This is Landon a few hours before we went to the hospital.
I'm so frustrated that I had typed out a whole post, & saved it, then the iPad turned off and it's all gone :( Landon started having mosquito bite type bumps on his belly & back Sunday morning. By the end of the building 429 concert, he was crying when we touched his knees, limping, and the bumps were now red and all over his arms and belly. We decided to go on over to Kosair, and he developed a fever while waiting to be seen in triage. After about 7 hours of waiting room, x-rays, blood drawn,& seeing 3 doctors, we were admitted. The doctors in the ER weren't too sure what was going on, but were speculating some type of virus that triggered an arthritic type thing or a septic joint something. After about 2 hours of ( interrupted) sleep the orthopedic Dr came to visit. He thought the X-rays were good, and wasn't thinking it was the septic joint option. We then saw the residents, attending doctors, & rheumatology team throughout the day. He spiked a fever again, lost the majority of the rash, started swelling at his hands and feet, and then got the rash on his face and back. I got the impression that the doctors all believed that he had a form of arthritis that is set off by an infection or virus, but still weren't sure what virus he has. By the time he went to bed, he still wasn't able to walk.
We got a pretty good nights sleep, and woke up to the doctors again. I wonder how uncomfortable it is waking people up,and then waiting for the to wake up enough to understand where they are and answer questions? The rheumatologists came in first and discussed with me that they think we are dealing with systemic onset juvenile idiopathic arthritis. The rash and spiking fever are both symptoms and well as joint swelling. He just doesn't have swelling in his actual joints, just in the soft tissue around them. He doesn't have arthritis in any joint yet, but it takes awhile sometimes for that to show. There is no test to determine this, jut testing for anything and everything else to rule out. Since he has other swelling , they wanted to do some urine tests again to see if there is protein leaking. I'm guessing this is similar to pre-e type swelling from proteins. I could be totally off. He can walk today, and his feet don't look like he has pre-e! The rash is still very visible on his face and back, but it hasn't gotten any more raised or done the random fast spreading. Somehow the instructions to not give Tylenol all night got misunderstood. He was given some, which brought the fever down, but doesn't help establish whether the fever would spike and resolve on its own-- a symptom on the arthritis. So, we are on no Tylenol again today and tonight.
Hopefully we will go home tomorrow or Thursday morning. Landon is very excited about going to the parade on Thursday! I don't think there is a window that you can see it from in the hospital :( They did another throat swab earlier and did a finger stick blood draw and took another urine sample. Hopefully some virus will pop up on one of these! If not, I'm not sure what the next step is.
He's done great so far, only cried when he couldn't go home & when he couldn't go to McD this morning. We told him we'd go Sunday evening after we left the ER, and now it's Tuesday :/ He's gotten some great toys and play dough and paint from the hospital that have kept him busy, and we've been watching some redbox movies too.
I cants figure out uploading pictures here from the iPad,but do have some on my Facebook. We will keep updating whenever we know anything! Keep praying for my sweet little boy! We're in room 509 east is you want to join the party ;)