It has been a rough and frustrating couple of days. Wednesday night after getting home, Kyler began vomiting again. This time it was concerning because it was bright yellow and smelled terrible. The other scary part was that it was very hard for Kyler to vomit. In the past he vomits quite forcefully and is done and moves on, this time however it was really a struggle for him to get it up and out. This continued through out the night and into the morning. When our home health nurse got there, she agreed that he looked worse and that the vomiting that color was not good. I was able to get an episode on video. Something I have learned is that if I can get Kyler's unusual things on video or in pictures it seems the doctors react a little quicker. I sent the video to our team in KC and then we took Kyler to the ICD offices for a vision check up. When we returned from the appointment I needed to shower and take a nap. I was exhausted from Kyler's rough night and the previous days appointments and surprises. I was afraid to lay down to sleep because I was waiting on a call from KC and Mike was out getting Kyler's oxygen tanks and medicines. So I tried to rest(unsuccessfully) on the couch until Mike got home. Once Mike got home I opted to take a shower first and then continued to wait for a phone call. Then my phone rang and we were told to bring Kyler to KC. They wanted to check the placement of the GJ tube and make sure the fluids were going where they were supposed to be and make sure the balloon wasn't blocking the exit from the stomach to the intestines. I was glad I had already taken the day off of work. Mike had to work so the home health nurse offered to go with me, so her and I loaded up Kyler and I threw a couple things in the can for just in case and off we went. After a seemingly slow drive to KC we got checked in to the radiology department. While we were waiting, Kyler made a friend in the waiting room. He wooed a lady and just had fun watching her and she loved talking to him and then told him she would be praying for him. Then we got called back. They put Kyler on the table and then using contrast liquid, they watched where the fluid went once put through the different ports of the GJ tube. They did this with Kyler in various positions and in all positions it showed the tube was functioning properly, fluids were draining from his stomach properly, and the tube was positioned good. The only thing they noted was that the tube balloon that hold it in place is very close to the pylorus(opening from the stomach to the intestines), but that is due to Kyler's cramped insides and where the surgeon had to place the original G-tube. They decided to try deflating the balloon to the lowest level that would still hold in place, so it went from holding 4mL of water to 2.5mL. Then he said to see if that helped and I asked how long I was supposed to give it. I had a feeling that the water change wasn't going to make any difference because I felt like he was just refluxing on straight stomach acid and that balloon level wouldn't have any effect on that. I was told to give it a day. I then asked the radiology doctor what we do if he didn't stop vomiting and I got "umm.....uh..". I don't know if they have never seen a GJ tube cause this kind of reaction or if he just didn't have a clue what to do instead. I decided I was going to propose a plan. I told him we lived 3 hours away and since we were going into the weekend, I asked if I could pull the GJ out at home and put in a regular G-tube(like he has had the rest of the time). He thought that was a good plan and that we would just need to let our team know. We were all done. It was only about a 30 minute process and the doctors and nurses were sure impressed with Kyler. He was calm and just let them do what they needed to do without so much as a fuss. We sure have the happiest little guy! We headed back to the parking garage and started making our way home. Unfortunately it was rush hour and if you didn't know, I despise driving in crazy city traffic. The way to get home from the hospital involves getting on a highway and crossing from the far right lane to the far left which is four lanes over and you only have about a quarter of a mile(if that) to get there while most of the traffic in the middle lanes are bumper to bumper trying to go straight. Luckily I managed to get the van through the traffic and we were on our way home. That is until Mike called the nurses phone(I had missed his calls) and told us the hospital needed to know if we had left yet. We had just hung up with him when my phone rang and it was radiology doctor asking if we had left because our surgery team was asking. I told him we had but hadn't left town yet so we could come back if I could figure out how to get off that particular highway. He told me he would call back and in the meantime I found an exit and we pulled into a parking lot. I decided I would rather wait there and find out for sure if I needed to go back through that crazy traffic before I turned around completely. About 10 minutes later he called back and said we didn't need to come back and he shared our plan with surgery and that they agreed with it. So I used the GPS to find our way back to the interstate and we headed home, again. The drive home went fairly quick and I got home in time to see the other kids before it was their bedtime(just barely). Kyler hadn't vomited the whole way home and it wasn't until we got home that I realized I forgot to turn the pump on when I put him in the van. So I started his pump and got him ready for bed. Thursday night wasn't any better than Wednesday night and he vomited the yellow acid at lease 7 times(I stopped counting at that point). Finally around 4 am I shut his pump off and handed him off to Mike who had gotten home a little before that. I needed sleep, I was going on about 3 hours worth of sleep since Wednesday. Once we shut off the food and Mike took him to the recliner he stopped vomiting for a while. I was able to get a couple hours of sleep after I texted into my boss that I was going to be late in the morning. We had the ICD nurse and SLP coming out in the morning and I knew I was going to be pulling the GJ out but felt better about having the nurses there and I wanted to call KC and make sure I could pull it even though it hadn't been a full day. In the morning I reluctantly got out of bed(I felt like a zombie) and played with Kyler while we waited on the nurses and