Day 2 of 2 for Kyler's appointments. We have always known that Kyler was SPECC1L(genetics humor) but today we learned that he is even more special. We arrived at the hospital after getting packed up and checked out of the hotel. As we were starting to get our things together to head into the appointment we hear our name being said. It was a friend who is currently at Children's with her baby. We visited for a little bit and through our conversations we learned that they were looking at having a G tube placed in the coming months. We were able to share our experience so far and even showed her Kyler's! We also got to share some information about the TA waiver and some financial tips we found through going through our stay there. She was able to walk away with some helpful ideas to look into and it felt nice for us to be able to help someone else have an idea of what to look into! After cutting our visit short to be able to make it to our appointment, we found our way to the Genetic's Clinic. We were able to visit a new part of the hospital for this appointment! We got checked in and taken back to an exam room. The genetics team came it and it was a new doctor, the genetics counselor we worked with prenatally and through the NICU stay, and a student doctor. We first reviewed his history and filled them in on any changes and how things were going. The doctor then spoke to us about the SPECC1L gene and what they were able to find. We learned that they could only find 5 documented patients with this particular gene mutation. Like I said before, Kyler is special! Out of those 5 patients, 3 of them were labeled with the Opitz syndrome that I mentioned in an earlier post and the other two were labeled with Teebi syndrome. There just isn't a lot of information out there about this particular gene. What the team discussed with us was that they would lean more towards Kyler having Teebi vs Opitz due to Teebi having a higher instance of just physical differences whereas Opitz is linked more to physical and cognitive differences. Some of the physical differences that Kyler is showing is the cranial bones are not regular but he has a fairly normal head shape. His frontal plates are not close enough together and his soft spot is still quite large for what it should be. He has wider set eyes, undescended testes, an umbilical hernia, and the CDH is a physical deformity as well. The doctor talked about how there wasn't information so really they are kind of learning from Kyler and didn't really have much they could tell us beyond that information. I ended up telling him that it didn't really matter because Kyler is who he is and it didn't really matter if we had a name for it or not. The doctor also decided that he wanted to refer Kyler to a cardiologist based on some of patients showing cardiology problems and while the sample wasn't big there wasn't enough information for him to rule it out and he would rather play it safe. Along with that he would also like to get an abdominal ultrasound. We have asked that this stuff go through the special care clinic because it just makes things easier for us and keeps everyone on the same page. We did have some kinda funny moments during the exam. Kyler was very well behaved and cooperative for them and the doctor was manipulating him and telling the counselor measurements and features to write down for his genetic profile. During the assessment he was looking at Kyler's eyebrows and stumbling for the words he wanted to say and finally I offered "bushy" and he let out a chuckled and said "yes, bushy". I could tell he didn't want to offend us by saying it but didn't know how else to describe them. I laughed and told him I wouldn't be offended and that's how I describe them! Then he was trying to describe his hair(its thin and sparse) and the counselor and him began laughing because she likes to razz him about his descriptors and claimed he liked to make up words while doing his assessment. After the exam I was curious about how or if Kyler's genetic information would be use for other people who have the gene mutation or CDH. Basically Kyler's information(symptoms/appearance) will be used by the hospital if they have another patient come through who shows the same or similar characteristics but it won't be shared at a larger level at this point. We will not be doing any other appointments with Genetics unless Kyler presents and new symptom or difference that we feel like they need to know about and there isn't anything else they can tell us about Kyler at this point.
After the genetics meeting we had some time to kill before the hearing assessment in the afternoon. We decided to head to the 3rd floor to see if we could catch our prenatal coordinator or the doctor who delivered Kyler because we would like pictures of Kyler with them. As we were making our way there I noticed a missed call that said it was from "Children's Mercy Hospital Adele Hall". I thought that was weird since we were there but maybe genetics needed us to come back for something. I ended up having a voicemail and it was from the Children's Critical Care Transport coordinator asking me to give her a call back. My first thought at hearing that was "do we owe them so much money for the flight that they are personally tracking us down?" I went ahead and called her back and let her know we were currently at Children's. She then decided to just come meet us up at the Fetal Health Center. We still had no idea what she needed. We got the Fetal Health Center and checked with the receptionist but unfortunately neither of the people we were hoping to see were working today so we weren't able to get the pictures this time. We had a seat and waited for the other woman to come to where we were. She found us and then began telling us that she would like to do a feature story on us and our experience with getting medically transported during labor. We learned that the critical care transport is a pretty new program for them and they have only done something like 40 maternal transports. We apparently had a crazy enough story for them! We agreed but don't know exactly what all it will entail. They will be having someone contact us who will do a write up and it will be published somewhere. We will find out more later. We also got the chance to visit about our experience and we talked about some ideas for streamlining the process for hospitals like ours who aren't used to that type of thing(remember we had to wait a very long time for them to call to ask for the transport even though we had nurses on the phone from Children's). She liked some of the ideas we threw out there so that was cool! We then left and went to find some lunch and wait for the next appointment. We drove over to the other campus on College Blvd and ended up eating at Joe's BBQ and then killing some time by checking out The Container Store. I love that store and get excited of the littlest organizational things! While we did our browsing, Kyler got some Kangaroo Pouch time and I think he enjoyed being out of the carseat! It was finally time for the hearing test. Kyler was to get an ABR which stands for Auditory Brainstem Response test. For this test Kyler had to be asleep and hooked up to wires that read his brainwaves upon hearing sounds presented through tiny headphones. We got into a room and Kyler got the wires stuck to his head in specific spots and the headphone pieces put in his ear. Then they left us alone in the room with the lights down to get him to sleep. It took a little bit to fall out and he was wanting a pacifier so bad. Unfortunately I didn't have one on me so I got the next best thing, the nipple off of his bottle. I used my finger to plug the hole so he wasn't sucking in tons of air and after about 20-30 minutes he finally fell asleep. They came back in and began the test. After a while I had to put my phone away because they were picking up some interference and couldn't get his scores. Putting my phone away didn't help and they tired some different settings and explained that sometimes the machine was pretty sensitive and could pick up machines being used in other parts of the building. Kyler started fidgeting a bit and all of a sudden the interference stopped and they were able to continue and finish the test for his left ear. Everything looked perfect on that side. During the process at some point the right sided headphone fell out of his ear so we had to move him to get it put back in. That process woke him up. I tried and tried to get that boy back to sleep but he wasn't having it. Eventually the audiologist gave up and decided to do a screener on the right side because he could be awake for that and we would need to redo the right ear next time we were up for appointments. She got the screener done on both ears and he passed the screener! Two and a half hours later we were done with that appointment. As we were getting loaded up and ready to head home I remembered that we had forgotten to pick up Kyler's prescription refill from the main campus so we had to head back across town to get that before heading home. We got home and were able to get the big kids into bed(after fighting them to stay in bed a little bit) and I got in some more snuggles with Kyler. I am heading back to work tomorrow and feel nervous just like the first day of school(because for me it is)! I am excited to meet my new students, catch up with friends, and back to the job I love but I am simultaneously really sad and nervous about being away from Kyler. I am thankful for the well wishes sent my way wishing me luck tomorrow! I will now be working on learning another new normal. Tomorrow I will have to find time to talk with the pediatrician about how I think the formula change is going and find out what plan we want to go with. I have seen a difference in what Kyler's vomit looks like but I am not sure if it a good change or a bad one so hopefully his pediatrician can give me some guidance on that! It was a very busy two days and we should have a 2 month break from going to KC now! Thank you all for the continued prayers and well wishes and if you could please say a prayer for our friends baby Benedict that he makes good progress and has a conflict free path to recovery!
