These last couple of weeks have flown by. On the 14th we traveled to KC to meet with the feeding team and have Kyler evaluated. We meet with five team members for the feeding team. The team included a dietitian, nurse practitioner, speech therapist, occupational therapist, and psychologist. We started with reviewing Kyler's history and concerns. Next we got out some of Kyler's food and let them see him eating. He started off good with his favorites of cereal puffs and then we moved onto purees. I really didn't think he would even open his mouth for a bite. Then I was surprised when he did open and take a couple bites. The team brought up his coughing since it can be a sign of aspiration. We talked about how he coughs fairly often and it isn't only with eating, it is hard to say if it is aspiration or not. After watching him eat and seeing him turn away from food, the team thinks he is refusing to eat as a way of protecting himself. I had asked about if it was behavioral and he had just figured out that the tube feedings are less work(for him) versus the work he has to do to eat orally. They didn't feel like that was the case. We also talked about his nutrition plans since he was going to be turning one and needed to come off infant formula. I shared about wanting to go to a blended diet and was thinking about a product called Nourish, which is a commercially available blended diet. They agreed with putting him on that and had said they've seem success with kids with reflux on a blended diet. I shared that I have been wanting to have him try it since around 6 months and at that point they may have thought I was a little crazy! The speech therapist did some things with Kyler including trying to feed him. As she worked with him, she determined that he has low tone in his mouth and even though he is moving his tongue more, it appears to be sensitive and not moving as much as it should. These weaker muscles and lower movement make it difficult for him to eat appropriately. She also said that he is nipping at the spoon instead of taking true bites. This made perfect sense to me with how he manages his pacifier and chomps on it versus really sucking on it. After that they recommended that he get weekly feeding therapy to work on the low tone and oral skills. He is currently getting services 1-2 times a month but her schedule is pretty packs and since it is summer, we were given the option to go to another town to get him in for some extra sessions. We ended up leaving that appointment with plans to get Nourish ordered and then get him signed up for extra sessions for oral therapy. We ran into a little snafu with the Nourish when I found out that it will take 3-4 weeks to get it approved through insurance and shipped to us. This was a bummer, I didn't think it would take that long. So after finding that out we explored our options. The first was to order and pay out of pocket for the first month and hope that we could get paid back from insurance. This we found out would be around $1,000.00 for a months worth and there wasn't a guarentee that we could get refunded after insurance approved it. So we went with our second option which was to leave him on the infant formula until we get approved for the Nourish. After that we headed back home to get ready for Gunner's preschool end of the year performance. He was so proud and he insured us that he would actually sing this time! He did good and got to end with a song about dinosaurs!
The rest of that week zipped by, with it being the last week of school things were pretty crazy. The week ended with the last day of school but more importantly, it was Kyler's 1st birthday! Our little warrior is now 1 year old and happy as can be! He is moving around much quicker and so super close to crawling. He is doing a lot of babbling and sometimes it sounds like he is really trying to say some words(like Bubba). I have been getting him to say "Bad Bad Boy" which he thinks is pretty funny! We had a smash cake for him in the evening and it was fun watching him do that type of celebration like many other babies! I wasn't sure how it would go and if he would gag himself by trying to eat some but I wanted him to get to try it. He did great. He put his hand into the frosting the second I set the cake down and then explored it on his hands a little bit. He wasn't sure what to think about it and seemed pretty curious. I gave him a little taste of the frosting off of my finger and then encouraged him to take a bite. He then started putting some to his mouth more. Before long, he had frosting all over and the red frosting on his lips made him look like the Joker from Batman! I was curious what he would do with the cake(not just frosting) so I flipped the cake over and he dug into it. He even tried to bend down to take a bite but he couldn't bend far enough down to get a bite. After he was done I carried his highchair(with him still buckled in) to the shower and hosed them both off! He then got dressed and got to play with his new puzzles from Aunt Robin and his new monster machine from his nurse Kalisha. He really