Mike took the big kids to school. I had placed a call to the surgery team letting them know he had another bad night and I wanted to confirm it was okay to pull it out even though it hadn't been 24 hours yet. They called back just as the nurse and SLP arrived. I got the okay and I deflated the balloon and pulled it out and then put in a new G-tube. We did Kyler's session with the nurse and SLP and talked about his last couple of days. The surgery member on the KC team was who called and while we were talking she informed me that she had talked to the anesthesia team and share about Kyler and they were going to allow him a pass on the normal waiting period for being sick before a procedure and so they wanted Kyler to get the funds surgery within the next couple of weeks since the GJ didn't work for him and we need to do something to stop the vomiting so his lung is protected. We talked dates and our first option was this coming Wednesday with the on call surgeon. This surgeon agreed to do it but I wasn't sure about having someone who didn't know Kyler. Normally they keep the same surgeon for all procedures if possible. The first available date with Dr. Snyder who has done all of Kyler's other surgeries was on Feb. 8 and the next after that was Feb. 15. They preferred to not wait too long to get it done so the 8th was the date we really needed to do but I couldn't confirm with them just yet because Mike wasn't home to see what his preference was(new surgeon or Dr. Snyder) and I needed to check with work because we have parent teacher conferences on the 7th and 8th. The surgery team member(Kristen) told me she would call back around noon or so since she left at 1 on that day. Mike got back form taking the kids to school and I filled him in. We agreed that Kyler needed Dr. Snyder to do it so I just had to figure that out with work. Then I headed back to work and the home health nurse got him hooked up for food. We were told to keep him on continuous feeds for the time being so for 22 hours a day, he is hooked up to the food pump. Later in the day I texted the nurse and found out that he had only vomited once and it was about the size of a quarter as well as white formula. This was good and a massive change from the yellow rough vomiting he had been doing for the past couple of days. I got an email from the KC team letting me know they got the plan from surgery and I asked about getting permission to try a blended diet(basically blended food you would feed orally if possibly, pushed through his tube). I felt like we were at wall and since we are just waiting on surgery to happen, it couldn't hurt, and if those heavier foods worked and helped him keep food down, then what could it hurt? Mike is more cautious and wanted me to get permission first, I was ready to give it a try and see. So far I haven't gotten an answer yet but when I did get to talk to Kristen again she mentioned the team was aware and they were checking with his GI doctor to see if we could make it possible for a try. The problem they are seeing is making a blend high enough calorie to meet his nutritional needs. I am still hoping they get back to me next week and let me give it a try for a couple meals at least. So I was at work and it was the 100th day of school so my class was doing some fun activities with one our partner classes and I was waiting for Kristen to call back. I talked to my principal and then was able to move all of my conferences to Wednesday(and one to the Monday before) so that I was able to meet with all my families and then go to KC for the surgery. It was 1:00 and Kristen hadn't called and I was getting a little more anxious. I called her and she said she hadn't forgotten me but she had put a call in to Dr. Snyder about moving up the surgery and was waiting to hear back from him before calling. I went ahead and confirmed for the 8th and we visited a little more about the procedure and a couple questions I had. She let me know that they don't schedule the times until a couple days before and then we would be getting more information. One thing we weren't sure of was if anesthesiology would need to see him the day before to do an assessment to make sure it was safe to operate. She didn't know but hoped that since he's been seen by so many different doctors in the last week that they could skip that part but she would have to let me know. If they did need to see him, I would have to really get creative about meeting with my families for their conferences. After work I got home and found out that he had just thrown up another time and it was more of the projectile type we are used to but he looked like he was feeling much better. Unfortunately the stomach acid he had been throwing up had left some surface burns on his skin. His ear, a spot on a shoulder, and under the stickers that hold his oxygen tube in place, all had a rash looking burn from where some acid got on him and sat for a little while. The parts under the stickers are the worst and are still pretty red today after having them off since Thursday. Last night I was able to get some sleep up still not the best, Kyler was still coughing and vomiting some during the night and each time he coughs or vomits, I wake up. This morning the nurse came in for a few hours so that both Mike and I could take the bigger kids to celebrate the life of my Great Uncle Bob who passed away earlier this week. I wanted to take Kyler so that some of our family that we don't get to see often could meet and see him but its just not worth taking him out in groups if we can avoid it. After we got home from the funeral we played and hung out at home. Kyler had a couple visitors and he enjoyed that. Jaida and Gunner enjoyed their Godmother Miranda, taking them for a bike ride around the block. Kyler has done pretty well today and even was doing well enough to take his oxygen off for a bit in the morning and then again for a bit this evening. He is still vomiting but it hasn't been as large of quantity per episode which is good. I was then surprised to get an email from Kristen checking in and wondering how he has been doing, I think he really has those doctors confused and worried. She also told us that she got to talk to Dr. Snyder and we are good to go for the surgery on the 8th but we won't know time until closer to but she imagined he would be pretty early in the morning. When he has the surgery, he will have to stay for 2-3 inpatient. I am hoping that is all he has to stay, he