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Today was day 1 of 2 for Kyler's appointments. This morning when Mike got home from work he got the big kids loaded up and dropped them off at school. When he got back we started getting our things together to head to KC. It is amazing how much stuff we have to pack for this little man, I am so glad we have a van to carry it all! We need his diaper bag with the essentials, the pack in play for him to sleep in, the Boppy to prop him at an angle, extra blankets and spit rags(like a lot) for when he pukes everywhere, clothes(and lots of them), the pump pole and all his g-tube supplies, pre-measured water and powder formula for his specific calorie need, and finally bowl for his rice cereal. Then we had our own bags plus our brief case that holds all of his important documents! We headed out of town shortly before Gunner got out of school. The drive to KC was uneventful and Kyler slept the whole way! We arrived at Children's and headed in to the clinic. Mike asked if I wanted to take the stroller in(oh we packed that too!) but I said no we didn't need it. I was wrong. Next time we will use it, it wasn't difficult carrying Kyler but between carrying the bags and blanket(AKA Puke Protector) around with us it would have come in handy. We got checked in and were taken back pretty quickly. They took his measurements and vitals before we went to an exam room. Kyler is weighing 12 pounds exactly and his oxygen levels were jumping from low 90s-95. We got back to the room and Kyler was kicking around on the exam table and talking up a storm. He was being so loud that a nurse walking by heard him from the hallway and stopped in to say hello. Kyler chose that moment to become mute and just stared at her. The team came in and he was talking for them. There were four doctors/nurses so we had quite a group happening. There is a neonatologist, another doctor(not sure what her exact title is), a APN for the NEON clinic and an APN for the surgery clinic. Pretty much the first thing they said when they walked in was "well he's had quite a week". They had gotten the reports from being hospitalized and our trip to the ER. So first up we talked about all of that business and I showed them the pictures of what he was vomiting up. We talked about the plan that we had set with Dr. Harvey(Kyler's Pediatrician) and they agreed that was a good plan. They also mentioned trying a different formula which is the one Dr. Harvey had mentioned going to if Kyler doesn't react well to the Similac. Then it got a little crazy. Mike was on one side of the room with Kyler and I was on the other side with one of the doctors and then all of a sudden almost everyone is having conversations about different things for Kyler but yet we were all talking together as well. They apologized for everyone talking and I laugh and said I teach kindergarten and it was nothing! We discussed if there was a need for a GI doctor to be on the team and they felt like since he was growing and making gains that he didn't need one at this time. We also got clarification about the RSV shot they want Kyler to get that is only approved for certain kids and they reminded us that we will need to get the flu shot as well as anyone who will be around him a lot. We then talked about his oxygen levels and how they had been dropping while he was admitted last week and how they were a little lower at check in today. They suggested we do a home study where Kyler will be on monitors(pulse oximeter) for 4-5 days and they will remotely pull the data and decide if he needs a little more support either all day or maybe just when he sleeps since that is when we saw his numbers dip. They said that he needs that oxygen to be able to grow well so we will be waiting for a medical supply company to call us and get us one in the next few days. Unfortunately our current medical supply company doesn't do respiratory equipment so we will have another one to work with for at least a little while. During all of the discussion the neonatologist did a physical assessment with Kyler and noted his better head control and such. I gave them an update about what we were going to be working on with ICD and had to laugh a little when I went to show them one of the exercises that Kyler struggled with yesterday and he did it perfect(holding him on his tummy and having him look up instead of dropping his head downward). After all of the discussion and plans got hashed out most of the team left and the surgery coordinator, Kristen, stayed and taught Mike and I how to change out the G tube. Turns out we were supposed to be checking the ballon water level at least once a week but had never done that because nobody ever told us that when he got it. It's actually pretty simple and we both took a turn removing the tube and replacing it. It comes out very easy and then you feel a small little pop of sorts when you push it back in. Kyler handled it all like a champ and didn't fuss at all while we were practicing on him! Next they sent us to radiology for an X-ray of his chest so they could check on his lungs and diaphragm. It was a pretty quick stop and while I was with Kyler getting the pictures, Mike ran to the 3rd floor to see if we might be able to catch a couple of the prenatal people we wanted to get a picture of Kyler with. Unfortunately they weren't there so we will try again another day. After we got done with the X-ray we met back up with Mike and headed to the surgery clinic so that we could see the X-ray results and pick up a couple G tube supplies. The X-ray didn't show any change from the last one(about 2 months ago) and we could see a good diaphragm line so the patch is holding! We were done with today's appointments and headed to go find a hotel since the Ronald McDonald houses were all full. We had made dinner plans with my friend Brandi so we found hotel and got checked quickly before heading for dinner. Kyler was a sleepy guy during dinner and then was a little cranky towards the end so we parted ways and headed to the hotel. We have two separate appointments tomorrow at two different Children's locations. The first is the genetics meeting and I am not really sure what all this appointment is about. The second is a 1-2 hour hearing test. Good night all! What a week! After getting sent home on Thursday with things looking good, Kyler had some pretty good days with normal vomiting. Until Sunday. Sunday afternoon he began vomiting lightly brown color again and each time he vomited it got darker. After the 3rd or 4th time I pulled out his discharge paperwork and called the surgery clinic number...no answer. Next step was to call the normal nurse line listed. After explaining why I was calling I was told I would get a call back from a nurse. I get to talk to a nurse and I explain that he was just there for vomiting the brown color and that it had started back up and went over more of his medical history as well as letting them know that he is followed by the NEON special care clinic. The nurse takes the information and tells me she is going to have a doctor from the special care clinic call me back within 15 minutes. While I am waiting we start packing bags just in case. The doctor calls and says that the surgery team will want to see him. I asked if we could skip the local hospital and just drive him down ourselves(saves time and money) and she okayed that. We finish throwing things together while waiting on my sister to come hang with the kids until I could get a hold of one of the grandparents to come stay with the kids to get them to school in the morning. By this time it is 7:30-8:00 at night. The big kids were worried about us leaving and it took some prying to get Gunner to let go of me so we could leave. We head out and