Last night in preparation for today's endoscopy, the anesthesiologist called to do Kyler's workup. This is what had to be done before the day of the procedure. Luckily they were able to do it over the phone versus us needing to drive to KC last night to get it done and then need to stay the night. It mainly consisted of us reviewing his health history and current regimen. As we were finishing up she told us that they were going to reserve a room for Kyler to stay just in case he had any trouble with sedation or oxygen. She said that he was the last scheduled appointment and since it was late in the day they just wanted to make sure they had a spot if we needed it. I had already been planning on taking a bag just in case so that didn't change my plans too much. What did change was the company I was going to have. We had been planning on my dad and Gunner riding along but since there was chance for overnight we thought it would be best to not have Gunner come just in case. I didn't want to him miss school and I didn't want to have to make sleeping arrangements for him and my dad as well. So we changed plans and Gunner was going to get to hang out with Grandpa Art after I left and until Mike got home with Jaida from the concert and I would take Kyler by myself. The anesthesiologist also wanted us to be there a little before our check in time of 3:00 to have labs drawn to check his levels before they did anything. I was already planning on leaving in plenty of time to be early just in case so that wasn't a problem at all. This morning we got up and around and I got to take Jaida to school while the nurse took care of Kyler at home. On the way to school I told Jaida about the concert. Gunner was a little upset he didn't get to go and I told him I didn't know if he was old enough to go(really it was because we figured it would be too late for him). After that he informed me that Grandma Jody already took him to a concert and that was when he was only three. So after dropping Jaida off, we went and got a special McDonald's breakfast since he didn't get to go to the concert. He was satisfied. After getting back home I got Kyler and I's things together and gave him a bath followed my no lotion per the doctors orders. I had the nurse feed him early so that he would get a feed in and be done before the cutoff time. He wasn't allowed to have any formula/food after 9:00 am, no Diuril in the morning, and only water or Pedialyte between 9:00 am and 1:00 pm. After 1:00pm he wasn't allowed to have anything or they would not be able to do the procedure. After getting everything loaded up I gave Kyler an ounce of Pedialyte. He started to reflux on it pretty quickly, most likely from it being straight out of the fridge cold and I used a syringe to push it in and probably went too quick. He didn't really throw up though so that was good. We got buckled in and headed to KC. The trip was uneventful. As we arrived at Children’s I loaded the stroller up with his bags and my purse and headed in to the lab. Kyler was a champ. They took two vials of blood to check his levels and Kyler didn’t even flinch. After that was done we had a little bit of time to kill while we waited for our check in time. We went to visit the gift shop to look for a stick on card holder for Mikes phone. I had gotten one this summer and wanted to get him one. I was also in search of the delicious sea salt caramels they sell. I was disappointed to learn that they were out of both of the desired items. Next stop was to check in at same day surgery. We checked in and sat in a very empty waiting room to be called back. Kyler was literally the last one for the day, just minutes after checking in the receptionist shut off the lights on her desk and closed the window. It didn’t take long to get called back to a pre-op room. On the way back to his room, every nurse that saw him commented on his HP outfit and how cute he is( I know he’s cute but it’s fun hearing it from strangers who see tons of babies on a daily basis). Once in there they took vitals and we got him in a gown. Then we waited. The anesthesiologist and GI doctor on call came in to go over the procedure and risks. The anesthesiologist also mentioned the overnight room and the way he was talking about it sounded like a for sure thing not just a possibility. I inquired about that and was told that they ended up talking to the Neonatologist that sees Kyler in the Special Care Clinic and he thought it was best for Kyler to stay the night given his history and how far away we live. Then they said his labs looked good but he had one number that was a little low but it wasn’t a concern so we could go on with the procedure. After they left I started making phone calls to work and Mike to let them know we were staying over. Luckily my sub from today said she was available to be there again tomorrow! Then we waited some more. And some more. Kyler was great and played for a little bit and then napped and then played some more. The nurse even commented on how good he was. At some point a new GI doctor came in and introduced himself and let me know that the other doctors shift was over and he would be the one doing the procedure. At 5:10pm they finally came to get him. He didn’t fuss at all and I went to go sit in the same day surgery waiting room. After checking in there(it’s on a whole different floor) I was given an electronic buzzer like you get at some restaurants that lets you know it’s your turn. I then made my way around the corner to the Subway that is housed at the hospital and got my dinner. I worked on sub plans a couple things for work and then Mike FaceTimed me. While we were talking the GI doctor walked into the waiting room and I was called over to talk with him in a little room. Mike was able to hear how the procedure went and I was able to see some of the pictures they took while doing the scope and biopsy. Kyler did amazing. He had no trouble with the anesthesia and his esophagus, stomach, pyloric, and small bowel all looked “textbook”. This means that he didn’t have any ulcers or tearing and most importbaly no damage from the chronic vomiting!! He commented on the part of the stomach where the tube rests/is held in place and said it looked great. Kyler’s didn’t have any kind of discoloration at all and usually they see redness or some other signs of irritation but not on Kyler. Our miracle just continues to wow people. The doctor also shared that they took a couple biopsies. One was to look for allergies in the cells(eos) and the other was to check for H Pylori. He thought he wouldn’t have the H Pylori based off of what he saw. Next I headed back to wait to be called to get to see him in recovery. My buzzer went off and I was told I needed to go to “Reunion Ave”. Now with all the time I spent here, you would think I knew where/what that was. I didn’t. After getting directions I made my way there to realize I’d walked by it a million times. It’s the hallway junction from surgery doors and the Ronald McDonald room on the 2nd floor. As I was standing there I still wasn’t sure if I was in