doesn't exactly follow the norm with anything it seems. One thing that was brought up was a possibility of not doing the surgery if he tolerates these continuous feeds well. While I would prefer he didn't need the surgery there are so many factors for him. If he does fine on continuous feeds and isn't vomiting then he wouldn't need the funds but then I have to wonder what about when he gets sick again. He is at risk for aspiration every time he vomits and we have to decide which path is the better one. Another thing to consider is how a continuous feed will affect his life style. Right now he is not mobile but he is working towards moving and crawling around at some point. If he is hooked up to feeding all the time, it makes being mobile more difficult. I am thinking it would be better to have the funds done so that the risk to his lungs is minimized and he could then go back to bolus(single, larger amount) feedings so that he isn't always tethered to a pole. So for the next couple of weeks we are hoping his vomiting is minimal so she isn't aspirating and then we are asking for prayers for a smooth surgery and recovery when he get the funds and has one testicle brought down into place. Thank you all for keeping up with him and keeping our family in your prayers! A final thought I forgot on the last post. Last Friday we received copies of the calendar that Kyler is in for the CMH Transport team. He was not only featured on the February spread but they even put him on the cover of the whole calendar! It is pretty neat to see our boy on the cover and featured in the calendar!
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We've had an interesting time since the last post. On the 11th we got a snow day so I got to stay home with the kids and just hunker down where it was warm! With the colds and such running rampant, we decided to keep all the kids indoors and they didn't get to go out to play in the snow on the snow day. After a couple of days, when the air wasn't as cold, they did get to go out to play. Kyler and I stayed where it was warm and watched them through the windows! The following Monday we had a day off school for MLK day and I took that opportunity to go to Wichita to cash is a spa package that Mike got me for Christmas. It was lovely and made even better by getting to have my best friend Miranda! The roads weren't the best but we made it safely! My mom came down to help with the kids, and they enjoyed that. After returning home, Kyler had a physical therapy and nursing session that was quickly followed by Mommy & Me night with Gunner at his preschool! During physical therapy, Kyler worked on getting on his hands and knees, reaching across his body for objects, and trying to lean on one arm to stabilize while he reached for a toy across his body. He wasn't too thrilled about the leaning on an arm business. I had asked the nurse to bring her tools to check Kyler's ears. He finished his antibiotic for the ear infection but was still tugging at his ears quite a bit. When they checked, they were still reddish pink and the Tempanogram showed that there was fluid in both ears still. I was going to call the doctor in the morning. At Mommy & Me, Gunner and I got to play some games, make some crafts, and get a picture together! While we were there, cell phones started ringing all around the room. It was the school district calling off school for bad weather. I was among the group of people who were pleased. I was excited to get another day at home with my kiddos.
Tuesday morning came around and I called in to our pediatrician's office and left a voicemail. A couple hours later I got a call back. They weren't too concerned about them still being a little red and having fluid. I was. Last time they were a little red, it morphed into a full ear infection and ended up messing with Kyler's oxygen needs. That one little ear infection affected multiple parts of Kyler's health. I asked if there was something we could do so that it didn't turn back into another infection and I was told "we can't just put him on antibiotics all the time". I was not very happy with the tone and unwillingness to come up with something to head off this problem to keep it from being a larger problem. After having to keep pressuring to do something, the nurse finally agreed to give him Benadryl to try and dry him out a bit. I was happy to try something. After talking to Mike, he thought it was be good to give the KC team a call and make sure the Benadryl wouldn't react badly with any of his other medicines so I put in a call to them too. I didn't hear back from them that day so the next morning I called KC again. I spoke with our coordinator and shared what the last couple days had looked like and consisted of. That morning Kyler had a pretty rough start. He was vomiting quite a bit and at one point his oxygen saturations were in the low 80's even with oxygen on at the 1/4 liter. Kim(the coordinator) told us we could bump him to 1/2 to help him through those spells but to wean him back down if we could, and to let her know if he was needing to be on that for a couple of days and wasn't able to get back down. She also said to hold of on Benadryl(which we were still waiting to give until we had the okay from them) while she checked it with one of the doctors. After discussing with the doctors she called back and said no Benadryl but they were going to prescribe him Guaifenesin(Mucinex) to try to get all of the mucus out and also hopefully dry him up some too. Normally it isn't allowed for babies but they felt the risks weren't too great to give it a try for a week until we came down for his next check up. Kyler had been doing fairly good during the day with oxygen support at 1/4 liter and bumping to 1/2 as needed. After the home health nurse went home, things started going down hill for Kyler. A little after 7:00 that night, Kyler started showing some pretty labored breathing. I starting taking some videos and Mike called his mom to come stay with Jaida and Gunner incase we needed to run to the ER. His numbers were looking scary with his oxygen at 1/2 liter dropping and only getting to a high of 93. His heart rate was in the 165-180s which is high for him. We sent the videos to Kim(ICD nurse) and Mike's friend who is a respiratory therapist, to see if they thought we needed to take him in. My fear was that the hospital wasn't going to do anything more than turn up his oxygen and monitor him and we would just be exposing