make it to the hospital's ER at 10:30. We get checked in and told them that we had talked to one of the nurses on the help line etc. Apparently that didn't matter too much because we were waiting for an hour to even get in the room to have vitals taken. Thankfully Kyler was sleeping and I was able to leave him in the car seat because the ER was PACKED, and there were multiple kids with masks doing a lot of coughing. I was super paranoid that he was going to catch a respiratory virus in the midst of all of that so I kept a blanket covering the carseat to hopefully minimize any transfer via air flow. We get taken to a triage room for vitals and are told to go back out and have a seat. I am glad I have learned to ask for things and speak up for Kyler because I asked initially for a mask to help protect him from the germs and explained that he is at high risk for respiratory issues with only having one lung. They said they had a mask but didn't think it would fit him but we could try and they said they had a secondary waiting room with less people that we could sit in! They took us deeper into the ER to the other waiting room and we were the only ones in there! Before long they brought in two other kids and their parents but both of them were in for something broken so they didn't appear to be having any respiratory issues! We sat in that room for another hour or two-I lost track of time- while waiting for them to have a room open up so we could actually be seen. Kyler stayed asleep most of the whole time in the waiting room and I was thankful for that and my smart phone while we waited. Eventually we made it to a room and a nurse came in to take his vitals(and he was waking up at this point) and then left while we waited some more for a doctor. The doctor came in and we retold the reason we were there again(I think we had already told it 2-3 times at this point) and she left and was going to talk to surgery. For the next couple of hours we saw a couple different people who we had to tell our reason for being there to and waited on someone from surgery. Finally they order for an g tube study to be done to check to make sure it wasn't pointing to his intestines again. We got that test done and then sat and waited some more. It was not 4:00am and the surgery doctor finally came in. It was the same surgery doctor we saw earlier in the week and he said the study looked good and things were going in the correct places. He then wanted us to feed him and see how Kyler tolerated it(of course he didn't throw up at all while we were there) and if he did fine we could go and if not they would decide what to do next. He also noted that we lived so far away that they could admit Kyler for observation overnight(? it was already morning but you know) so that Mike and I could get a little sleep or we could sleep in the ER for a couple hours before heading home. We declined and choose to just get out of there as soon as we could. The doctor also told us that the brown is from some pretty serious reflux and that we would need to follow up with his pediatrician to see what we could do about that. Also when we were talking to him about why we were back he said that he would have been who the nurse howling doctor talked to and nobody talked to him when I called in, so the doctor who told us surgery wanted to see him didn't have her facts straight. He did tell us what to do next time to be able to talk directly with the on call surgeon which will be nice for any future issues! We got Kyler's feeding going and then waited. He ended up throwing up some but it was "normal" white colored vomit so we were pleased with that. We let the nurse know and she got the okay from the doctor to release us. It was 5:30am as we were walking out the doors. We made it home around 8:00 in the morning, just in time for Mike to take Jaida and Gunner to school. We both were extremely exhausted at this point and Mike had to work Monday night. As soon as the pediatrician office opened I called to get him see for the follow up and they could get us in mid day. My dad was still at the house(he had came over to relieve my sister so she could get to work in the morning) and he offered to pick Gunner up from school since his pickup would overlap with the appointment. This was so nice and allowed Mike to finally crash so he could go to work that evening. Kyler and I hung around the house waiting for his appointment and I got a short 20 nap in between his feeding and needing to leave. Once at the pediatrician's office we didn't have to wait too long. We visited about the issue and made some plans to try to get the reflux under control. Step one was increasing his medication back to 2.5ml twice a day. Secondly we decided to try a different formula. We decided to try the Similac Sensitive that he had been on in the hospital before they took him off it due to the multivitamin curdling it. We also took him off the multivitamin to avoid that issue. Thirdly I asked about starting solid foods(purees) early(as in now) to try to give his stomach connects with more weight and hopefully get some stuff going down his esophagus besides having vomit and bile being the only thing touching it. His doctor agreed to give it a try. After we talked about the plan we also talked about what the next steps would be if these changes didn't work. The next step would be changing formula again to one that is already broken down some. If that didn't work we would be looking at another surgery. This surgery is called a Fundo and I have seen families talking about it on the tube feeding Facebook group I belong to. Basically this surgery pulls the stomach up over the end of the esophagus and tightens around it making it very hard to vomit. It is a last step type of thing and we would really like to avoid it if possible. We love our pediatrician and are so sad that he has announced his leaving(to go to Children's to work in a slightly different field) and we will have to find another to fill his shoes. Timing of all of this is pretty good(God I see what you did there :) ) because we go down tomorrow for is check up with the special care NEON clinic and the doctor who works with all the CDH kids. We will be having some discussion about these issues and trying to find a solution. We will also learn how to change the G tube ourselves. We have a list of questions to go over and one is going to be asking about the need to see a GI specialist if his gut/reflux is so bad that its causing bleeding or something to make brown vomit. Also I will be trying to catch a sample of the brown next time he vomits that color so that we can have it tested for blood so we can know exactly what he is vomiting up. After his follow up appointment with the pediatrician I met my dad and Gunner for lunch before going to the store to but rice cereal. I opted for the apple and banana flavored kind in hopes that Kyler would be pleased with the taste and maybe want to eat it! At his next feeding I mixed a little up. Kyler had no idea what to do with it. He gummed it some and swallowed a little but then he gagged on the next bite. I only tried a little and then gave him the first batch of the new formula. He seemed to do fine with the new stuff with just a few small spit ups from the evening and over night. Then this morning he was a puking monster, projectile vomiting 3-4 times within an hour of getting his 7am feed. Ugh. I had to remind myself that it may take time for his tummy to adjust to the new stuff. Today Kyler had his first officially PT and Nursing appointment/work session through ICD. Kyler was asleep when they arrive after having gotten a 1/3 of his feeding a little early so that he wasn't starving but wasn't so full he would puke all over them(aren't I nice :) ). After filling them in