loved both of his new toys and they are both perfect to help him work on his next milestones! His birthday had me a little emotional. As I held and rocked him I could help but shed some tears, both happy and sad. I am so happy that he is thriving and we have made it to one year. I am happy for all of the milestones he has hit and the obstacles he has overcome. I am happy for the joy he brings our family every day. Then I am also sad that my little baby is getting bigger, he is now long enough to take up my torso. I am sad that my last baby is leaving the baby stage way faster than I want him to. Then I am happy again that I am able to have these thoughts and feelings when a year ago, I wasn't sure I would have these moments. The weekend arrived and after tinkering around the house some, we met up with Aunt Miranda and Grandma Val for some swimming/tanning. The water was too cold for Kyler but he enjoyed playing with toys in the shade. Then we got to see Uncle Sean and cousin Megan when they got to town. Sunday we got to celebrate cousin Haylie as she graduated from high school! After the celebration, Jaida had to go to ball practice and I took the boys with me to my classroom to get some things done before work on Monday. Monday after work(my last contracted day!) I rushed home for Kyler's physical therapy session. Kyler got to try out a crawler machine that is meant to help him learn the motions and get the feeling of crawling without having to do as much of the work to start with. He was not a fan of it. He did some more work on kneeling and pulling to stand. He showed Shayla how close he is to crawling and we talked about ways to increase his hip strength. One thing we will be doing now that we can get in a pool is some water therapy where he can float with the ring and build strength with free kicking. We will also work on him trying to climb stairs by using the pool stairs which should offer less resistance for him. After his session was over we began packing for appointment in KC in the morning. Jaida and Kyler stayed with me and we started getting things together while Mike and Gunner headed out to ball practice. I am sure thankful for the evenings when Mike is home. I am not sure how I am going to manage all the running around to practice and games this summer! Back to packing! We packed stuff for a couple nights stay. I wasn't sure what our appointment would show but I wanted to be prepared for a stay if they determined his fundo had come undone and wanted to get him in for surgery in the next day or so. Then we ran out to Stacy's to get Kyler a haircut before we left in the morning because the hospital told us that they wanted to get a picture of Kyler donating the money from the fundraiser. He did really well for his 1st haircut and looks pretty darn good with his new look! Jaida and Gunner were so excited to get to go to KC with us this time and couldn't stop talking about getting up at 4:30am to go! Finally we got to bed and 4:30 came too early. The kids both got up super easy(way easier than on a typical school day) and we threw in the last couple of things and hit the road. I didn't think the kids would sleep after they were so excited and talking for quite a while down the road. Eventually they did fall asleep(as did I). We ended up running to some stopped traffic on the way but had plenty of time to get where we needed to be. We got to the hospital and headed for a drink from the cafe before heading to the appointment. While there we saw one of the NICU nurses who cared for Kyler(she was the one who did his carseat test and told me about the throw away pads for puke messes). We visited with her for a moment and then made our way to radiology to check in for the upper GI procedure. I was confused about going to radiology because I thought they were putting him under and putting a camera down his throat but that was not how they would check his fundo. To check it, they did a fluoroscopy. That is where they take continuous x-rays while injecting contrast liquid into his tube and watching the path. Kyler fussed a little bit during the part where we had to hold him down to get the pictures correct. In all that appointment took about 30 minutes and we were on our way to kill some time before we met with the surgeon in the surgery clinic. It was too early for lunch and we had about an hour before the next appointment we took the kids to the library in the hospital and they got to play in the play room. I took the opportunity to got visit with health records and information to see about getting Kyler's birth certificate fixed. It has my maiden name spelled in correctly. After giving them the information required, I met back up with the kids and Mike. When it was time, we headed to the surgery clinic. While we were waiting to get called back, I worked on filling out the intake paperwork for the therapy center I choose in Manhattan. Once we got to speak with the surgeon, we learned that everything looked good and his fundo was still intact. This is good news but doesn't tell us why he started vomiting again. We also learned