him to all of the nasty germs and illness that may be hanging around in the ER. His numbers had started to get better and so we decided to keep him home and watch him closely. At 9:00 he was still needing 1/2 liter of oxygen but wasn't running a fever and his heart rate as closer to normal range. By 11:00 he had started running a fever of 101.6. We had given him the first dose of Mucinex at 5:00 and were afraid he had a reaction to that so at 11:00 we skipped his Mucinex and gave Ibuprofen to tackle the fever. I had him snuggled up on me in the recliner where I could feel his every move and keep a better eye on him through the night. Around 3:00 I tapped out and Mike was on duty so I could get a little bit of good sleep before work. Thursday morning Kyler was looking pretty rough, almost dehydrated, with his soft spot really sunken in, and just not himself. We updated the home health nurse about his night and she was keeping me updated at work. Most of the day his numbers looked good but he was still on 1/2 liter of oxygen. Random side note, on Thursday we got our carpets clean and I was so excited to have all of the vomit cleaned out of them! Friday morning rolled around and Kyler was looking better but still needing 1/2 liter pretty much 24/7. Mike and I were worried about going into the weekend with him still needing that much oxygen and with Kim having told us to let her know if he was needing it for more than a couple day, we thought it was best to give them a call and update them. I used the online message system through the hospital and before long I got a phone call. I had filled her in on Wednesday nights scare and she asked me to send the videos I had taken. After getting them and showing them to a doctor, they wanted us to bring Kyler to KC to get checked out. I left work right away and we threw together a bag just in case and off to KC we went. We called on family to help again, I really don't know what we'd do without all of their help, my dad was able to get Jaida and Gunner and take them until we would be back. We arrived at the hospital around 1 and were immediately taken back to a room in the ER since he had a referral from his team. This was such a relief to not have to sit in a germ filled waiting room! In there we kind of felt silly because Kyler was looking fine and his numbers were doing better and he was only needing 1/4 liter air. I let them know that he normally does better during the day and then it drops at night. We never got to see Kyler's team but they doctors were communication with them while we were there. They came in to take some blood for tests and decided to just put an IV incase he were to get admitted so he wasn't getting stuck multiple times. Well Kyler and IV's are not the best of friends. The first attempt blew and was unusable and so was the second. Neither Mike or I were very happy during these two attempts. Kyler was screaming his head off, louder than I have ever heard him scream and his numbers were going crazy. His oxygen dropped to around 70 and his heart rate climbed to 199. He was beat red, and pissed off. I was upset because first I had to tell the nurses to turn his oxygen back to 1/2 while they were making him scream like that and his number was dropping and then I noticed one of the nurses who was holding Kyler still was putting a lot of pressure across his upper chest area. I ended up pushing up on her arm and telling her to not put so much pressure there. I was not happy that I had to even say that, I mean he was there because of oxygen needs! After neither of the first two attempts worked, they called for the vascular team to come in with the ultrasound machine. They used the machine to find a vein and place the IV. They must have found a good one, because there ended up being more blood than I expected all over Kyler and the bed. Then they ordered X-rays and a nose swab to check for flu, RSV, and pneumonia. After waiting a good hour and a half we found out he was negative for all the nasty stuff. They then were going to have to give Kyler and EKG because one of the blood tests came back with elevated potassium and with one of his medications they wanted to check it out. Luckily the figured out the blood had started clotting before they tested it so they reran it and his levels came back normal. Now we were sitting in the ER going on 6-7 hours and everything was negative and we didn't know what the next step was. The doctors then explained that they felt like they could admit him since he was needing more oxygen(he hadn't been able to get back down to 1/4 after the IV incident) but all they were really going to do was up the O2 and monitor. Both of which we could do at home if we felt comfortable. Since we had plans to be back to see our team just 4-5 days later, we decided to just treat him at home. So we loaded back up and headed home, making it back around 1 am. Saturday he stayed on 1/2 all day and never had the oxygen off him, he was looking and acting normal though. On Sunday I had to take the oxygen off to change him and his numbers were solid without it on so I gave him a break from the oxygen while he was awake. As soon as he started napping, his sats would drop and I had to put the oxygen back on him but he was able to handle it at 1/8 liter(his normal level). I was excited thinking we were on the path to getting back to normal levels. At bedtime I ended up having to bump him back to 1/2 while he was in a deep sleep. On Monday he was on oxygen all day again and bounced between 1/4 and 1/2. He also had Physical therapy and nursing from ICD again. He worked on some of the same skills and has instructions to practice sitting with one leg bent. He is currently stabilizing using his legs(very stiffly) to be able to sit up and the goal is to have him strengthen his core and be able to support himself with those muscles. Yesterday his numbers weren't the best and he was needing 1/2 most of the day. We had plans to leave right after work to head to KC to stay the night before his early morning appointment so we packed up(SO MUCH STUFF!) and hit the road. Kyler got to experience a new first while we were out to eat after getting to KC. We have moved Kyler to a carseat from the infant carrier and so when we were eating he sat in a highchair. We tucked blankets around him for some support but he did well! During dinner I gave him a taste of mashed potatoes and he took 4-5 bites of it without throwing up! After dinner we headed back to