on the week we had, Shayla(PT) got Kyler up and moving a little bit. Kyler has improved on his neck strength and is hold it pretty nicely and we were given some new exercises to do to work on holding his head while he is leaning sideways as well as when he is leaning forward. He was pretty engaged with both Shayla and Kim(nurse) and even talked to them a little bit. He is getting his hands up to his mouth, starting to attempt to reach for a toy, and his tracking is good. They were able to see through his skin tone when he was getting exhausted from the work and he began to get a little fussy. He had started sucking on his hands during the session and was doing some really good sucking sounds. After they left I got the rest of his formula into a bottle and we gave it a go. I had to pull a fast one and stick the bottle in where his hands were but after a little while he began chewing on the nipple and eventually rotted between chomping and a couple sucks. He ended getting 5 ml from the bottle! I then took the remainder and mixed in a little bit of rice cereal and pushed it it slowly. After that we did snuggles and I told him how proud I was of him for working hard and taking the bottle and he gave me a sleepy grin or two! After a little rest I had to get things ready to take Kyler and Gunner to my classroom to visit with my sub and get some information before starting back to work on Friday since it will be too late once we get home from KC on Thursday evening. It was nice to see some friends and Kyler got some loving from some of the people who have been praying for him and cheering him on! Jaida got dropped off to me after school too. Kyler was due for a feeding while we are in my classroom so I mixed in a little rice cereal and hooked him up. It didn't take long for him to fall asleep while being held and rocked with that full belly! Once we were back home and it was time for his next feed I tried some more rice cereal by mouth. He did little better than the first time and got some swallows in but then eventually gagged on a bite and threw up any he had managed to eat. So I mixed the remainder in with the rest of the formula and hooked him up. So far he has not thrown up since this morning and only had a couple really small spit ups! I hope it continues this way! He also has been more interested in the pacifier and I can hear his sucking on his hands from a room away as I type! I pray that these changes work for him and we can avoid the specialty formula and surgery. Thank you to everyone who has been praying for him and for everyone who has helped us out in one way or another, we really couldn't do it without all of you! We got to come home today! Kyler had a good night and only woke up when the nurse came in and did his assessment while I hooked up his feeding. I took first shift of doing his feedings and then Mike took over allowing us both to get some stretches of sleep. Things are very different on the second floor where Kyler's room is. Instead of having one nurse who was doing everything unless we asked to do it we had a nurses station outside of the room and we had to seek out what Kyler needed. When it was time for his feedings we had to ask for his formula, for a bag, for his medicines, etc. The nurses were very helpful and would periodically check in to see if we needed anything but it was up to us to let them know what Kyler required so it was a change from being in the NICU. We didn't like leaving Kyler pos besides the first morning when we left to get breakfast, one of us was always with him. We found out about getting a gift card from the cafeteria that could be used to order room service so we wouldn't have to leave for meals anymore. That was very helpful and I am not sure if it would have even been an option while he was in the NICU but it would have been nice to know then! Kyler was pretty happy when he woke up and was kicking and playing when he got a visit from our friend Shana who works at Children's! After a while the nurse came in and removed his oxygen to see how he did without it. He still had some numbers dip some but a lot of the dipping was from his kicking around. We did discuss maybe bringing home some oxygen for night support but with the nurse saying he was doing fine we decided to wait and will talk with the special care clinic about it next week when we go for his regular checkup. After he was doing fine the nurse let us know she had his discharge paperwork so we could begin getting out of there. We had to postpone leaving just a bit because we had ordered food and Kyler was needing his feeding as well. After we all got some food in us we packed up our bags and walked out. It was a new experience walking out without a nurse escort to the van. When we left the NICU the nurse had to visibly watch us put him in the car and when we left today they had us sign the paperwork and it was up to us to walk out and leave. Kyler hadn't thrown up once since the ER at Children's and we were pretty excited about that, then as we were loading him into the carseat he decided he needed to throw up a little bit. It wasn't a lot but surprising after not vomiting since the brown stuff was coming out. He fell right asleep and slept the whole way home. Unfortunately we came home to a sick daughter. Jaida had been running a fever and not feeling well so she got sent home from school. We had her staying in her room or the basement and far away from Kyler. I am hoping she doesn't give him whatever she is battling and I am looking into ordering some face masks for her to wear and for future use to help minimize Kyler's exposure when any of the rest of us get sick. Since Jaida had to leave school she had to miss her schools color fun run for the marathon and she was very sad about that. Kyler was a little bit cranky once we got home and then he threw up a couple times throughout the evening. We don't know why he started vomiting again but thankfully it was normal milk colored and not the nasty brown. We are wondering if it may have had to do with taking a long car ride right after eating. Kyler has been chewing on his hands a lot lately and we are thinking he is beginning to teethe already. Parts of his gums are beginning to look whiter than other parts of his gums. It is nice to be home and we are thankful the cause of the brown vomit wasn't something worse. This journey with him is going to be a long and interesting one. My best friend sent me a message telling that she saw a baby born on Gray's Anatomy with CDH and I decided I wanted to see it. The show didn't focus much on it and didn't explain it but they delivered the baby via c-section and then put her on ECMO. I knew I would cry at it but watched it anyways, in fact I started crying when......SPOILERS...... the mom was in a car accident while pregnant. Then I bawled even harder when they talked about the baby not breathing and intubating and some of those terms that were and are real life for us. On the show they did the repair surgery the same day the baby was born and really within an hour of her being born which is totally not real life but you know how TV doctors can work! I recently saw an article about moms of babies who were premies or NICU babies having some PTSD. I don't feel like I have PTSD, at least what I think of PTSD but I do have a much higher anxiety and fear of Kyler being hospitalized now. Tuesday when we went to the ER it took a lot to hold back the tears and not break down and to keep myself from thinking the worst. I am so thankful for all of our family and friends that have and are supporting us and just sending prayers our way. It really does help us remain positive and be able to process and handle things that our thrown our way so much better. So again, THANK YOU ALL so very very much!