that with a volume challenge he began refluxing but not up high enough to be worried about it. The surgeon also mentioned that Kyler's stomach is quite small. This makes perfect sense with his intolerance or formula we experience early one as well as considering that his stomach was cramped into his chest cavity with the other misplaced organs. He also checked on Kyler's testicles. I got a little scare when he was concerned that he couldn't feel the testicle. I asked if it is possible for them to move back up and he said not really but it could mean that there isn't much left of it. As I started to worry more I realized he was feeling both sides and only his right side had been brought down in February. I mentioned that and was quickly relieved when he said it was all good then. He ended up reviewing that everything looked good and there really wasn't anything to do from a surgery standpoint and we left. I didn't really know how I felt leaving. Relieved that he didn't need surgery but left with no answers or ideas about why he was still puking. I was also feeling weird about not getting to visit with our main team to talk about it. We then has some more time to waste as we waited to meet with the philanthropist person to give them the donations from the CDH shirt/Kyler's 1st birthday fundraiser we did. They wanted to do a picture and had a couple of the people from the Special Care team come down for the picture. They had one of those big checks and Jaida and Gunner got to sign it for the picture. Thank you so much to everyone who donated or got a shirt!! We got a couple pictures with us all in them and then some with just our family and finished off with some of the kids. We were done at the hospital and left to find some lunch. We went to try Joe's KC BBQ but when we drove through the parking lot, there was a big group of people waiting and a van full of people pulled in right before use so we decided to go find somewhere else to eat. We ended up choosing Cheesecake Factory and it was delicious! Kyler even enjoyed it! I gave him some bread and then when he started getting some chunks off of it, I took it away and that caused him to cry a little bit. I made it up to him by giving him tastes of the sauce from my chicken Alfredo. He love it! He let me dip is pacifier in the sauce over and over again. Then at the end of the meal, he had some whipped cream and cheesecake too! We left stuffed and satisfied and headed home. The kids got to watch a movie on the way and the drive went well. We made a stop off in Manhattan to drop off the paperwork at the therapy center and then after we were done in Manhattan we stopped by my moms house in Junction City. Kyler got to see his other Uncle Shaun and Brittney since they were there with my grandparents helping my mom with some things. We didn't stay too long since we were so tired from our long day. Finally we made it home and got the van unloaded. Gunner put himself right to bed and it didn't take long for Jaida to follow. Kyler was talking up a storm so we attempted to FaceTime a few people so he could talk and then we finally connected with Britany and Lee. The boys were super cute and Kyler kept giving Lee kisses through the phone! We are looking forward to getting to see him and other family this weekend at the lake! Now we are basically waiting to get scheduled for the feeding therapies, getting in the Nourish, and starting our summer out for real!
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Last weekend was a nice weekend spent with family. Kyler got to take a bath in Aunt Robin's BIG tub with his cousins' Lee and Liam. Monday night we had a little trouble and some excitement. First we noticed that Kyler's shirt was soaked and brownish around his tube area. After looking, it was blood that was mixed with stomach acid and getting on his shirt. The area around his g-tube was bleeding. This was something new, it has been irritated before but never bleeding like it was. I took out his g-tube and noticed the top of the stoma(hole leading to his stomach) was raw. After cleaning it up and putting some barrier cream on it, I then dressed it with gauze and put his g-tube back in. I sent messages to one of the nurses and we decided to keep an eye on it. I was wondering if since we took him off the Omeprazole(which made his stomach acid less acidic) if it was letting his stomach acid burn and irritate his skin as it leaked some. I still don't know but that would be my best guess. He also ended up throwing up once on Monday which was a bummer. The exciting part of the evening was that I laid Kyler down to sleep around 9pm and he was sleeping so calmly and his sats were good, that I decided to leave off his oxygen cannulas until his machine started beeping at me. It was 6:00 am and the machine beeped for 10-30 seconds and then didn't go off again. He went all night without needing oxygen and kept good stats all night! We had gotten a new pulse oximeter machine and it seemed to be reading better than the old one. Tuesday rolled around and the same thing, he went all night without oxygen