the correct place and I saw a surgery person come out of some doors(they are almost always in green scrubs) and asked him about where I should be. I had no longer spoke the words when a bed was wheeled around the corner and sweet Kyler was looking right at me! I follow them up to his overnight room. They were putting him in 6 Hall. I had never been to that part of the hospital so I was curious what it was like. One the way the nurse filled me in on some stuff from the procedure. First it took 5 tries to get an IV in the boy. They were successful in getting in the right wrist but she warned me he may have bruises or tendernesss in the other areas they tried. This whole time Kyler was wrapped up and just calmly looking around. The nurse said that was exactly how he woke up from recovery which surprised me a bit after being told to expect a grumpy grouchy kid when he woke up. I was prepared for that after experiencing Gunner waking up from anesthesia and see how unpleasant that was. That is just another way Kyler amazes me. For everything his has been through and goes through, he is just a beautifully happy boy. He doesn’t fuss much and is just amazing. We get to the room and begin to get settled. We are now arriving close to shift change so the first nurse is trying to get him all checked in, put on oxygen, get baseline vitals, etc. before her shift is up. Well we got most of it done and found out the oxygen tubing was too short so we had to get an extension piece. I also then went over what supplies he needed and started asking about food for him. He hadn’t had any food since 7:30am and I didn’t want him to have to wait too long. I did know that it takes them a little bit of time to get things together and to get formula and such. Shift change came and we were still waiting on many things so after I asked, they let me make up a feed and use my supplies from home to get his feeding started so he could finally get some food in his tummy. We have just been resting and hanging out. When some nurses came in for an assessment, I took that opportunity to take the stroller and med bag to the van and bring up my overnight bag. Next I got him in his jammies and we snuggled. It was time for his medicine but nobody had brought them in so I called for a nurse and they were able to get them. There are two nurses working with Kyler, one is being trained. I ended up training them both a little bit. They had brought a medicine extension to give his meds but the were having trouble getting it attached. I shared my tricks I’ve learned and he got his meds. I then snuggled him some more and put him to bed for sleep. He was starting to get fidgety and ended up rolling into the metal bars of the crib and hit his head. That got a cry out of him. I requested blankets to make a roll barrier for him and then got him back to sleep. He kept fussing in his sleep and was crying out some. I perched in the chair and tried to settle him. In that moment I was overcome with a very strong sense of deja vu. Put him in the crib and made up my bed for sleep. He just kept fussing a little so when the nurses came in I requested Tylenol for him. They got it for him and I am currently holding him and trying to get this typed up before I fall asleep. We are planning on heading home tomorrow but I have no idea what time.
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On the Friday after Thanksgiving we headed back to the hospital for one of the procedures the GI doctor wanted to have done. That appointment was at 11 so in the morning we got up and packed up our stuff from the hotel stay and loaded up the van so we could leave from the appointment to head home. We got to the hospital a little early and went to visit Dr. Harvey who has been Kyler's pediatrician up until the start of November when he took a position at Children's. We got to see him and took a picture of Kyler and him. Unfortunately his specialty isn't one that Kyler needs so we won't get to see him for any check ups but we might get to stop in to say hi from time to time. After visiting we headed to radiology, we were able to get in a little bit early for the appointment which was nice. Mike and the kids waited in the waiting room since they couldn't be in the room with us for the procedure. We got Kyler undressed and the doctors and I put on the lead coats. First they took a quick "normal" X-ray before getting started. Next they used a syringe with special contrast liquid to slowly push in the liquid through his G-tube while the machine showed a movie like picture of what was happening. It only took around 5-10mL for him to start refluxing. It was very obvious to even my untrained eye. The liquid seemed to jump up his throat in spurts. Luckily he didn't throw up or look uncomfortable from it. The positive thing that we saw was that his stomach started emptying immediately which means he doesn't have delayed gastric emptying, and that's a good thing. Unfortunately I didn't know what that meant for his feeding and regurgitation issues. We had talked about cutting volume but he began refluxing on just a tiny bit of liquid(he is supposed to get 120mL at a time and he started refluxing on 5-10), so to me that means cutting his volume may not do anything for his emesis. I was pretty frustrated and confused and some other emotion I can't describe, maybe hopeless but not quite that strong. After the test was done the doctor had Mike and the kids come in so that he could explain what he saw directly to both Mike and I. Now he only told us what he saw, nothing about what all that meant or what implications that has for Kyler. We next headed up to the PICU so Mike could say hello to a friend whose child is staying there currently. While waiting for him to get done I was stressing myself out quite about trying to guess or apply some kind of logic to what the radiologist had said was happening and what that could mean for Kyler. I was wondering if that meant that he is going to have to have the Fundo surgery or the GJ after all? Did that mean that my parental instincts were so far off? I was also conflicted trying to decide which was the major problem. I was torn between getting him to be able to do oral feeds and stopping the vomit. Which was more important? The longer we wait to get oral feeding started the harder its going to be but if he is tearing up his esophagus from regurgitating will it cause permanent damage where he can't ever do oral feedings. The test showed he started refluxing on a tiny amount but he didn't start throwing up that amount so maybe a reduction in volume would help. My thoughts were bouncing all over the place and a hundred different possible scenarios and things popped in and out of my mind and I knew I wouldn't have answers until the team got the test results, looked them over and then called. I was going to have to just wait(something I am not the best at). After Mike finished we loaded up to head home. I was physically and mentally worn out from being in KC since Tuesday night. The weekend wasn't too restful either but it was fun. On Saturday we got