We are hoping for a calm and uneventful week ahead and that Jaida gets over whatever it is she has and that Kyler doesn't catch it! We will return to KC next week for some check up appointments over two days and then I am planning to return to work after those appointments since Kyler had other plans than letting me start back this week! I am hoping I don't need to do another blog post until after the appointments because it will mean he had a calm week! Around 12:30 we finally got a room. His room in on the 2nd floor on the burn unit which they use for over fill. Once in the room we got Kyler a little sponge bath and he finally urinated a little. The doctors came in and said they wanted another X-ray to see how the contrast liquid was moving through his body. They also tried draining the balloon that holds the g tube in place to see if that made a difference. It didn't make much of a difference and the liquid was still going right to his intestines. We left the g tube deflated but taped down and the vent connected for draining. Around 2 am we finally were able to lay down. Luckily the room he is in has a make shift bed bench and a recliner and we are able to sleep in the room with him. Kyler slept all night and his feedings are on hold for now so we were able to sleep the night through. Around 6 am the surgery team came in and we got to see a familiar face. They weren't sure what to do since even with the button deflated the contrast was still going right to his intestines so it was suggested to try a new button. Kyler was scheduled to have a new one placed next week as part of the study we were doing with the hospital and the one he was to get is what they wanted to try on him now. They wanted to give it a try because the balloon shape is a little different than the Mickey button, this one is called a Mini One. It is lower profile and has the different shape of balloon is a little flatter and not as big and round as the Mickey. They are waiting for the contrast liquid from the last couple of tests to clear his body before he can do another test to see where the liquid goes with the new button. So far this morning Kyler has been alert and talkative and not puking(mainly because he hasn't gotten anything for food since 1:00pm yesterday) and is only getting IV fluid for now. We have gotten some toys for him and a fun mobile for him to play with. Since he is all corded up again we are able to hold him but its hard for him to move around too much. He wasn't doing too bad on breathing but was having some difficulty with numbers dropping while vomiting and being in the ER and he has needed it a little bit this morning especially when he sleeps due to his numbers dropping some. We may need to look at getting oxygen PRN for home, especially with cold season approaching. Thank you all for the prayers for Kyler and if you could please say a little prayer for Jaida and Gunner who had some pretty good separation anxiety after our last stint here. We had to leave without getting to see Jaida and Gunner was a little worried as well. I will update more as the day goes on! 1:30 pm Update "You're back." Another familiar face from the surgery team today. During their round he explained they are still just waiting to redo the contrast test. If all looks good on that, Kyler will get to start his feeds again. The doctor felt that the new button shouldn't shoot right into the intestines and should solve the problem. I asked about what was causing the two different colors(brown puke, and neon green residual) and he said that if the g tube was sending it straight to the intestines than Kyler's stomach was probably getting irritated and bleeding a little and that blood mixed with stomach acid could be the cause for the brown vomit and the reason we weren't really getting that brown from pulling out from the tube was because of its position and it was likely pulling contents from the intestines not the stomach and that is why we got two different colors of things. He is pretty hopeful that the new button will be the solution so we just have to wait and see what the test shows. I am hoping that is the case but if it isn't I do not know what the next step is. I think if the button's position is the problem and the new kind of button doesn't solve it then we may have to look at surgery to move his g tube but I don't know that for sure. He did also mention that the new button may help with his vomiting due to an issue with it blocking the pyloric sphincter and that would be an amazing change if it does end up lessening how often or even how much Kyler throws up! Back to waiting for the test! 9:30pm update Around 2:00 they came to take a quick image to check that the contrast dye has left his system and after that showed it had cleared we had to wait a little bit longer for them to call to take Kyler down for the contrast test. We didn't have to wait too long and headed dosn. This time I had to help hold him in the correct position with one of the nurses since there was only one there with the radiologist. We got Kyler in position and connected his tubing and the nurse began to slow push in the dye while the radiologist took images of the movement. From that test it looked like the new Mini one button was allowing the liquid to enter the stomach instead of going right into the intestines! This means he got the all clear to get formula! He was going crazy on the pacifier so we asked to get bottle first and got the ok. They ended up bringing prepackaged formula because the milk kitchen that prepares the formula normally would take some time to mix his special 24kcal blend and Kyler was just way too hungry to wait! It took a lot of encouragement but I was able to get him to take 5mL by bottle! I saw some interesting things while he was attempting the bottle. First, he knew instantly that it was different than the pacifier. Secondly, he had a startle reflex to drinking the milk when he really had a good suck. At first he was sort of chewing on the nipple and then would swallow what came out and then he got annoyed so she started to suck and it was like the milk flowing out and hitting his throat and mouth surprised and scared him a bit. He was so hungry and tired that as soon as he got that little bit in his tummy he passed out. We hooked him up and tube fed the rest. He was a pretty content little boy after that. We are finding already that the Mini one button is a little harder to get connected at this point. The Mickey was pretty easy in lining up the marks, pushing it in a bit, and then twisting to lock. What we are finding with the Mini is that you have to push in quite a bit more firmly until it snaps in place and then twist to lock. I'm sure the Mini will get easier for us as we get used to it though. I am excited about the mini tubing though, it seems nicer and the ends and connection points have glow in the dark pieces to help with nighttime feedings! Kyker tolerated his first feeding well but soon grew hungry before it was time for his next feeding since he hadn't eaten anything in 24 hours before that one feed. The pacifier wasn't settling him and just holding him wasn't doing anything for him either so we asked for the correct formula to give him it a little bit early. Unfortunately the milk kitchen still hasn't sent it up yet and we were also waiting on his meds that needed to be given with the next feeding. Kyler kept getting more fussy as we waited so he got to nurse a little bit. He has been getting to nurse for the oral stimulation and I think it's a comfort thing for him as well. I think he is getting a little bit of milk but not enough that it overwhelms him when he latches, which for him is a good thing. He was able to settle down after a bit of nursing and I was able to lay him down so that I could eat my supper that had been sitting on a tray waiting for me. Finally as I was finishing up eating they came in with his formula and were getting the meds. We had to warm it up so I finished eating. Kyler was still working on the pacifier so we attempted a bottle again, he wasn't letting that happen this time. I think he was really too ticked off from having to wait so long for the milk. He got hooked up and as I held him he was pretty fidgety and fussy. It took a couple songs, some movement limitations, and rocking and he fell asleep and snuggled as his belly filled. Currently he has kept down both feedings and has seemed to feel pretty good! Right now we are looking at probably going home tomorrow unless something changes with his vomiting or oxygen. They currently have him in .5 liter of air due to his numbers dropping while he slept, he has been on it for a good portion of the day. I am not sure if the doctors knew that so I asked the nurse to tell them. We will see what thet say at rounds in the