew we were moving soon so he was just trying to make sense of it all. We ordered some food, got some chocolate milk, met with the nurses and then waited for the doctors to see us. Jackson was doing ok during this all. He was a little irritable with all the new people poking into our room but had a decent amount of energy. The hospital had nick jr that I had on the tv and his iPad so he was happy about that.

Just getting situated in the room

Chocolate milk makes everyone happier

Jackson snuggled with me a lot that first day, I just wish I had showered...

 I can't remember exactly, but I think it was at least an hour later when a doctor came into our room. We saw a doctor and a resident who we saw often throughout the week Dr. Charles. They came in asking a lot of questions and Jackson sat playing his iPad. I went through the symptoms and concerns and they didn't say too much. When they tried to give him a check up Jackson wanted nothing to do with them. While he had been compliant to all of the pediatricians prodding he would not let them touch him. It made things quite difficult, but after all was said and done they were not so sure about Kawisaki Disease. His fever is quite low, and while he has some of the symptoms he was still in good spirits. Children with this disease are normally lethargic, and have no energy at all while Jackson played on the iPad just fine and had enough energy to hold his own during the physical. They weren't able to feel his stomach that well since he was fighting so much so it was hard for them to tell that his gallbladder was inflamed. 

They were pretty sure he had some sort of virus and now we just needed to figure out which one. They wanted to take blood samples to start testing for that. Dr. Coffman told me we should get an echocardiogram done on his heart and an ultrasound on his gallbladder area to see better if it was Kawisaki. They said they would order those for tomorrow if we were able to rule out the viruses. 

After they left I didn't know what to think. I had mentally accepted that he had Kawisaki and even though it is scary and can affect his heart, I had been so glad that they caught it early and was confident he'd be ok. Now I was confused, what virus can this be? And then will Abbie have it too? After the doctors came through they quarantined us to the room basically. Since he might have one of a dozen viruses he might be very contagious so he wasn't allowed to play in the playroom or wander the halls. The nurses had to put full on gowns masks and gloves before entering. It didn't seem right to me. 

When the nurses came into draw his blood I knew it would be bad, I just didn't know how bad. Yeah it was bad. I had to lay on top of him while 3 nurses tried to draw his blood. Between him moving and them not being able to find veins he still didn't have enough blood given after 3 pokes. They decided we'd go to a different room and get more experienced nurses. Our nurse I learned later had been there less than a year, and the techs assising her seemed young as well. Thirty minutes later or so we went in another room and tried again, this time they put an iv in his hand to get the blood. This was hard as well, but they got it. And then they left the iv drip in him so they could attach it later if they needed to get more blood. This was good and bad. Good that we could have his blood taken much simpler later, but bad in that he had this tube sticking out of his hand! They wrapped it in tape hoping that would keep him from playing with it. It worked for a while..

Jackson with his "awesome hand" he didn't think so sadly

After things calmed down I tried to get him to eat some dinner but he didn't have much of an appetite. He kept asking to go home. Nurses would come in and check him and his vitals always seemed ok, just a low fever. His rash would come and go and his eyes were still goopy and his face was really chapped. Dr. Coffman from the pediatrician office called the room to check in. I told him they were thinking it wasn't Kawisaki. He seemed upset, wondering why not. He wanted me to not give up in thinking that it was some unknown virus, have them do the ultrasound. I am so glad I listened to him.

Soon after the nurse came in and said they had ruled out a couple of the major viruses they were considering. This meant they had to draw more blood again and luckily they could do it from the iv already in place. They also scheduled an ultrasound on his liver area for the next morning.

During this time I was sending lots of texts to family and concerned friends, responding to instagram updates and comments and was on the phone with Tyler a bit. Luckily he got on his flight on time and arrived in Orlando before 10 pm. When he got to the hospital Jackson was still awake and happy to see Daddy but was not his normal self. We decided  it was best for Tyler to sleep at the hospital with him and I went home to be with Abbie who was still nursing once at night. Semra and family had put her to bed at home and were there waiting for me to relieve them of their duties. So I started gathering things to head home.

Right before I left I noticed a pool of blood next to Jackson, he had pulled out his iv. I had been watching so closely all day but the kid wanted it out. It ended up being ok because they had just drawn the blood and it probably helped him sleep better without it in. 

So I headed home and it was hard to leave my baby boy but I knew he would be better with Tyler. It felt weird leaving the hospital, weird that other people were having normal lives outside while my boy was sick with an unknown illness. It was also hard that it was a huge rainstorm and driving on the freeway was not fun with huge puddles everywhere. I learned from Tyler that Jackson had a huge meltdown a little bit later, he wanted to go home and was not calming down. Tyler slept with him in his hospital bed for most of the night and they slept alright.

Tyler's parents landed close to midnight and we had our good friend Todd White pick them up. Luckily the rain had stopped and they got to our house safely. What a tender mercy that they were coming. We chatted for a little bit and then I went to bed. Praying for my little boy all night.