the hotel to get organized and get some sleep so we could be up early for his first appointment. Today started with an 8:30 appointment with OT. We got scheduled with them before Kyler was getting regular visits from the SLP here in town. I was hoping we would get to work with the OT we had in the NICU and hopefully learn some new tips or tricks to help Kyler increase his oral feeds even more. We didn't get to see the OT we were familiar with and got a new therapist for this session. She had read over Kyler's file and we updated her on things we have been doing at home. She had a couple ideas to try to stimulate his orally that were similar to what we are already doing and she did some exercises with him. One thing I learned was that his oral skills will follow his gross motor skills. I didn't realize that the fine motor movements in his mouth are connected to his large motor skills. After sharing how he is currently working on cross body reaches and torso twists, the therapist said that his oral skills are consistent with what she would expect based on the those skills he is working on. We got a list of foods that would be good to use to wake up his mouth a little. Some of the things are tart and sour flavors. We also learned about wrapped chewing that will give Kyler a chance to experience some flavors, practice chewing, but also protect him from choking on food. He also got another sensory chew toy that he can use to practice moving things on the side of his mouth. After we finished with the OT we headed down the hall to radiology for X-rays. After we finished there we had a couple hours until the next appointment so we headed to the main floor and towards the gift shop. During the summer I developed an addiction to the sea salt caramels that are sold in the gift shop. Last time I was back, they were completely out. Luckily today they had a handful of them left so I got me some and I also picked up a new stick on card holder for my phone. The one I've had since June is tearing apart! Next we headed to the Subway that is located in the hospital to get some lunch before the appointment started. Even after lunch we had a good chunk of time but Kyler was getting a little sleepy so we headed to the waiting room. Once there I was able to rock Kyler to sleep and he got in a little nap. Eventually our time rolled around and Kyler was woken up when we were getting his vitals. We got into a room and I pulled out my list of questions and Kyler played on the exam table. He enjoyed the large mirror and was liking getting to lay flat and play for a bit after being in the stroller all morning. After the last couple of weeks we knew this appointment was going to have a lot of discussion to it. I had questions about breathing treatments, scoliosis, Kyler's soft spot, and comments on how Kyler did with the Mucinex. We started out with the pulmonary doctor who is on the team for Kyler's lungs and our coordinator. We began by reviewing the last couple of weeks and as we were talking the rest of the team trickled in. Soon the conversation took a quick turn to catching us off guard. Most of the discussion revolved around the higher need for oxygen that Kyler has been needing and how he is negative for the main culprits and isn't running a fever. His medical team had been discussing this and had come up with a plan. They began talking about surgery to do the fundo which is what we didn't want to do back in November. They also talked about moving him to a GJ tube, again something we wanted to avoid. We were completely blindsided by these plans because his vomiting had gotten under control until he got sick. They went on to explain that he is aspirating again and that is why he is needing more oxygen. He is aspirating when he vomits and some falls back down his throat but goes into his lungs instead of stomach and he is probably silently aspirating on reflux when he isn't vomiting it up. The results of the endoscopy he had in November showed that he began refluxing on 10ml of liquid through the G-tube. His reflux is very severe. I was devastated because I have been feeling like we are finally making head way on his oral skills and this felt like a giant setback. I could feel the tears welling up and I tired hard to fight them back but I broke down at this point of the conversation. The next parts may not be in order of how it happened because I was in a little bit of shock(remember when I talked about PTSD from going to appointments and getting bad news, this type of stuff is why I feel that way sometimes). We were told that they had spoke to Dr. Snyder who did all of Kyler's other surgeries and he was on board with their plan. The plan was to put in a GJ for the time being. Their reasons included his past surgery history, age, and recent sicknesses. Even with this team having worked with many other CDH families, Kyler is unique once again. He just doesn't seen to follow any kind of "normal" even within kids with the same diagnosis. With having both the g-tube surgery and the large diaphragm patch, the fundo surgery at this point is more complicated. They have to worry about the scar tissue left in there, his higher need for oxygen already, and his age right now. He is still so young and though he has been through so much, letting him grow and get bigger would be better for him. Additionally since he as been sick, anesthesiology won't even consider him for surgery until he is clear of sickness for 6-8 weeks. Ultimately it sounds like he will still need to have the fundo surgery possibly around April or May to try to keep the reflux from making him aspirate. Until then he will need the GJ as a "stepping stone" until he is able to have the surgery. The GJ is similar to the G tube he has with the difference being that it feeds directly into a part of his small intestine and requires him to be hooked up to the feeding pump all day and night. The team also explained that we should be cautious of reading blogs or other things about the fundo because the procedure has changed and there is a lot of outdated information out there. I was a little relieved to hear that because what I have read about it was not something that made me feel good about having to have Kyler go through. After we had processed the information we were given and the proposed plan, I was able to ask my other questions. The soft spot on his head can take up to the age 18 months or so to close up and they aren't worried about it. The scoliosis was brought