morning. So tonight should hopefully be uneventful and in the morning we will did out if the doctors are concerned with his lower oxygen numbers and what a plan with the oxygen will be. If they aren't concerned I imagine they will begin the discharge process which from our experience last time took most of the day. Thank you all for the prayers our little warrior!! Mr. Kyler turned four months old yesterday and apparently today he decided he missed Children's Mercy. Our day started with a visit to his pediatrician for his 4 month well child check. It was strange filling out his developmental sheet and marking so many areas "not yet", so very different from our experience with the other two kids. He is now weighing 11 pounds 9 oz. he gained some weight but not at the rate they want to see and he is now in the less than 3%ile so we are going to add back in the feeding we took away as well as increase his volume per feed. The plan is to work up to 125 ml per feed. He also received his 4 month immunizations while we were there. He wasn't too happy about those. Everything else checked out and we headed home. After getting home and getting his food started through the pump he was looking fairly calm but wiggling a lot. I assumed it was from discomfort from the shots. Not long after his feeding was over and I had him snuggled up on my chest he vomited. It was brown. I don't know if there is anything scarier than watching your child vomit up nasty brown but if there is I don't ever want to see it. I ran and got Mike who had just layer down with Gunner for a nap and had him come look. I then tried to vent him and I couldn't get anything out of the tube, then I saw a bright yellow green color and I started to panic a little inside. That is the color they told us last week to watch for as a sign of reherniation. So here my baby is vomiting brown nasty stuff and his tube has bright yellow green. I get him in the car seat and get shoes on Gunner and then we hop in the car and start heading to the doctors. We figured we would go to his pediatrician since we were just there. We barely got down the road when he threw up again, and it was brown again. I jumped out of the front seat and squeezed between the car seats in the back and we kept going. By the time we got there the doctors office was closed so we crossed the street and went to the ER. He was seeming to feel okay while there and they took x-rays to check him out. We had Grandma and Grandpa come pick up Gunner and we waited and waited. The team there said they didn't think he had reherniated but they thought he might have a partial bowel obstruction. We have them the number for our Children's Mercy team and they discussed the stuff with them. We were told that we could be admitted at home and to just watch him but if he ended up needing surgery, he would have to be sent to Children's. Then Kyler proceeded to puke a couple times there for them to see and they felt like he needed to head to Children's. So they called for an ambulance and my dad took Mike to pick up the van that was in the shop and then to the house to pack bags for Kyler and us. After a while I got loaded onto a stretcher while holding Kyler and we got loaded into the ambulance and headed to KC. We didn't get the lights and sirens so it took as long as a normal drive would but we had a nice paramedic who took good care of him on the way. Kyler slept most of the way. They had to periodically check his blood sugars because at the hospital they were down to 52 so they had him hooked up to a solution to bring his numbers up. While we were almost to Children's his number was up to 87. We then arrived and got admitted into their ER. Once admitted he started getting checked out and I retold our day about 15 times and showed them the pictures I had. Mike arrived not too long after we got checked in. They didn't get the X-rays from Salina so they ordered to have some taken. We got wheeled down for that and Kyler wasn't very happy for those. One time they had him in sitting position with one nurse holding his arms up over his head and I was holding down his legs. They also took pictures of him on his side and laying down. They were looking to check for reherniation or bowel obstruction. After those were done we got wheeled back to the ER room. The doctors came in and said they weren't seeing an reherniation or obstruction. Kyler has successfully confused the doctors at this point. They put in a call to surgery team and they came in and visited with us and decided they wanted to do a flourosocopy where they insert a contrast dye and watch it go through his system. We waited until they called and started our way down to the radiology room. On the way there we almost had a big accident. The nurse was pushing the bed and pulling the IV pole and somehow the line attached to Kyler's scalp got snagged and ripped apart. Thankfully the way the Salina hospital inserted the IV port allowed the line to break apart rather than ripping open his head and pulling the IV out. We got ready to move again and I made sure to grab a little bit of the line and I'm sure glad I did because as soon as we started moving it started pulling again. Another nurse suggested she just disconnect for the trip so that is what we did. We made it to the room and they got him started. He did really well and almost fell asleep during the scan. Midway through the scan after getting some of the contrast liquid he vomited again. This time it wasn't as dark brown. After getting him cleaned up they finished up. What they found was the liquid going in his g tube was going straight to his small intestines and wasn't hitting his stomach at all. This is bizarre and we don't know yet what that means or what a plan is. On the way back we crashed into a door and I'm kinda over riding on a bed at this point. So it is currently 11:50pm and we got here at 6:20pm and we are still in the ER waiting for a room. They were having trouble figuring out whose team we should be on and what floor we needed to go to. While we have been waiting his tube which has been left open for a gravity vent/drain finally stopped putting out just yellow green and started releasing some of the brown stuff he has been throwing up and is now back to mostly yellow green. He also got a visit from vascular and they placed a new IV spot because they don't like the one in his scalp. One of the confusing things for the doctors is the fact that his vomit was a drastically different color from his drainage. The other concern is that he hasn't had a bowel movement all day and he hasn't had a wet diaper since his doctor appointment this morning even though he has been hooked up to fluids for the whole 6 ish hours we've been in the ER here. I am hoping we get moved to a room soon and that tomorrow we can get some answers to what's going on. Thank you all for the prayers and I want to say a special thank you to by sub Danell who is going to continue to cover my class even though I was supposed to return to work tomorrow, she's a rockstar! Kyler continues to let us know we don't get to make the plans, he is in control! What a whirlwind the past 10 days have been! First Kyler showed some weird color discharge when I was checking his residual. It was a weird brown color and didn't look like what I normally get out. So because one sign of reherniation is weird colored discharge we called the doctor and sent him a picture of it. He didn't seem too concerns but thought that Kyler's stomach was getting irritated from the acidity of his stomach and decided to increase his omeprazole (reflux medicine) to a higher dosage. Within 15 minutes of getting off the phone with the doctor, Kyler violently threw up 2 times. I called back by then it was after hours so they were going to transfer me to a nurse at Children's for the after hours line. I declined and called one of the numbers I had for his team there. They said that if it wasn't neon green or if he wasn't having trouble breathing that it was probably just a normal vomiting episode and told us to watch him. They did put in a call to the on call doctor here in Salina just in case and they called me after talking with CMH. They agreed with the plan to just up his medicine and watch him(he was calm and happy at this point) to see if he got worse. We still had some vomiting for a while but nothing too major and by the next morning his residual was looking normal again. A couple days later the nurse from ICD brought us a giant wedge to use for sleep. It has straps to it and is a pretty steep angle. We are trying it with Kyler to see if that helps him keep his vomiting down at night and to help with reflux. He doesn't seem to mind the straps and the wedge in general but it is harder for me to get him hooked up for feedings when he is in it!
