Kyler's last couple of weeks have been exciting and scary. Kyler had been boycotting walking and decided he was finally ready to walk! It was last weekend and Kyler was walking with sister when she let go of his hand in the middle of the room and he just kept walking! He realized she had let go and he dropped to the floor shortly after that! Next thing we knew, he had crawled over to the couch and used it to stand up. Then he let go, turned around and just started walking! I was so excited that he chose to walk and we were not having to coax him to come to one of us or a favorite toy! Since then, he had been walking pretty frequently! On the 7th Kyler went for a weight check and he had gained .1 of a pound. I was happy with this gain because he has been eating for a month now and he didn't lose weight which is great considering most kids lose weight when weaning to eating fully oral. Well then on Monday I received a message from the GI clinic at CMH. They wanted us to increase his tube feedings by 2 oz per day because he isn't gaining enough. I hadn't talked to them about him not getting any food via the tube yet so that night I wrote back to them(messages are through the online patient portal). I let them know that he had been eating orally for a month and that I wasn't ready to put him back on the tube feedings since he had gained some(even if it was just a small amount). I let them know we would try to get extra snacks in but I wanted to give him another weight or two before going back to tube feedings. I hit send and anticipated they would not be happy with us for cutting his tube feedings since the last time we met, they had said to not cut anymore than 50%. I got a response on Tuesday and was surprised by a positive response. They were glad that he was eating orally and wanted to know how many calories per day he was getting. They also wanted to keep following his weights. Around this time Kyler started getting a little cold and cough. He had a ton of nasal drainage and it was starting to turn yellow. A couple of the nights he was coughing so much and I could hear him breathing from my bedroom! I got a little worried and ended up pulling out his monitors to check on him. After suctioning his nose and not really getting much of anything, his oxygen was reading at 99% so that was great! Kyler seemed to be getting better as the days passed. He stopped coughing, his drainage stopped(and turned clear when it did drip) and he seemed to be in a good mood! Then on Saturday afternoon he was playing and just started screaming out of the blue. I thought he had stepped on a staple in the carpet(we have recently just gotten our floors done) or something like that but I didn't see any marks on him. He was really upset and his cry sounded like a pain cry. I held him and he was grabbing at his leg. He calmed down some in my arms but was still crying as he quickly fell asleep. I assumed he must have just been very tired. I laid him down and he slept for a couple hours. When he woke up he was screaming in pain again. I knew something wasn't right but didn't know what. I changed his diaper and he was shaking in pain when I moved his leg. I started making plans to take him to urgent care. I thought maybe he had somehow fractured his leg, or something. I couldn't think of how he had hurt it, he had been playing quietly, he hadn't fallen, he was fine right up until he started screaming but I knew in my gut something wasn't right. Mike was already at work so he headed back to town to meet me at urgent care, my dad met me there to get the big kids, and we got checked in. Once there, they took x-rays from the hip down after we explained why we were there. The X-rays were sent off campus for reading and the report came back that there were not any fractures or issues with his bones. That was good news but we didn't know what was wrong still. He was presenting fine when he wasn't moving his leg so when you looked at him you couldn't tell there was anything wrong. We were sent home with instructions to give ibuprofen and watch to see if he got better. If he didn't we were to take him to the ER because he might need a MRI or other test done to see what was wrong. We came home and started the ibuprofen and Kyler wasn't doing any better. Eventually I put him to bed and he slept all night. When he woke up in the morning he was trying to sit up and couldn't. He was in pain again. I had a message from his physical therapist that she could come check him out if we wanted(which we did). She came over and looked him over and thought it was something with his hip. She suggested taking him in to be checked since he was clearly in pain. So we made arrangements for the big kids with my sister and mom, and then headed to the ER. Once there we shared the copy of X-rays that Med Express had given us to give them if we needed to go in. The ER ended up taking their own to make sure they had the shots they needed and then the planned for an ultrasound and blood work. Much of the time between the tests, Kyler was fairly calm and wanting to be held. He did not like them putting an IV in or messing with him! While we were waiting for results