Happy New Year! Now begins the time where I forget to put 2019 instead of 2018(like I did with this post!). The last 3-4 weeks have been frustrating, joyous, crazy, and relaxing. Kyler had his hip issue that came up and after a couple days he went to the doctor for a post ER follow up. Nothing new happened there and we continued to wait and watch his hip. Unfortunately that Thursday, he started vomiting. Like 6 times a day again. He could not keep anything but water down and he was a little cranky from wanting to eat but not really being able to. After he had thrown up a few times, I called the doctor and they said he might have caught one of the bugs going around when he went in for his ER follow up. They said they had seen a revolving door with kids who were vomiting and not keeping much down. So we stopped food and just gave him Pedialyte for a bit but he was starving for food. The vomiting got a little better but he was still throwing up after 5 days so we decided to give him some feedings via the tube to get him some calories and to see if he could keep that down. Good news he was able to keep that down pretty well. The following week Kyler still wasn't putting weight on his leg and he still wasn't back to 100% with keeping food down. After a call to the doctor again we found out that the bug was hanging on to kids for a week! I felt so bad for Kyler, here he was facing this hip inflammation issue, then got a bug on top of it that was making him puke, and both were projected to last at least 7 days! Not fun! Luckily the vomiting did stop right around the 7 day mark and by the weekend he was eating mostly normally and seemed to be doing better. That weekend brought our first Christmas celebration and the next few days after that we celebrated as well. It was nice spending time with family and friends! At this time Kyler still was not putting weight on his leg and standing but he had started to crawl on it. It had been two and a half weeks now so I began to get worried that it wasn't better yet. So on the day after Christmas we called the doctor again and we decided to get his an X-Ray of his hip again to see if the fluid had gotten any better. We got in that afternoon and all the fluid had gone which was a good thing. So we began speculating that maybe he was scared to try to put weight on it after what he had felt before. Well within a day, he was starting to stand on it some! We went back to the doctor the next day and got his RSV shot and one of his vaccinations(yay for being done with those until he is 4!) and then we had physical therapy at the pool. We thought that might help since he had just began standing on it again. At the pool, Kyler and I got there a bit early and while we were waiting we got in to play a little. A group of ladies who were there came over and offered Kyler some rubber ducks to play with. Since I like to make him work without him knowing it, I spread the ducks out along the barrier and he stood up and started cruising along the cement barrier! I was super excited! After Shayla got there we did some different games with him and he did some more cruising and even stood unassisted and took a step or two(not knowing we had let go). I was SO relieved. I had been feeling very frustrated by his set back in walking and how long it was taking to get back at it. Friday we got to just hang out and then Saturday the big kids and I went with the cousin crew to Wichita to the Urban Air Trampoline Park. It was a lot of fun and it was great spending time with them all. When we got back we got to see Mike's brother and his family and got to enjoy them for a few days while they stayed with us for their visit. The kids had a BLAST playing with their cousins and we had fun just hanging out with everyone. Kyler was having fun showing off for them and really enjoyed his Uncle Sean! Life has been pretty boring since they headed back home! Today we had Kyler's ENT appointment with a new doctor out of Hutch. We dropped the big kids off with Grandma Colleen and headed to their office in McPhearson. When we got there, I found out I forgot to print off the medical history for Kyler like I had planned on doing. Luckily I have it on a document and I was able to pull it up from my phone so I started copying the information over! Kyler's ICD team(local therapy) had already sent the multiple readings from their ear checks so we just talked to the doctor about why we were there. We explained that he hasn't had infections really but they were constantly reading flat and that his speech was starting to get really delayed. After looking in his ears, he said they looked good but we would have the audiologist check him over and go from there. So we were taken to a different room down the hall and they hooked him up to a machine like ICD uses and it showed some movement(of the ear membrane I think) but not as much as you should see. Then they did a hearing test with another machine and found that he was only hearing 1 of the frequencies(I forgot to ask out of how many). The audiologist said that the sound you get from putting your head underwater is what Kyler is hearing. I mentioned that when Gunner had his test done that he was only hearing around 40% and she said that was close to what Kyler was hearing as well. She thought tubes would be helpful for him. She also took quite a bit of interest in Kyler's genetic mutation and apparently taught a class on genetics somewhere at some point. Said she noticed his wide set eyes right away and thought there was something there. I'm not sure what to think about her completely, she said Mike has the same wide set eyes but not as pronounced but the genetics team said Kyler's is unique from Mike and I's genes so I don't know about that. He definitely looks like a Moran though! She also talked with us about family history of hearing and after hearing about that, thinks she wants to follow Kyler to watch for anything related to the family history of hearing. I didn't mention that KC is following him for that too but I figure eventually KC won't follow him and he will still need to be watched by someone more local. Once we were back in with the ENT, we talked about when to get the tubes done and we shared that he has a surgery coming up at the end of the month. He said we just want to avoid that same week. So we scheduled it for the end of next week. Then the nurse came in wanting to know more information about his Chronic Lung Disease. After explaining that his only has one functioning lung, she said he would need to have the tubes done in a hospital and not in the clinic and we would need to find a different day when that could happen. So we asked about trying to coordinate with Children's Mercy and having them place the tubes when he is up there at the end of the month. We thought it might be better to only have to have him put under once. Also, not that we don't trust the ENT to put him under for the procedure, we both just feel better about the doctors at CMH since they are so familiar with Kyler and his special set of issues. So we sent a message to our team in KC and the ENT's office was going to call them tomorrow and see if they can work it out. If not, then we will most likely wait until after his surgery in KC to do the tubes. After getting home and just snuggling and relaxing, Kyler had a speech session with his new speech therapist Amanda. He is now going to be getting speech every week and then working towards having PT every other week.Since he is needing speech more frequently and his feeding issues have gotten so much better, we switch to a new therapist who had more availability but still has some feeding background for support. Shayla will still see Kyler frequently until he gets back to where he was before the hip inflammation but then his time with her will decrease. The kids and I have a few days left before school starts up again. It has been so nice being home with the kids and just relaxing and I have done a pretty good job of not thinking about or worrying about work much over break. I do plan to get in my classroom and do some organizing and planning that will make me feel better to start back on Monday. Hopefully we will hear back on if the ENT can coordinated with CMH for Kyler's tubes by the end of the week. We hope everyone had a wonderful Christmas and New Year!
0 Comments
Leave a Reply. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
Hospital Visiting Hours and Rules
9:00am-7:00pm 8:00pm-9:00pm Archives
May 2020
Categories |