up because I have been reading information from other families with CDH and it turns out there is a higher correlation of scoliosis associated with children with CDH. It has to do with the patch pulling on the muscles and causing the spine to develop a curve. At one of the last physical therapy sessions I had asked to to check because one family said theirs was diagnoses at 9 months old. Kyler was clear and the doctor today said that 9 months old would be an extreme case as he's never seen it that young. They did reassure me that keeping an on it is part of his follow up care in the years to come. We also asked about breathing treatments as another possible way to help Kyler fight off/avoid/work though normal colds and viruses that medicine can't help. The pulmonary doctor thought we could give it a try and we are to watch to make sure he doesn't react badly to them. We had more discussion about the GJ tube and they wanted to get it changed as soon as possible. With us living so far away they wanted us to stay to get it done instead of having to drive back in a few days. We don't want to risk damaging Kyler's only healthy working lung from aspiration so the sooner the better. They started checking to see when the radiology department could get him in. They came back saying that the radiology couldn't get him in today because of an emergency case they had been working since 6:30 that morning(it was around 12:30 at this point). They did have a guaranteed time for tomorrow morning at 8:30 so we started figuring out arrangements and calling in to our works. As we were getting things figured out for another overnight stay, we realized we didn't have enough oxygen in his air tanks to last us overnight and the ride home and we didn't bring enough formula to feed him for an extended stay. We got Kyler hooked up to the wall air to save what what left in his tank and they started working on getting him air and formula. Formula was the easy bit. It turns out that the hospital doesn't keep cans of air and had no way to fill the tanks we had. Then we also learned that the hospital couldn't help us get more air because of an issue with insurance. Oxygen is billed by the month as a service of sorts and since we already are being serviced this month by our company at home, they couldn't get us oxygen from someone else there. So I put in a call to our local company and luckily they have someone in the KC area that they contract with and they could get us extra tanks. We learned that the small tank we normally carry and typically last 8 hours, only lasts 2 hours on the higher flow. It makes perfect sense but it was something that never even occurred to us to think about needing more tanks for trip to KC. We wouldn't have even had enough to make it home, let along spend the night. After a while we got word that they were picking it up and would call when they got to the hospital with the tanks. We got our discharge paperwork from the appointment and got Kyler's feeding hook up and we were about to leave when they came back in and radiology had a new opening in a couple hours. Since we had started his feed we stopped it right away since he was supposed to not eat before, then we were told we could run it until 2 so he wasn't too cranky. Now we had two hours to wait around. We stayed hooked up to the wall oxygen and were still waiting to hear that our new tanks were here. It was time to head to radiology where they would use the fluoroscopy machine to see inside Kyler to place the GJ tube. Once back in the room I asked to stay and watch and they allowed me to but Mike went to waiting room to wait on the call about oxygen. The procedure to place the GJ was interesting to watch. After removing the G tube they pushed a tube that was but sturdy and had a small diameter in through the opening from the G tube and using the machine to see, guided it into the part of the small intestine where the tube needed to be. Next they inserted a small but strong wire in the inside of the first tubing. Then they pulled the first tubing out leaving only the small wire in it's place. Then they slid the GJ button over the wire until the tube part slid into place into the intestine. The button has a balloon like the g tube button and it was inflated and then reactive fluids were pushed in the though the G and J ports on the new button to check that it was working properly. I was surprised at how quick it was put in. Some things we have learned about the GJ tube that is different from the G tube is that you do not spin or rotate the button itself, this can cause it to slip out of the intestines. The button still has access to the stomach via the G port on the new button. We are supposed to flush with water every 4-6 hours to keep it from clogging. The extensions we use to connect the formula bag to the button tend to get pretty junky when on continuous feeds so we may need more of those each month. The button is held in place by a small balloon similar to the g tube but if it were to get pulled out , we have to take him to the hospital to get it replaced, we can no longer put it back in at home. One thing we have to check on is if our local hospital can put it back in or if it will require a trip to KC anytime it comes out. We finished at the hospital and contacted the lady we were getting oxygen from to get the new tanks to be able to make it home and she had to make an emergency stop at the Willey Ronald McDonald house so we told her we would come to her(we had just enough oxygen left in the tank we had). We got the oxygen tank from her and dropped of a couple bags of pop tabs to the house and then headed on the way. Now we are trying to figure out how to manage having him hooked up to food all the time(he does get two 1 hour breaks at some point in the day), what extensions we need, and if there is any else about a GJ that we don't know about yet. Tomorrow Kyler has a vision appointment in the morning and we will be spending the day trying to learn about the GJ. We already have questions and we will need to call our team to get answers on. Another thing we learned today was that Kyler's testicles have not came down yet and since they haven't by this point they will not come down on their own. This means that he will need surgery to bring them down. The tentative plan is to bring one down when they do the fundo surgery and then six months after that, they will do another surgery to bring the second one down. He is still in the safe