the doctor came in and said that if he has an infection, the would send us to Wesley because they wouldn’t treat that here. We asked if we could be sent to KC if he had the infection since that’s where his team is. We had a 90 minute to 2 hour wait for the tests’ results. Kyler ended up falling asleep and when the doctor came back in he said it wasn’t looking like he was septic(great news) but he was still waiting on the final results of the blood work. Kyler did have a small pocket of fluid on his hip though and the doctor needed to talk to the orthopedic doctors on what to do. When he came back in he said that the fluid may need to be cultured and the orthopedic doctors here weren’t comfortable doing that and Kyler needed to be at a pediatric hospital. Then he said he had contacted KC and they had a room for him and would keep him overnight for observation and possibly surgery. We weren’t allowed to give him anything to eat or drink incase KC decided to do surgery right away. He asked if we wanted him transported in the ambulance and we chose to drive which he was fine with since Kyler wasn’t in super bad shape. They started gathering documents for us to hand over to KC for a “private” transfer and the nurses took vitals and did some finishing touches before we were sent on our way. We left with copies of their labs and reports and a disc of his ultrasound and X-ray images. After a stop at home to get a bag packed and supplies for a couple day stay, we headed East. The drive there seemingly took forever. I was nervous about Kyler possibly needing the surgery to drain and culture the fluid on his hip, nervous that it was going to turn into an infection and turn septic, and just already exhausted after being in the ER all day. We finally made it to Children's Mercy and got checked in. We were the only ones in the waiting room so we got taken back really quick. After getting vitals taken we were taken to a room and waited. The nurses came in and we shared the files they had sent and they said the would get them to the radiologist and we waiting for a doctor to come in. The doctor came in and tried to move Kyler's legs around to assess him and Kyler was beyond done. He cried anytime they came close to him. Eventually he settled enough they could move him around. That doctor said they would consult with the orthopedic doctor on next steps. The orthopedic doctor came in and said that they looked at the labs and everything and that we would be going home. We were so confused since Salina had said they were keeping him overnight. When we asked the doctor he said he didn't see any reason to keep him since he was only showing 1/5 symptoms of the serious infection they needed to watch for. So now we had to wait for them to verify that was what was going to happen and then get discharged to come back home. We are glad that it wasn't more serious but really frustrated that Salina had sent us to KC and told us they would be keeping him overnight. I don't know what happened or why we were told that but that wasn't what happened. Last night we were pretty upset by the end, confusion, exhaustion, worry, and stress all played apart to being so upset over having to drive to KC for nothing. Another part that added to our frustration was that the doctor that sent us to KC was the one we saw when Kyler was puking up brown stuff at 4 months old and insisted that it was his immunizations causing it, so we didn't have a great first experience with him and now this. That being said, I will drive to KC a hundred times over if it is what is best for Kyler. I have since heard from friends who know how our hospital works and they think perhaps there was miscommunication on terms used and procedures where our hospital thought one thing was happening and the other hospital meant something else. So now we are at home and have to watch for increased pain and a spike in fever. If he spikes a fever we have to take him back because that would be a bigger indication of infection than the fluid on his hip or pain. We are to rotate Ibuprofen and Tylenol to help with pain. The inflammation should resolve on its own within a couple weeks. Kyler was diagnosed with Transient Synovitis which the cause is unknown but usually affects boys 2-8 and usually follows a respiratory virus or viral infection(like the one he had at the beginning of the week). I am hoping that he recovers quickly so this doesn't put a halt to his physical therapy progress since he just started walking. The doctors did tell us that he now has a 20% increase risk of getting this Transient Synovitis each time he gets a cold. So far this morning he hasn't gotten worse and isn't spiking a fever but he is unable to put weight on it still and is now congested again. He is sleeping quite a bit more than his normal but that might be because he can't play like he normally does. Monday's are PT days but we have cancelled his session to give his hip rest and to try and not aggravate it anymore than it needs to be. We will have to see his PCP doctor in a day or two for a check up as well. Thank you all for prayers said for him!
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