to see some family and Kyler got to play with his baby cousins and I got to play cards with the family. On Sunday we had a pretty lazy day and all of the week caught up to me and I was wiped out. I just could not wake up. I was so tired that I took a shower to try to wake up so I could get some things done and it instead put me to sleep. I was still worried about what changes we were going to get to try and upset I didn't get normal household stuff done and had a fairly rough night of sleep. Monday morning after a slow start I headed back to work anxiously hoping the team would call us and tell us what the plan was. I ended up calling and leaving a message on my lunch break but never got a call back. I was disappointed. I so wanted to give something else a try and I didn't feel like I could do that without doctors orders. That has been one of the hardest things to deal with as Kyler has gotten older. I don't feel like I get to be mom. I don't feel like I can make those mom decisions because he is followed by so many doctors and I am worried that if we try something without their permission we will get in trouble. I know that sounds crazy but I have seen multiple stories on the Facebook groups for parents of kids with special needs or medical issues where parents have been turned in for neglect or abuse for trying something that didn't match with doctors orders. It is so maddening to not be able to do what I think is best for my child. Okay now that I got that off my chest I can move on. After work I hurried home for Kyler's PT and nursing session with ICD. Kyler is making good progress with his motor skills and starting to do really good with supported sitting. We are still working on getting him to try to sit unsupported and to roll from back to tummy while lifting his head to get all the way over and in good position. Kyler worked pretty well for Shayla and he enjoyed playing with Kim as always. We looked at Kyler's mouth and it looked like Kyler might have a slight posterior tongue tie. I had wondered a while back about that because he makes clicking sounds with his sucking, he can't keep a pacifier in with his suck, and a few other things that are characteristics of a tongue tie. I decided I would mention it to the doctor on Tuesday when he goes for his 6 month check up. We talked about trying to get someone on board to help work with the oral feedings and motor issues for Kyler to be able to eat orally and we are going to try to get an SLP(speech and language pathologist) to see him regularly. The specific SLP they had in mind is trained in all of the stuff an OT who did oral and feeding work would be trained it. So now we are just waiting to hear when that can start and how often they will see him. After Shayla and Kim left Kyler passed out immediately, his PT sessions always wipe him out. Later that night we attempted some rice cereal and it ended in gagging and throwing it all up. Jaida was helping distract him while I fed him and that seemed to help, it was almost like his body was trying to do it and then his brain realized what what happening and freaked out about having food in his mouth. Off to the bath he went. We had a double level bath happening for a while when I had Kyler in his tub full of water which was sitting in the real bathtub full of water with Jaida taking her bath. She was pretty excited to get to take a bath with baby and Kyler thought it was pretty fun to try sitting sideways for a bit! After bath it was bedtime for the kids and I then got to googling things about tongue ties and also began working on a write up for the home health nurse about what we wanted to see Kyler's day look like. Two and a half pages later, I think I have down the most important and relevant information to guide her in setting up his day. I finally went to sleep but had another restless night of worries and stress. This morning I showed the home health nurse the new exercises Kyler needed to be doing and headed off to work. I finally got a call back from the team coordinator in KC, however she wasn't calling for the reason I wanted. She was calling to let me know she was working on getting our suction machine but wasn't sure if she was going to be able to get it approved. This boggles my mind that a doctor ordering something could be denied, they are the experts right! Anyways while I had her on the phone I asked/told her that we wanted to try a 4 hour schedule with keeping the volume per feed the same and continuing to fortified the formula to higher calories. She was concerned because this would equal cutting out two whole feedings. While I understand that concern, he was throwing up at least two whole feedings and still gaining weight so I feel like this would be worth a try and who knows, maybe he won't throw up as much. I told her we would take him for weekly weight checks to make sure he doesn't start losing a bunch of weight or having negative effects but I really wanted to give it a try. She ran some numbers and said we were at the lower end of calorie range and she would feel better if we went back up to 125mL if we were going to do the 4 hour schedule. I agreed and we planned to give it a try for the next couple of weeks. I got off the phone and finally felt a little hope and excitement that we were at least going to get to try something. A little while wen't by and I got another call from KC, this time it was the GI department trying to get the second procedure scheduled. This procedure is the endoscopy where they will sedate Kyler and put a scope down his throat to look at his esophagus and see if there is damage or ulcers or whatever else from the chronic vomiting. They will also take little biopsies of his esophagus if I remember correctly. The somewhat scary part of this is the sedation. It is a little scary with Kyler's history and need for oxygen to get this done. Before this procedure can be done he will have to have a pre-anethesialolgy workup and it can't be done the day of the procedure. After going over his entire health history(which is crazy because it should all be in his files at CMH already but each department has to get the information on their own) we got to the scheduling. The lady on the phone started looking and said her orders said it needed to be done in the next two weeks but her first opening was not until January 18, so not in two weeks time. She then said she would put us down for that date but she was going to call and find out if that two week time frame was urgent or not. It didn't take long for her to call back and it was indeed urgent so Kyler was going to get added on to a day to wait around from1-7 and wait for them to have time to get him in. Ugh, just what I wanted to do, spend 6 or so hours sitting in the hospital waiting around. She told me to plan on this Friday and I said okay and went straight to the office to try and get a sub. It thankfully was the end of the day and I left work and headed to Kyler's 6 month check up with the new pediatrician Dr. Bertram. On the way to the appointment I got another call from KC and it was the lady I had