period where hopefully his fertility isn't going to be compromised from being up in the canals too long which was good news to here. I am emotionally drained after today and am hoping and praying that the GJ helps Kyler and he is able to wean off the higher oxygen and get back to his baseline. I am also hoping that him being on continuous feeds isn't terrible to deal with, right now I am feeling pretty scared about it. One hopeful benefit may be reduced vomiting which would be great if we can get him to start vomiting so much. I have many pictures and videos to post but I can barely keep my eyes open as I am typing but I wanted to give an update so I will add pictures to this post tomorrow! Kyler has had a rough start to the new year. The lingering cold turned out to be a little more than that. On the 29th when Kyler went in for his flu booster and weight check, we had asked the doctor to check his ears because I had noticed him starting to grab at them a bit. The doctor had said they were a little pink but he wasn't concerned about them. As the week went on Kyler started running fevers, continued to vomit at every feed, and just wasn't himself. After a call to the doctor and a 2 hour wait for a call back, we were instructed to call our team in KC. I was able to talk to someone right away and explain what was going on. We were to give him Pedilyte feeds for 24 hours and then 1/2 and 1/2 of Pedilyte and formula as he tolerated it. They also told me to take him in and get his ears checked after I told them they were pink on Friday. They seemed surprised the doctor didn't put Kyler on medicine right away since they were a little pink already. We were assuming the fevers and symptoms were from his ears but we were advised to take him in for X-rays if he started vomiting more yellow bile(he had throw up some because he had nothing else in his body to throw up). I called our doctor back and got Kyler on the schedule to be seen that afternoon. I got him to the appointment and sure enough he had an ear infection and was given antibiotics to take for 10 days. I was pretty frustrated that I hadn't pushed to get Kyler medicine when they were starting to get pink and I am also kinda disappointed that our doctor saw something started and choose to wait and see. I can understand that position for most kids(Jaida and Gunner included), however we have a pretty strong family history of ear infections and tubes and Kyler has enough going on that it was something that could have been taken care of before it got worse. It was a good learning moment for me and from now on I know I will have to push for early intervention and not let them dismiss my motherly instincts so easily. One of the worse parts of Kyler not feeling well was the effect on his oxygen needs. His oxygen saturation levels were dropping to a high 80's to low 90's range even with oxygen on continuously. We were able to get approval to up his oxygen flow level from 1/8th of a liter to 1/4th of a liter. After starting the antibiotics and treating the fever, Kyler started to feel better and his oxygen needs were getting better. He is still needing oxygen periodically during the day but we have been able to turn it back down to 1/8th of a liter again. Kyler was feeling better and we worked back up to full formula feeds but he was still vomiting a lot(and still is). On Friday morning Mike put in a call to KC to get some clarification on what the GI team wanted us to do with reducing the reflux medicine he is on. We were told over the phone to only give it once a day but we thought it would be more helpful to reduce the amount and still give it twice a day but we needed to know if that was okay. After getting to talk to the surgery person on the team, she wanted him taken in for X-rays since he was still vomiting and she wanted to make sure that he hadn't torn his patch(which could cause him to vomit a lot). So Mike put in a message to the doctor and since they had already put in orders for an X-ray when they diagnosed the ear infection, they said to take him over at our convenience. It was not convenient. Mike got there and Kyler was taken back. The X-ray tech told him that she couldn't do the requested views and that you couldn't see what they were asking for with an x-ray. Mike had her call KC to talk to the surgeon and get it worked out with them. She couldn't call them so Mike had to wait for our doctor to call KC and for them to resend the orders or something, we still aren't really sure what the issue was. In the meantime the X-ray tech took to lecturing Mike on the harmful effects of radiation and infants. Apparently she thought he was there for fun and we just wanted X-rays for giggles. The whole experience with her was less than satisfactory and her bedside manor was terrible. Mike and Kyler ended up leaving and going home to eat and then finally they got the call to take him back in. This time they went to a different imaging center. Kyler wasn't pleased with that experience because they strapped him into a plastic holder contraption instead of letting Mike hold him in the positions like we do in KC. He ended up crying and fussing so much that he wore himself out and went right to sleep as soon as they were done. I was glad I didn't have to see that. By this point it is almost the end of the day and now we aren't sure when we are going to hear about the results. They now have to be sent to KC and then relayed back to pediatrician's office. Thankfully our surgeon in KC was anxiously awaiting the X-rays and called with the results. Kyler's patch looked good so that was no longer a concern for the time. However his left lung(the smaller one) was looking more gray than it was on the last X-ray. This meant that it wasn't as aerated as well meaning it wasn't getting good air flow through it. She advised that if he started running fevers again or started looking and acting worse to take him to the ER because it could be the start of pneumonia or a virus that affects the lungs. She also said that it shows up last on the X-ray. As Mike was relaying this information to me I start having questions and needed some clarification about the lungs and fevers. We also realized with all of the crazy back and forth with the X-ray mess, we never got the answer to the question about the medicine. So I put in the call to KC again. I was able to get clarification and found out that his lower saturations(from earlier in the week) were probably due to his left lung