again. I was super excited that he wasn't needing it and had told myself if he went a few more nights like that, I would call KC and see about getting the 24 hour study done sooner. Well those plans got put on hold. Tuesday he puked a couple more times and by Wednesday night, he was back to setting off the alarms fairly often even with oxygen on. Kyler began throwing up more, mostly at night to start with. I was thinking it was due to him cutting teeth. His 3rd top tooth has broken through, but its still working on coming down all the way. At that point I didn't think too much of it. Then my birthday came and Kyler decided to show me how he could get from his belly to sitting! I had seen him do it once before but this time I was able to catch it on video! It was totally awkward but it worked for him! Ever since then, he has become a pro at it and does it much faster and just a little less awkwardly! He is so proud of himself and he is loving being able to move himself. On Friday we took advantage of the beautiful weather and watched big brother blow bubbles in the front yard. We like being able to get out of the house now! Kyler and Gunner enjoyed playing with the bowling set that evening. In the morning the boys got dressed and were wearing matching outfits. Gunner was very proud that his brother matched him! It didn't last long though because soon, Kyler had a blowout and that outfit had to come off! We spent the rest of the weekend just getting things done around the house, a graduation party, a surprise birthday get together, and then the first ball practice of the year. Kyler had a lot of fun hanging out on the blanket and enjoying the fresh air! Kyler has had some fun movement things happen. I already mentioned the getting to sitting position. He is spinning himself all around to see everything and he is getting up on his knees and arms! He looks like he is so close to crawling and I am super excited about that, but it also means I will have to do some more baby proofing! During his last session for PT(but without the physical therapist) he even scooted just a bit on his knees! I really think he might figure it out and start crawling before long. He has also been working on pulling to kneel and pulling to stand and he is getting pretty good at it. The trick with him is finding what will motivate him enough to want to stand or kneel. Usually its try to get to his pacifier! He has also figured out how to sit on his car and press the buttons to make it make sounds. He is also starting to wave more consistently and he is signing "all done". Oral feedings hit a major wall since last Monday as well. He has been basically refusing any food by spoon and even my little tricks aren't working. He will still attempt some foods by mouth if he can hold on to them but even those have been gagging him and making him vomit. He was on such a roll and it has been so discouraging to see him stop eating. I am especially saddened because we go to see the feeding clinic in four days and I was hoping he might be able to show them some eating but his track record the last couple of days doesn't look promising. Luckily I do have videos of him eating when he was doing well! Since Pukey McPukerson is back in town, I sent a message to the special care team in KC. I included the information about his g-tube site bleeding and the increase in vomit. I shared my concerns about his stomach acid being too acidic for him since he's been on a acid reducer his entire life. I also shared my concern that part of the vomiting might be due to gagging and choking on drainage from what I think is allergies. Both Jaida and Gunner are on daily allergy meds year round because without them, they get hoarse, hacking coughs. Since Kyler has been having clear nasal drips, cough, and excess vomiting, it would make me think he may have allergies as well. The surgery member said we could have his pediatrician handle the allergy bit or the special care team. I let her know I would visit with his pediatrician first. She also asked about when school was out so that they could schedule him for an upper GI. They are wanting to check to make sure his fund has not come undone as the reason for the increase in puking. I am in that weird place of wanting two opposite things with that. First I want it to not have come undone so that we can avoid another surgery but on the other hand I want it to have come undone so it would explain the sudden increase in vomiting. Life with a medically complex kid is weird and mind boggling. Then I started this morning with a call from KC telling me they have scheduled Kyler for the day after I am done at 8:30am. So much for starting off my summer with sleeping in! So now we are back playing the clean up puke everywhere game and I am optimistically hoping that I can get the kids in the pool this weekend but that will depend on how Kyler is doing! Now we are awaiting our trip to KC to see the feeding clinic and then another trip to get the upper GI done. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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