been scheduling with, she was calling to tell me they just had a cancelation for Thursday and could get Kyler in. This meant that he would have a scheduled time not a sit around and wait type of deal. So I told her to book it and we would be there. I called in to work and asked them to change my absence day from Friday to Thursday. After meeting Mike at the pediatrician's office, I began filling him in on all of the information I had gotten in the last 8 hours. The one downside to the procedure being done on Thursday is that we had gotten tickets to see Home Free. We have been holding on to these tickets and keeping it a secret from Jaida. We were going to surprise her and take her to her first concert to see them since she loves watching their Youtube videos before bed. I didn't want her to miss this for Kyler's procedure, her and Gunner have missed enough things from the summer because of Kyler's needs so Mike and I agreed that he would stay and take her to the concert and I would take Kyler down for the procedure. We even thought he could take Gunner too who could use my ticket. After more thought we decided that Gunner may not be able to handle being at the concert because it starts later and he can be a huge grouch when he is tired. We decided we would see if my dad could come to KC with me and we can take Gunner with us and we would find someone to use my ticket(like my sister). Back to the check up, Kyler is weighing 15 pounds 5 ounces and is 26" long. We got to visit with Dr. Bertram and shared with him what happened at our appointment in KC last Wednesday as well as the upcoming procedure. He did his assessment with Kyler and during his assessment he thought he could feel Kyler's testicles in the canals. This was hopeful to hear because if they are moving down, he may be able to avoid that surgery! Next up was vaccinations for Ky. The poor baby got poked 3 times and was very much not happy about it! We did learn that there is one vaccination that he couldn't get because he didn't get the first round of it due to his condition or something around the time that he would have needed to get it. I can't remember the name of it but it was one you drink, I guess its a good thing since he can't drink! Before leaving the doctors we made few appointments including his weight check, confirmed his RSV shot, booster shot for the flu, and his 9 month check up. Mike made the comment when leaving about having to have so many calendars and its true. I am thankful for the ability to make multiple calendars on the iPhone, color code them, and be able to have that on me all the time. I currently have six different calendars on my phone. Mike, Jaida, Gunner, and I all have one each and Kyler has two. One that keeps his home nursing schedule and the other keeps all of his other appointments on it. Please say a prayer for Kyler that he tolerates the sedation and procedure well and doesn't need to be admitted overnight for any reason. Also please send some positive thoughts our way and we get to try out this new feeding schedule! Love, The Moran's A lot has happened in the last 10 days. To start off Kyler got his new glasses that actually fit! His new glasses are a navy blue and much better fitted for his face. He looks so cute in them and after a couple adjustments he is getting used to wearing them most of the day. They only complaint I have about them is it makes taking pictures of him a lot harder since there is usually a massive glare on the lenses. Kyler learned a new skill recently as well. He can now stick out his tongue at people. His great grandpa Bill was really getting Kyler to copy him! He is super cute doing it now but we may not want him to have that skill when he gets older! During the weekend I had found a sippy cup that has a straw and can be used at almost any angle so I bought it to give a try. The first go round was pretty successful and Kyler was sucking on it and even swallowed a few drinks. I was ecstatic! I continued to try the cup throughout the weekend and he continued to do okay with the cup. A lot of the time he isn't interested in drinking but the times he is, he will attempt to drink some! He still has a long way to go but the fact that he was able to drink from it gives us a lot of hope! Saturday Kyler turned 6 months old. It was a pretty exciting milestone looking back at all he has been through and knowing that 6 months ago we weren't sure if we would get to bring him home or if we would be coming home with an empty carseat. We are so thankful that God has blessed us with our sweet, amazing, miracle boy. We finally got around to taking family pictures this weekend! We waited to get Kyler dressed until we got to the location to avoid ruining his outfit in puke before we could even get started! We headed out to get started and sure enough during the first pose he puked. Luckily he didn't get anyone too messy and we were able to wipe it up pretty easily. We also got an action shot and will be great for a true to life picture of our family at this time! It was pretty cold out and we did our best to get done pretty quickly. We have gotten some of the pictures back already and I can say my children are way more photogenic than I am! I spent the next day trying to pick out my favorite picture of Kyler for the CMH calendar. We had been asked to submit a photograph of him and a few sentences about why we needed the maternal transport and how he is doing now for the calendar. It is really hard to choose when I love all of his pictures and most of my favorites are candid but have my messy house in the background! I didn't want that mess documented for everyone to see! At the start of the week we had told Jaida and Gunner about getting to go to KC with us for his appointments and that we would be staying in a hotel where they could swim. Gunner bounced off the walls for 3 days because he couldn't hold in his excitement. Kyler was set to have 3 different appointments and then we would stay the night to do Thanksgiving with my family in Lansing. After getting packed ahead of time we set out Tuesday as soon as we could get loaded and on the road after work. We made it to Lenexa around bedtime and got situated and to bed. Today started of with Kyler's first appointment at 10 am. The first stop was getting established with a gastrointestinal doctor to have another expert to help figure out the large amount of vomiting Kyler does. I was prepared with data on how often he is vomiting, a list of questions and options we wanted to look into, and I was prepared to do some arguing..I mean advocating for what we wanted to give a try. We got checked in, got stats taken, and taken back to an exam room. We learned Kyler is now 15 pounds(6.92kg to be exact) which means he has gained a pound in a week. Next we waited for almost an hour before the doctor came in. I was getting antsy and luckily we had packed a bag for each of the big kids with books and toys to keep them occupied. Finally the doctor came in and he first started asking questions about Kyler's history, symptoms, and current routine. I was