not getting as much air and now that he was looking and acting better the lung was probably getting better too but it would take longer for that improvement to show up on X-ray. We did get approval to do the medicine twice a day at a lower dose vs one larger dose once a day. During the weekend we had a little bit of excitement on the eating task. Kyler hadn't been feeling well enough to really even try eating orally but since he was feeling better, I had bought some cereal puffs and decided to give them a try. I broke them into tiny pieces and gave it a go. Kyler liked them and willing opened and leaned in for a bit about 10 times! Now this was literally 2 single cereal puffs broke into 5 pieces but it was 10 bites that he willing attempted! I was so excited. The next day he did it again! He did gag and vomit a couple times when the piece was a little bigger and "got away" from him in his mouth. He also did some exploration with different textures by playing with some different tools the SLP left him to work on oral stimulation with. He really likes a vibrating teether and a safety toothbrush. He also has a vibrating toothbrush and mesh(silicone with holes in it) food pouch. We haven't gotten to try to other things out much yet since he is still vomiting quite a bit. Kyler is getting a lot stronger and was practicing sitting up with some pillows as support and he was looking quite proud of himself! Within a couple days of this Kyler hit another milestone! He can sit up unsupported! I am so proud of him! He is now working on sitting and learning how to catch himself from falling over and face planting! It has been fun to sit him up on the floor and sit in front of him to interact with him and he is even reaching for toys while sitting! The nurse that we had before break has been back and we are loving her. She is doing great with Kyler and the other kids like talking to her(shocking I know :) ) as well. We have worked out a more simple and easier schedule for us and I have so much less stress than I had before! Today was the day for Kyler's cardiology appointment so last night we packed up and headed to Junction City to stay with my mom. Children's Mercy has some outreach offices scattered throughout the state and they happen to have a cardiology office in JC. This was nice for us to not have to drive so far and I was able to only have to take off a half day vs a full day of work. Kyler and Grandma Jody got to cuddle with each other for the evening. In the morning we got up and Kyle was puking quite a bit so after we finally got clean clothes on and into the car, we were on the way to the appointment. We made it there and found our way to the offices which are housed in the Geary County Hospital. We were the 1st appointment and were the only ones there. First up was vitals and then after he was undressed we were sent across the hall to a room to get an EKG. Kyler is a great baby and handles everything so well. During the EKG he was laying back really relaxed and just watched the nurse. He did complain a little when the stickers were pulled off his chest and stomach. Next up was the ECHO which is essentially an ultrasound of the heart. The tech tucked a blanket around his arms and got to work. Kyler handled that well too. He calmly laid on the bed and looked around. He ended up wanting his pacifier since he was missing his feeding during the appointment but he almost fell asleep during the ECHO. After the tech was done we were taken to another room to wait for the doctor to come in and explain the results. The doctor came in and after introductions he said "let me get a diagram of the heart". That statement made me start to worry. I feared he saw something not right with Kyler's heart and needed to show me exactly where it was, this is what the cardiologist in KC did when they did Kyler's other ECHO and other heart scans. Thankfully he only got the diagram to show me how the heart works and the flow of blood through the heart. After explaining that part, he said that Kyler's heart was normal and he didn't have any concerns. This was good news! He then went on to say that he doesn't need to see Kyler again for two, yes TWO, years! That was great news! He felt like that would be ample time to recheck for issues without it being too long to catch something if it came up. He is also available anytime if the team in KC feel like he needs to be checked before that two year period is here. It was so nice going to an appointment and getting good news! After the appointment we went up to my moms work to see some of her friends there. Kyler was a good boy and didn't vomit on any of them! It was time for Kyler and I to head home so after dropping off my mom, we hit the road and made it home at about the same time that Gunner was getting home from preschool. I pretty much set Kyler inside(still in the carseat, fast asleep) and turned him over to the nurse and grabbed my lunch Mike had brought home for me and got back in the car to head into work. When I got home this evening the nurse reported that Kyler had puked a lot today and she was kinda surprised at the amount. I'm feeling like a lot of it is due to choking on mucous but it it doesn't get better soon we may have to make another trip to the doctor to make sure his ears are cleared up and see if there is anything else that can be done to help him get over this junk. One option we are going to look into is a whole home humidifier, I have read a few things about them and am really looking for anything to help right now. I'm finding it hard to rid our house of sickness and it seems to just cycle through us all. I am on day two of no voice(which makes teaching fun, but my students all just started whispering back to me so my classroom was pretty quite!). This evening I also had a meeting with the lady who does the eligibility part to qualify Kyler for the TA Waiver that allows us to get in home nursing. Since Kyler is still 100% dependent on the g-tube for nutrition and he has added oxygen, he continues to qualify. Now we wait and try to get rid of this sickness(which might be hard with the cold weather moving in) and wait for the end of the month when we will go to KC for his next appointment with the Special Care team. Thank you all for your continues prayers and I pray you all stay healthy and can avoid all of the sickness going around right now! |
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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