It all started about a week before Christmas when we noticed Casey John walking on his tippy toes (right foot) we thought it was odd and the Pediatricians nurse said to watch him. After John’s wedding on New Years Eve it became worse and turned into a limp so I got him to the Pediatrician the next day Jan 3. After blood test and X-Ray’s all came back normal and they said is was likely a viral synovitis. Something that is common is toddlers after a viral infection (ie. a cold).
Fast forward to Monday Jan 16. That limp had pretty much gone away and we had a normal play in the house morning since a drizzle made everything in the yard wet. After lunch Casey John sat on my lap until nap time at which point he told me his leg was hurting. I calmed him down and got him to sleep. 40 minutes later he woke up screaming and when I picked him up I could not comfort him. He told me he wanted to lay down on the couch and like that he was okay, but would scream out every few minutes. Not able to pinpoint what was wrong I called Casey and he called his dad to give us a ride to the Pediatricians. I wrapped him up and got in the car. Zachary stayed with his Grandma Kay and at the clinic the were baffled and went to get his Pediatrician Dr. Black to see him. She was able to calm him down and pinpoint the sharp pain when he was moved was coming from his left hip. Repeat blood and X-rays. Since the X-ray in Lockhart was closed Dr. Black drew his blood and sent it with us to the Seton ER in Luling (15 minutes from here).
Any time we moved Casey John he would scream and the X-rays weren’t any better. Again blood and X-rays negative. The ER doctor there gave us a prescription for Tylenol with Codeine and we were to go straight back to Dr. Black’s office first thing in the morning. After waking up a few times during the night and finally waking at around 7:30am he didn’t want us to move him from his bed. We arrived at the Pediatricians to wait while the phoned the Children’s Hospital in Austin to arrange for his bone scan. We had no idea what that would entail except he would have to be asleep to be still for it. So we dropped Zachy off at Grandma Kay’s and Grandpa’s house and were on our way to Austin.
We arrived only to fill out paperwork for his registration etc. Then they sent us down to day surgery to have his IV put in. The nurses couldn’t have been any nicer. They explained everything that would happen during the bone scan. They would start the IV and then we would go upstairs for his first scan, about 20 minutes and he would be awake. Then two hours later after the radioactive isotopes (yes radioactive) had time to set in the Anesthesiologists would put him to sleep and then they would do the second scan that took two hours. We couldn’t be with him during that one. They gave him some Versed so he would relax and not remember his IV and they ended up having to stick him twice (they couldn’t get the vein in his hand) but got it. One nurse came in just to blow bubbles to distract him and talk to him. Then we waited. He had this little bed to lay in and a TV and he could pick any video to watch and he wanted Wiggles. We waited with him until about 2:45pm when they came to get us and take us up to the Radiology area. It was about this time he became a little meanie. He was swinging at me and biting Casey. We went upstairs to wait a little longer for the Anestheologist. They tried to give him a big bear but he said he already had his bear (JoJo) and didn’t want that one. He also had Kitty and had them with him the whole time. We went into the scan room and put him on the little table – more like half a tube shaped table and they connected his IV to the sleepy stuff and after briefly fighting it he just slumped over and went to sleep, (still get watery eyed thinking about that part) and we had to leave.
That was so hard, both Casey and I got choked up. They told us to run and get some food then go back to the day surgery waiting area. Neither one of us had eaten since lunch on Monday. We both had a cheeseburger and returned to wait. Right about the time he was supposed to come out (5pm) they transferred a call to the room we were in and it was the Charge Nurse saying they had found “something” on the bone scan and were taking him straight into the MRI for a better look. Instead of waking him up and making him do all that over again they went straight over (after talking to our Pedi she said they weren’t going to do that but she got upset with them on the phone and demanded they do it then and not wake him up and make him be put to sleep again the next day). They told us it wouldn’t be until 7:30pm now and he would be admitted for that night. Again go grab some food and come back. We were back in day surgery waiting by 6pm. Right around 7:30pm they came and got us (we were they only ones in the waiting room) and said he just woke up. He was not a happy camper but was okay. He did not like that IV. We were only in the recovery room for a bit and then they moved us to his room on the 4th floor. All reports had to come from our Pedi but the on call Pedi would be in to talk to us soon, his name was Dr. Dubose.