under the impression he would already have this information so I was surprised we had to go through everything again. Then he mentioned the fundo surgery. This is something I have been reading about and hearing about experiences from other parents through some Facebook groups I belong to. We were not wanting to go with this option at least at this point because we feel there are other non-invasive things we could try first. When we shared this with the doctor he was glad because he isn't a fan of the procedure. It was also brought up about going to a GJ tube. This kind of tube feeds slowly into the intestines and runs 24/7 which means he would have to be continually hooked up to the feeding pump. This is something I didn't want to do yet either because I felt like there were more things to try first. We went through our questions and thoughts on the vomiting with him and mostly we were told that he would advise our special care team so that Kyler's care was coordinated. One question that we did ask and get a solid answer on was about his medications. I had asked if the Omeprazole(reflux medicine) might be making him vomit more since the side effects include nausea and vomiting. We were told that he really needs that medicine to protect his esophagus from the acidity of his reflux and vomiting. He also talked about a couple procedures he wanted to have done to just make sure we had our bases covered. We told him we could stay in town longer if there was any way to get in on Friday for them to be done. He had a nurse work on it and they were to give us a call so we could get going. We finally finished up after we had been there for almost two hours. We then had to quickly get loaded back in the car to head to another building for Kyler's make up hearing test. Last time they were unable to get data on his right side because he woke up and he needed to be asleep for the test to work. We arrive about 30 minutes early and take Kyler and head inside while Mike takes the kids to go get lunch and kill time since they can't be in the room for the testing and it could take an hour to an hour and a half. I first have trouble getting checked in(they use automated touch screens in the waiting area) but I was the only one there so the receptionist checks it out and I learn we are at the wrong building. I text Mike to get him to come back to get me and head back down to wait for him. They had scheduled the make up at a different building than the first one and I hadn't paid attention to where it was and just assumed it was the same location, lesson learned. That office called the one we were supposed to be at and let them know we were coming but would be a little late. While I waited I got his feeding hooked up and started and helped an older lady work her cell phone because she too was having trouble finding the correct place to be! As we booked it back across town I heard some diaper filling noises coming from the back. After getting to the correct building and fighting a little traffic, I discovered Kyler had a full blowout and his clothes, carseat, and feeding pump are now decorated in diaper contents. Again Mike takes the kids and I headed inside knowing I was going to have to wake him up to get him cleaned up and that was the opposite of what we needed at that time. I got checked in and they were waiting for me. I apologized and told the hearing specialist that I needed to get him cleaned up before we could start because of the blow out. She left the room so I could get him ready and I got to work. I had just finished getting Kyler clean and was beginning to get all the dirty stuff in the puke bags we carry when he decided vomiting all over the place would be great. I was almost in tears at this point. His carseat was covered in fecal matter, the changing pad I had him on was covered in vomit, I only had one set of hands and couldn't dig for a blanket and had nowhere to set him so that I could clean up the mess. I ended up having to prop him behind me in the chair which wasn't comfortable for him at all while I did my best to clean up the mess. Finally I was able to get the dirty stuff bagged up, the trash bagged up, and a clean blanket out. I was not about to fight a clothes battle so he stayed in just a diaper from this point on in the appointment. The hearing specialist came back in and got the probes connected to his ears and forehead and turned down the lights so I could try to get him to sleep. Well the kid wasn't having it, he was wide awake from the poop and puke and cold wipes and stressed out mom. The specialist could tell he wasn't going to go to sleep so she suggested we try the sound booth but said was still pretty young to do that one yet. We gave it a try and it to was a failed attempt. Kyler is just too young to do that kind of hearing test at this point. We returned to the first room and she did a different probe that was more like a screener which he had done the first time too. She suggested to try again in 3 months and also said that Kyler is at the point where he is getting too old for the ABR hearing test because he is more alert and active. It is now a little after 2 and I texted Mike to come get us. I load Kyler up(still in nothing but a diaper) and go to the lobby to wait. I ended up having some time so I was able to get him dressed before going outside. We got picked up and headed back to the main campus for our next appointment with the special care clinic. I am pretty stressed by this point and I am gearing up to talk about the vomiting and eating issues. Once back in the exam room the first two team members come in and we get started while waiting on the rest of the team. We go over any changes and general information and we meet a pulmonologist who will now be on Kyler's team since he is on oxygen. They had gotten the results of the oxygen study that was done while Kyler was on oxygen and they said that he was in appropriate range 99% of the time and the lowest it ever got was 85% which was also when his heart rate spiked so they think that time was a movement issue(the pulse ox doesn't like kids to move-it can't read their body as well). We went over our oxygen use and the pulmonologist was okay with what we are doing so we get to continue using oxygen as needed throughout the day based on Kyler's saturation levels during spot checks. As long as his numbers are 95 or above he can be hose free, if they are lower than that he has to have oxygen on. He then wears it all night for sleeping. This will continue until the spring and summer when its safer to do a trial off oxygen again. We also learned that they will watch his lung growth with periodic x-rays and then around age 4 they will do a more formal lung function test. The other team members trickled in and we start talking about the vomiting. I ended up just jumping in with my questions and thoughts about his feedings and vomiting and they listened and then we discussed. The questions and thoughts we had were: 1. Are we feeding him too much? Our thinking on this is that both of our other children never ate the recommended amount and were both tiny little things but healthy. I even told them that Kyler's is the fattest baby I had! 2. Along with the feeding too much, could we look into a hunger based feeding schedule with safeguard for a maximum time he could go without food. I was thinking this is like what you would do with a typical infant. 