Over the weekend Kyler got to experience his first K-State tailgate! We got to hang out in the RV so he was able to stay out of the sun and he had a pretty good time. He finally got to meet Papa Eric, James, and Tula! I am getting better about knowing what we need to have with us on longer trips away from the house and how to deal with all of his things! After the tailgate we stopped to visit grandma Jody on the way home. The next day we were all pretty tired so we slept in a bit and Kyler enjoyed some tummy time with Jaida. Mike and I got to get out and enjoy an evening out for a small concert in town. Grandpa Art was the brave soul to come take care of the little man and the big kids while we went to the concert. I trained him on how to do the feedings for Kyler and I also made a visual instruction book with step by step pictures and text to help whoever may end up watching him and needing to feed him! Then we had our meeting with ICD to go over his ISFP. He will be seen once a week by the nurse who will check him out and work on oral stimulation skills and the physical therapist. While we meet the physical therapist worked with Kyler and he did pretty good for her but got tired pretty quickly. He has gained some skills like bringing his hands to his mouth, doing a little better with holding his head up, he is starting to plant his feet and lift his hips a little, and he even grabbed for a toy one time! He is defiantly getting a lot more active as time goes on! We contacted the home health agency and set up a time for them to come out to meet us. She came out today and talked with us and was going to start the process of looking for 1-2 nurses to help with Kyler. We are possibly going to have 2 nurses so that one can do days and one can help at nights. This will be so helpful for us with me going back to work. It will allow Mike to be able to get some sleep during the day to work at night and it will allow me to get some sleep on nights when Mike is at work so that I can function during the day. We will still have some time to wait until it all gets started but the process has started at least! Kyler had an exciting day of firsts today. The morning started with the whole family taking Jaida to school to walk with her for two laps for her school marathon family day. Kyler got to join by riding in the kangaroo pouch I wore. He liked the fresh air and ended up falling asleep before we finished. After that the boys and I dropped dad off at home and we left to pick up Grandma Art to go visit Great Grandma Hargadine. Kyler wasn't too sure of her to start with but warmed up pretty quickly. While there a woman who works there came over to look at Kyler and while visiting with Grandpa Art, she mentioned that he looked familiar. I had no idea why she might recognize him and then she asked me if I knew Brandi Brady. She knows Brandi and Brandi is my cousin's wife(Liam's mommy) and this woman had seen pictures of Kyler from things that Brandi has shared! It was just so crazy to me that someone recognized him! After visiting with grandma we loaded back up to get back home. Kyler had his second first of the day this evening! He giggled and it was a beautiful sound! He was close to giggling the other day and was doing a silent giggle but tonight he actually made laughing sounds! I love when my babies hit those little milestones! I have been working to get the house ready for home health. We have Kyler's crib in our room along with his dresser and changing table. As I was trying to do a mental run down of what having an in home nurse would be like I realized that we would not want them coming into our room overtime he went to sleep, or needed a diaper changed, or a new outfit. So I began trying to figure out how to organize the living room with the things a nurse will need to take care of him during the day without needing to go into our room. Luckily we have pack in play that fits pretty nicely in the living room and I got some stacking drawers to hold extra clothes, burp clothes, and blankets. I also reorganized a cabinet we have to be able to hold the medical supplies we get shipped to us each month. As I am nearing the end of my maturity leave(only 3 school days left) I keep thinking about all of things I was hoping to get done before returning and am slowing coming to grips with the fact that it will be okay that I didn't get those things done. I have very mixed feelings about returning to work. On one hand I love my job and the students and people I work with and I'm looking forward to getting to see friends again but on the other hand I am not ready to leave my baby. I have gotten to be with him much longer than I did with my other two but it doesn't feel like I have had as much time as it sounds like on paper. I will at least get to ease back into work by starting on a Wednesday and then the following week I will have to be gone for a couple days due to Kyler's appointments in KC, two days of them! I am super thankful for my great sub and glad that she will get to cover for me when I leave for his appointments! There was some cool news about CDH just the other day. My cousin who lives up by KC sent me a news clip of a girl who is now 10 who was born with CDH. She was the first child with CDH at Children's Mercy to undergo the hernia repair while on ECMO. It was nice to see a little girl thriving ten years later, it gives us hope for Kyler. We are still so grateful for the prayers for Kyler. Mike said it much more eloquently than I can but CDH isn't something that just gets fixed by a surgery, it is a lifelong battle with many obstacles and our strong little warrior continues to need God, the doctor's wisdom, and our prayers every day so THANK YOU to everyone who sends him prayers and positive thoughts! Tomorrow marks 1 month since we got to bring Kyler home. Kyler is such a happy baby(unless he is throwing up or refluxing) and we are getting more and more smiles out of him. We are still working on trying to bottle feed but he hasn't taken any by bottle in the past week. It is pretty frustrating at times because we just want him to be able to eat orally and not need the G tube. I feel like he is losing his oral skills and having a harder time even when he is a little interested in the bottle, I am anxious to get started with the IFSP team to see what exercises and such they can teach us to do with him to help. In the past week we had a lot of stuff happen. We met with the eligibility person for the technology waiver and after she asked a bunch of questions requiring his health and needs and a few about our household we found out that Kyler does qualify for the TA waiver! The eligibility has two parts to it. The first is his medical needs like the G tube, reflux, medicines, impaired lung, etc. Based off those things he is awarded points that translate to hours per month of in home nursing care. The second part looks at what they call "risk factors", the lady that did our evaluation mentioned that she hates that is what they call them, they look at if the parents work outside of the home, are their other young children, and a few other things. These things are also given points that translate into hours. So now that we know he qualifies we had to fill out a 16 page application and fax that off to be processed. We now wait until we get assigned a care manager(we are really hoping to get Mike's friend from high school who pointed us in this direction!) to get the process moving along. The lady who did the eligibility will submit a recommended amount of hours and then the care manager will meet with us and they will decide how many hours he will get per month. We are able to start calling home health agencies to let them know we qualify and see if we can start setting up interviews to find someone to come into our home to care for Kyler. This is such a blessing to us. To know we will have someone knowledgeable about g tubes and who knows the signs of respiratory distress(since he only has 1 lung working) watching him while we are working is so comforting. It appears though that we may have a couple weeks of needing help watching him until the process is formally completed and his in home care can begin. I have set my work return date for September 20 and its likely the TA waiver and in home care won't start that quickly. It is going to be so much harder to leave Kyler to return to work than it was with the big kids. I have barely been away from him since day one and it is going to be a rough adjustment for me.