Dr. Dubose came in and explained to use he had something medically called Avascular Necrosis (AVN). If he was older it would be the Legg-Calv-Perthes but being so young they weren’t quite sure and the Pediatric Orthopedic Dr. Shapiro would be in the morning to talk to us. No real details that night because it’s not a real common thing in little people. After getting settled Casey and I decided he should come home to check on Zach (Grandma Alebis was already here with Zach) and to get some sleep. The chair in the room folded out into a tiny bed so really only room for one, and the only way I was leaving that room is if someone knocked me out and dragged me out. Casey John was still cranky and didn’t like his IV being messed with. We watched Toy Story (each floor has a room full of videos and books to choose from). I then turned on I think Simpsons and was going to turn it off but when I did he yelled at me to turn the “toons” back on. So after they were over and I turned them off, endured some more hollering he finally fell asleep. I heard the life flight land a few times and then the nurse came in to flush his IV. I told her he had only been asleep for about an hour so they didn’t wake him (well only a little) he went right back to sleep until about ten till 5am. They had to flush IV and get his vitals which totally set him off but it was still dark enough that I finally got him back to sleep by holding his hand through his bed rails. Then about 7:15am the Orthopedics Nurse came in to see him and said were were going for X-rays soon.
We turned on Disney and waited for them to come get us. He was still sore to move (but better than the screams to move him the day before) when we went for X-rays but when we got back to his room all he wanted was his Breakfast. I called Casey to tell him the Orthopedic would be in soon so he could head our way. Casey arrived right after Casey John’s breakfast got there. Dr. Shapiro (Ortho) came in a told us more about what was wrong with his hip. He said we were likely looking at something called Meyers Dysplasia (like the Legg-Calv-Perthes) but what little folks got. On the flip side it could be childhood arthritis but that was too hard to diagnose now. He will follow Casey John for months likely years to observe. Since he is young and a male he will likely recover on his own without any complications. He could have onsets of the pain again, or not at all, he could limp, or walk normal. Only time will tell, and as Dr. Shapiro said when he left “Clear as mud now right?” So it’s something we will follow and drive to Austin for every few months, we know more X-rays, blood work, and even the MRI and Bone Scans may follow and we are not looking forward to that. Both Dr. Wiener and Dr. Shapiro agreed that Casey J is an interesting little guy (meaning he shouldn’t have this type of bone disease) but are positive about a full recovery. We go see Dr. Shapiro in two weeks and am sure we will get more information.
Yesterday at the hospital Casey J went to the Play Room (full of toys and fun things to do) and walked for the first time since Monday. They gave him some Toradol at lunch yesterday which helped for a much needed nap, drew some final blood work to check for any infections etc, and said we could go home. A few final instructions and we were glad to be on our way, especially Casey J, he did not want to stay in that room anymore! He is doing great today only says it hurts after he is in one place for a long time (ie naptime or in his carseat) we can control pain with ibuprofen and have tylenol w/codeine just in case.
Legg-Calv-Perthes (he does not have this, he is too young)
Meyers Dysplasia (not a lot out there, kinda rare I guess)
Dr. Black (our regular Pediatrician here in Lockhart – very good!)
Dr. Shapiro (Casey J’s Pediatric Orthopedic – very nice guy who we will see every 4-6 months for the next 3-4 years)
All of the nurses, doctors, interns, residents, clinical assistants, etc were so very nice and great. That made everything so much easier. I’ll post follow up information and updates as we get them and email everyone to let them know.
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It all started about a week before Christmas when we noticed Casey John walking on his tippy toes (right foot) we though...