3. If the issue may be with a sensitivity to the formula, could we try a blended food diet where we would put solid foods blended up through the tube. Those were the main questions and things we wanted to discuss. The fundo came up again and we shared our desire to not jump to that right away and since he is gaining weight and developing fine, it sounds like we get to stay away from that for now! We discussed the questions we had and were told that he is too young yet to do blended food and that would be something maybe after he is 1 or a little older, which I kind of expected to be the answer but wanted to bring it up anyways. Then I presented the data on how often he is throwing up(6-8 times a day) and we discussed the amount in volume and the richness of the formula he is getting. He is currently getting fortified formula at 24k cal and typically formula is 20k cal. He is also still being fed every 3 hours at 120mL. To us this is a newborn schedule and he is now 6 months old and shouldn't need to eat so often. I was surprised when the neonatologist agreed that we may be feeding him too often and too many calories. I brought up that he is vomiting 6-8 times a day and still gaining weight so it would seem like he wouldn't be hurt by losing some food being pumped in. We agreed to make some small changes but first either cutting out a feeding or mixing his formula to regular calorie count. After other discussion about things from our GI appointment int eh morning it was decided to wait until after a procedure was done before making changes. In the GI appointment the doctor wanted to get a scope done to look at his esophagus and and upper GI to check that his intestines are all positioned correctly and not having any twists or blockages that could be causing the vomiting. We told them that we could stay in town a couple extra days to get them done on Friday if there was an opening. Along with the feeding discussion we talked about OT and how Kyler is currently getting OT due to not having someone available so they are working on getting him seen in KC but it likely won't be until January. I shared with them what I have been doing to try to encourage him but I felt like he wasn't interested at all because he is never hungry from being fed so often. I didn't hear anyone disagree with that idea. So I am now thinking we need to see if we can find an OT through somewhere else to work with him since ICD doesn't have one at this time. After the feeding discussion we talked about his undescended testicles. Originally we had talked about him needing surgery around a year old if they have not dropped by that point. As of today they still have not come down so he was given a referral to Endocrinology to make sure there isn't something hormonal going on that is preventing them from dropping. After that he will have a camera inserted through his belly button to look for them. If they can't find them from going in that way, they will make an incision and go through his groin. Then they will have to decide what they are dealing with and go from there. They may bring one down at a time and watch to see how his body reacts. The muscles can be tight and sometimes too tight where it cuts off blood flow and he could potentially lose a testicle. They may also find that they never formed correctly during fetal development in which case they would need to be removed because that mass could turn into cancer if left inside him. I am praying that they come down on their own before surgery is required. We are glad that if he does end up needing surgery, it will be Dr. Snyder who was the doctor who did his CDH repair. The team also canceled his hearing test that the other office scheduled for 3 months from now and decided to just do one at 1 year of age since he has passed all of his screenings and he just can't stay asleep long enough for the ABR test. We also are on referral to be seen by cardiology as a precaution and are waiting to hear about that. Lastly his g-tube was checked and it looked good but was looking a little snug. I was glad she brought it up because there have been times that it was really denting in his stomach and I thought it was getting too small but wasn't sure when they changed them out. So we were done and she asked us to run over to the surgery clinic to get a new button. At this point it was 3:45 and we had an appointment in the Fetal Health Center to start at 4. I called our contact for that appointment and let them know we would be there but were running just a little late and we headed to the surgery clinic(which was a long way from where we were). We ended up beating the surgery clinic team member there and had to wait a while. Finally I took Kyler back while Mike and the kids waited in the waiting room. It was a super quick change and I got to do it. I had accidentally pulled his completely out over the weekend and had to replace it at home so this was easy for me now! As I was heading out to get to the next appointment I spoke with the surgery clinic team member who had double checked on some misunderstood instructions from GI and gave us clarification. Basically the procedure we thought was happening on Friday was the wrong one of the two and the one we thought we were having is yet to be scheduled. She also let me know she was submitting all of our prescription changes to the DME for us. We then left and booked it all the across the hospital and up a couple floors to the fetal health center. We were there to talk to a reporter for a media story about the maternal transport service CMH has that we used when I was flown from Salina to CMH. We didn't really know what to expect other than they were going to talk to some staff from the fetal health center and some people on the transport team. We arrived and see a group of people standing in the room I labored in and were told to go in and see a couple of the people who actually flew me that day. I was really emotional and began crying as soon as we stepped through the door way. We got to introduce them to Kyler and visit for a while. There was a reporter with a big camera and he asked us some questions about why we needed the transport, and if there was anything we wanted to say. I was crying most of the time and really got choked up talking about how Kyler wouldn't be here today if it wasn't for the transport we received. The reporter told us it would air tonight at 10 on Channel 9 news and again at 9 in the morning tomorrow and then left. We got to spend some more time visiting with the transport team and fetal health center staff. We finally got a picture of Kyler with Dana who was our coordinator prenatally and unfortunately Dr. Burke wasn't working so we didn't get to see him today. The transport coordinator also took