Kyler has had a bunch of testing done and last week we got the results of the genetic testing where they read his DNA like a book and looked for spelling errors. The call started off with the genetics counselor telling me they found something "interesting". Interesting is one of those words that I don't particularly like to hear when they are talking about my baby. While reading Kyler's DNA they found a gene mutation that is not present in either Mike or I's DNA, they took our blood to be able to cross reference all of Kyler's DNA with ours to look for the differences. Basically Kyler is a SPECC1L boy! His gene mutation is on the gene SPECC1L, the counselor called it "Spec 1L" but I think it looks like "special". This gene is linked wide set eyes and can cause some facial deformities. They feel like this gene could explain the difference forehead shape and skull plate issues that Kyler has(they were way more prominent when he was younger). They were not able to find anything else or the "cause" of the CDH. She said they found one page about one other patient with CDH who had the SPECC1L gene mutation but they just don't have enough information or data about CDH and what causes it yet. Hopefully Kyler's DNA will be able to help them figure it out in the future. The genetics counselor then warned me about Googling the gene mutation and wanted to give us a heads up about what we might find if/when we looked it up. This particular gene is linked to a syndrome called Opitz syndrome where some of the characteristics include wide set eyes, and other abnormalities usually along the midline of the body. She explained that one gene can cause many different things and at this time they don't feel like Kyler has most of the characteristics of that syndrome but it is something that in the future if he develops those characteristics he could possibly have that syndrome. We got the call on Thursday and I waited until tonight to look it up, mainly because I haven't had a lot of time and secondly it doesn't change anything for us if he has it or doesn't. After looking it up I feel like it is possible he does have that syndrome but like the counselor said he isn't showing all or most of the characteristics. From what I read Kyler does have the wide set eyes and he has undescended testes. Other characteristics that I found interesting that make me wonder about Kyler is the mentioning of some people with Opitz having a small or missing corpus callosum which is the nerve bundle that connects the two hemispheres of the brain, throat issues, and motor delays. The corpus callosum is curious to me because that is what one of the reports from the prenatal scans mentioned as them not being able to see and I can't remember now if we ever found out if it was there or not. I am going to be asking about that when we go back for our next appointment at the end of the month. The throat issues jump out to me because the article talked about it affecting swallowing, breathing, pneumonia, or life threatening breathing problems. These are all things that we have to worry about with Kyler and I am thinking we may need to do a swallow study or something to rule out any throat issues since we know that it's possible he has this syndrome. The motor delay issues is something else that Kyler has but it is hard to know if it is caused by this gene or the fact that he spent practically his first 3 months in the hospital and was paralyzed and unable to move like a normal baby for so long. The genetics counselor also warned me that when I looked up the syndrome it would mention intellectual disabilities or developmental delay as a possibility for people with this syndrome. I kinda chuckled and told her that those were the least of my worries and that as a special education teacher I could handle that if that ends up being the case for Kyler. It's not something I wish for him and I would feel some sadness for one more thing he would have to overcome but I'm pretty equipped to handle that side of things! Everything I've written so far tonight happened on Thursday and there is more still that happened Thursday...such a crazy day. It was time to get Kyler's medications filled. He is on three, two of which are more "specialty" medicines. After calling CMH and talking to multiple people, multiple times in the day we finally got connected with who would write the prescription for his medicine refills. I then called back and found out the had ordered them to their pharmacy at the hospital and I had to remind them that we live 3 hours away needed to be able to pick them up here. That took them a few more phone calls to other people before finally getting them sent to Dillons here in Salina. Later Thursday evening, pretty close to closing time, Dillons called to let us know they couldn't fill his prescription *insert giant sigh* . The first medication was out of stock through their manufacturer and the second is a compound medicine that they are unable to make in their pharmacy. Luckily they were able to transfer to the prescription to B&K who were able to get it made and filled by the end of the day on Friday. I never knew getting a prescription could be so difficult! Lastly on Thursday Gunner had his 4 year old check up and got some shots(he wasn't very happy about those!). Thursday was an exhausting day! The weekend was much better with Friday and Saturday being spent around the house and reorganizing and decluttering the big kids' rooms. Sunday Kyler had another first! He got to go to the lake for the first time! We normally spend the whole Labor Day weekend at the lake with my family but we didn't think Kyler could handle a full weekend so the kids and I took him out for one day while Mike was at work. It was fun for me, the lake is my happy place and I have missed it dearly this summer, and the big kids had a lot of fun as well. Kyler handled it really well. He didn't get in the water because I felt like it was too cool for him even though the hospital had given him the clear to get in lake water 2 weeks after discharge. He got to hang out in the camper with cousin Lee, Grandma Jody, and Aunt Robin while I was able to take Jaida and Gunner swimming and out on the boats for some tubing. We got to have dinner with a lot of the family and Kyler got to meet cousin Jessi and cousin Steve. Kyler and Lee got to play together and I can't wait until this time next year when they are running around together being the best of friends like I was with my cousins growing up. Today we all spent the day relaxing and hanging out at home. Jaida and Gunner were pretty tired from all of the swimming they did and slept until noon and then Gunner put himself down for a nap at 5(he usually fights naps!). Tonight I am working to figure out a better way to make Kyler's formula. Currently I make one batch per directions from the hospital and then I have to make a couple additional small batches to make enough to get us through 24 hours and I am trying to figure out how to make one large batch with enough for the 24 hours! This is a real life example of using math(for all my teacher friends who need another example)! This month we are looking at going back to KC for multiple appointments spread over 1-2 days. We will be learning how to change his G tube so that we can do it from home incase it comes out, he will have his check up at the NEON clinic, a hearing test(a special kind for babies who are at higher risk for hearing complications), and we will be meeting with a new doctor that is part of the genetics team. Kyler will continue to have appointments quite frequently and I am going to have to take off work for all of them. This is something I am not used to doing, I hate missing work and rarely take off but that is going to be different now. I am thankful that I have an amazing sub in my classroom and will be trying to steal her to come back anytime I have to be gone for Kyler's appointments! Please pray that the TA waiver process goes quickly and smoothly so that I can feel more at ease about returning to work and if you don't mind please say a prayer for me when I return that I handle it well. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
Hospital Visiting Hours and Rules
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May 2020
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