a picture of Kyler with the transport team and that picture will be used in the CMH calendar! Our little boy is a little famous! It has been interesting to me that since we left the NICU I have cried way more and at some seemingly random things than I ever did while Kyler was still admitted. A good friend of mine told me it was because I was in survival mode and now I can afford to be emotional about it and I think she was right. I only really cried 2 times during Kyler's stay, the first was when we were told he was being put on ECMO and the second when I was told we could hold him for the first time. I don't even want to admit how often I have cried or choked back tears since being home. Any picture of a child in a hospital starts the water works and just thinking about what a miracle Kyler is gets me every time. After the interview we had a promise to keep. Jaida and Gunner did amazingly well at bouncing from appointment to appointment all day long and their reward was to finally get to go swimming. We made quick stop at the store and grabbed dinner by the hotel and headed straight for the pool. Kyler got his first swim in tonight! I just loved how cute he looked in his swim trunks. The water was a little chilly but he seemed to enjoy being the water and floating around with me. After we had had enough we headed up to the room to see if we could find the right channel to watch the interview. I was hoping I didn't look or sound too silly and that I didn't have an ugly cry going on! We found the right station and then watched cartoons while waiting for it to come on. Finally it came on and I recorded it from my phone since I wasn't sure if I could get it any other way! It was short and sweet and they didn't use too much of my talking parts(yay!). Kyler looked super adorable and I am glad to have this video to add to his collection of stuff from this journey. Wow that was a lot to type and I feel like I forgot something but that's all for now folks! We will be enjoying Thanksgiving in Lansing tomorrow with family and will return to CMH on Friday for one last appointment before we head home. Thank you all for the continued prayers for Kyler!
It feels like not a lot has happened since our last update yet also like a lot has happened. Tuesday the 31st was the first day for the home health nurse. It was Halloween morning and it was pretty hectic in the morning. We were trying to get Jaida ready for school in costume for her Halloween parade, get Gunner up and going to go with Mike to watch the parade, and show Miss Rachel how to do Kyler's stuff, where things are, and quick basic information all while also trying to get myself dressed and out the door for work. The next couple of days we were really getting used to having her around and I was getting used to getting up earlier than normal to let her in for the start of her shift. So far I think it is working out pretty good, there have been a few things we have had to address but looking back in hindsight it was a crazy way to start off. First off, I assumed the nursing manager had given her the schedule and all of the information that we spent a hour or so going over the night before. I was wrong, she hadn't gotten any of that so my very fast run through of instructions probably weren't the most helpful. Second, she was writing his name as "Kylie" on all of his paperwork. This part I find pretty strange considering she changes his diaper multiple times a day as well as hearing the kids and I call him by name. I gave it a few days to see if she would catch it but she didn't so I corrected her and his name is now on the papers! Lastly, she was not feeding him on schedule and would be an hour or so later than he should be fed. We have since gotten those issues under control and Kyler really seems to like her. She has been helping Kyler get his exercises in and keeps him happy during the day. Thursday evening that week I had got home from work and after getting a hold of Kyler I thought he felt a little warm. Miss Rachel had been holding him wrapped up in some blankets so I thought he was warm from that. After her shift was over and Kyler had had some time to play without being wrapped up and snuggled I noticed he was still warm. I grabbed the thermometer and he was running 102.1 degree temperature. I got him some Tylenol and after some snuggles we got ready for bed. He was still running 100.1 even with the Tylenol and throughout the night his oxygen sats kept dropping and were getting as low as 70s. He also began vomiting brown again after puking 15+ times since Thursday morning. Friday morning rolled around and he was back at 102.1 degrees when Miss Rachel got to the house. I gave her a run down of his night and then went to get another few minutes of sleep while she took care of Kyler. When the doctors offices called I put in a call to the team in KC. I would have called our pediatrician but the one we have been working with has left and the one has not even met Kyler yet so I felt it would be better to talk to a team who knew him. I left a message with with a brief explanation of what we were seeing and waited for a call back. I gave the paras I work with and the lead teacher a heads up that I had a call out but didn't know what they would need us to do. I got the call back from the doctor right as I had students dads coming in for a donuts with dad event. After describing the symptoms to the doctor he told me that we are always fearful of a reherniation and that he wanted me to take Kyler to the ER to get a chest X-Ray and possibly an upper GI to check on his diaphragm. I left right away and started to get emotional as I headed to get him and the nurse to go to the ER. We got loaded up and Mike was able to meet us after dropping the big kids off at school. We got him to the ER and checked in and waited. They ended up giving Kyler a couple doses of fluid via an IV and did a chest x-ray. We saw a spot on the x-ray that we hadn't seen on any of his other ones but they said that his diaphragm looked good. After a weird mishap where the operator at Children's told the ER doctor they don't have a NEON clinic, I was able to get a call in from the doctor in KC to the ER doctor and they agreed on what to do. The ER doctor ended up telling us that they think his brown vomit is coming from little tears where his esophagus and stomach meet. Basically his body is tearing when he forcefully vomits and when he forcefully vomits enough, it causes that blood to mix in his stomach and come out as brown vomit. They thought that Kyler may have something viral causing the fever but he tested negative for RSV and the Flu. I was glad that the ER trip didn't end in a trip to KC. Kyler still fought the fever for a day or two longer but had stopped vomiting brown and we put him back on continuous oxygen. On Sunday the 5th Kyler was baptized. His day was made special by the family who came to celebrate him and his Godparents, Michael and Miranda. He also thought Sunday would be a great day to roll over from his back to his belly! We didn't actually see it the first time, he was laying on the floor playing and Mike looked over and asked if I had moved him. We then spent some time trying to get him to repeat it and he finally did where I could get it on video! On Monday we got the call that his glasses were in. As soon as I was done at work I picked up the kids and Kyler's nurse and we went to get them. I was excited to see how he would react to them. He was in the middle of a feeding so we left him in the carseat and the optometrist put them on him. He shook his head to begin with and then settled down. He stared so intently at her just taking in the details he could now see. We had trouble getting the glasses to stay on him and the smallest strap seemed too small but I told them I could put a stitch in it at home. Once we got home I put the stitch in and got the glasses on him. They kept falling off his face or sliding anytime he moved or when he laid his head on the ground or his seat they would push forward off his face. I was able to get them to stay on while holding him upright and was able to get a video of him seeing me for the first time clearly and playing peek a boo! He got so excited and was bouncing and smiling. I needed up taking them off of him since we were having such a hard time keeping them on in the first place. The next day I called about getting them adjusted thinking we needed to melt the plastic and bend it around his ears more since it looked like to me that the arms were too long. The office said to bring them in and they could adjust them and I planned to take him in on Wednesday. On Tuesday Kyler finally got to see someone about his oral skills. The ICD team SLP who does oral stimulation had a cancellation in her schedule and was able to come with his PT Shayla to work with him and assess him. I wasn't able to be there but was able to FaceTime with Mike during the session to be able to talk with the SLP(speech and language pathologist) about his time in the NICU and all of the things the OT we worked with there had us doing. It was very interesting watching how she assessed him and after giving her the information I needed to I let them finish the session. Kyler is okay with some things and textures in and around his mouth but not all. I was a little disappointed after getting the session notes because I was hoping for some magic thing to do to help him orally and everything that was on the sheet was what we are already doing and have been doing. I don't know what the plans are for him getting seen regularly or if he is able to be seen regularly yet. Wednesday came and we took him to get the glasses adjusted. After they saw them on him again(this time out of the car seat), it was determined that the ones that had been ordered were too big for him. He had gotten the toddler sized glasses( I think to fit over his larger nose bridge) and they were just too big. The two ladies working brought out a new tray of glasses and he got to try on a couple new pairs. They had sizes newborn to 8mo and 8mo+ in different styles. We tried on some Harry Potter styled ones and rectangular styled ones and we ended up liking the rectangular ones better. So we got those ordered again and are now waiting for that call for them to come in. In the meantime we are periodically putting the too big ones on him but not having him attempt to wear them unless we are holding him upright where they kind of stay on. He had a pretty relaxed couple of days and on Friday he only had 3 emesis all day! It seems crazy to get excited about throwing up 3 times but that has been the least he has thrown up in a long time! I put in a prescription refill call to the team and in KC and while talking with the coordinator she asked how things were going. I filled her in on what has been going on and talked to her briefly about my thoughts about his feedings. She wanted to do some talking with his team and then get back to me on those things. She asked about his OT and I let her know about the ICD not having someone right now(due to staffing is my understanding) and how I work in a school and we as a district are short handed on SLP and OT's. She then wanted to schedule an OT appointment for us for when we go down to KC around Thanksgiving. After she checked with the team she called back to let me know she had an OT appointment scheduled and that the team was okay with us dropping his feeds to 120mL every three from 125mL. I don't really feel like it is really letting up on overfeeding him much but I agreed to try it for the next couple of weeks. We also lengthened his time to ingest into food from 45 minutes to an hour. Of course I didn't know at this point that Kyler had been having an amazing day with puking so I don't really know if this change is helping or if something in Kyler clicked since the puking was better before we made any changes. On Saturday he had another good day and only threw up 3 times again with very small amounts compared to his normal. He also got to attend his 1st wedding! He did a really good job and is such a good baby! Today he got to come off continuous oxygen again after having good numbers all morning. His poor little nose needed a break as well, his columella is rubbed raw and starting to bleed. After a quick visit to his grandma's house we went out to great grandma and grandpas house to see cousin Lee. The boys had fun playing together and chatting and Kyler showed Lee how to roll from his back! They are going to be the best of friends! After getting home, Kyler got to try some peaches. He didn't seem to mind the taste but just doesn't know what to do with the food once it's in his mouth. He just pushes is out with his tongue almost like he is spitting it. I am able to get the food in his mouth and he will move it around but I don't know how to teach him to swallow it. I switched out his nasal cannulas for the pediatric size to give them a try. They are wider so they shouldn't rub his columella but they are longer so they will go farther into his nose which may cause some irritation farther back. We will see how they work for him. A while back he got approved for a RSV shot that not many qualify for and just this week we were told that it is finally in at the doctors office so tomorrow he will be getting his first of many RSV shots. I believe he will get one a month until cold and flu season are over. While I hate that he has to get shot after shot, I am so thankful there is something available to help protect his compromised lungs. I too will be getting my flu shot so that we are all protected to give him the best protection. With the cold and flu season being here and already seeing kids in my class come down with things(bronchitis and pneumonia just this last week or two) I have started my routine of changing clothes and washing my hands and arms before touching Kyler. I am praying that Jaida and Gunner don't catch something and bring it home as well! Thank you all for the continued support!
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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
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