Last weekend we got to see cousin Lee again and as always it motivated Kyler to get moving a bit more! He followed Lee up a flight of stairs with no fussing and did some of the steps all by himself! The next day we took a trip to Rolling Hills Zoo with Lee and Britany. That day ended with therapy and Kyler did good cruising along the couch(he does best going to his right) and climbing stairs. We attempted to go down the stairs but he wasn't having it at that time! Tuesday evening we said bye to daddy as he headed out for his trip and we finished packing and getting ready to head to KC on Wednesday morning.
Wednesday morning came way too early after a restless nights sleep. The boys and I loaded into the van and headed out. We made a stop in Junction City and picked up my mom and then continued on the way. The boys slept most of the way there. Just outside of KC we stopped for gas and food and Kyler had another blowout(its becoming a habit). After getting him cleaned up, we set back out. Once we arrived at the hospital we had enough time to get Kyler redressed and we made our way up for his first appointment. Surgery pre admission testing. I made a mistake about where the appointment was and after getting redirected we got checked in. We got called back where they took his vitals(weight, height, oxygen, blood pressure, etc) and then asked questions about how he has been feeling and reviewed which surgery he was scheduled for. After reviewing his information they asked us to take him to get labs drawn to check his glucose, it was low the last surgery so they wanted to check it. They also had to check his lab because of the Diruil medicine he takes. We went over the fasting instructions and then went on our way. Originally we were scheduled in PAT at 1:00 and Special Care at 2:45 but on Tuesday we got a call asking us to go to special care as soon as we were done in PAT because one of the doctors had to leave early but wanted to see Kyler still. Then later we got another call asking if we could come to PAT earlier so we can get to Special Care sooner and I tell them we can. So now that our appointment in PAT is over we made our way to special care. When we checked in there, they didn't have down that we had been requested to come early so it was going to be a while. Then they called our team and we didn't end up having to wait too long to get seen. We got to skip the vitals since they were already done in PAT and we just got taken back to a room. Kyler was crawling around and playing and even walked behind a car toy that worked like a walker. First our coordinator came in and we started discussing Kyler's regimen and how he's been doing. I shared about his starting Nourish, eating better(and what a variety he was eating), puking decreased, and how he is active and making progress on his motor skills. We went over his oxygen use, which has been about every other night at 1/8th a liter. One night he is sating 95-100 all night and not needing any oxygen support and the next night he sats 95-91 and needs a little oxygen. He hasn't been needing it during the day since he has been healthy. The other team members trickle in when they can and the information gets relayed. I was waiting for the time when I get told that he needed another feeding added in each day because I had noticed that he hadn't really gained any weight from his last check in Salina. Much to my surprise, that wasn't exactly how that discussion went. The coordinator noted that he had leveled out on his weight but when the neonatologist looked at it, he commented on the chart not being as big of deal. He talked about how Kyler looked and how he was active. He also said that Kyler has always been in that range and it is probably just where he will be. I was sitting there thinking "FINALLY!! I've only been saying that for 14 months!". They did look at his growth per day and did come calculations and would like us to adjust his feedings to give him 2 more ounces per day and some more water daily. I don't think that is unreasonable and think we can work up to adding those extra ounces in over time so that he doesn't start puking more again. We discussed his oxygen again and decided to redo the oxygen study now that he is healthy and if that looked good we can stop oxygen at night unless he is sick. We know from his recent illness that he needs more support when he is sick and we are getting ready to hit fall and winter months which means sickness is going to become more prevalent. We discussed the swallow study and the neonatologist asked if it was necessary. He felt like it was a lot of radiation to expose Kyler to if it wasn't needed. We have been waiting to get one for most of his life to make sure he was safe to be eating and drinking but based on what he's been eating and drinking at home and the fact that he hasn't developed pneumonia or respiratory distress, they felt like he wasn't aspirating. We decided to cancel the OPM(swallow study) and if we felt like he was having issues, we could have their OT team look at him to see if it was needed at that point. We discussed his medications and decided to discontinue his two prescriptions. He no longer has to take Duiril and Nexium! If he starts having a harder time breathing then we will have to start back up on the Duiril. We talked about the upcoming surgery and what the plan was. Next we talked about next appointments. I was surprised to hear that the special care team didn't need to see him again until APRIL! No more every other month appointments! That is until pulmonology mentioned that they will want to see him around 6 months to check on his oxygen status and surgery will also need to see him back to check up on his testicles after the surgery. We also have to head back in September for feeding clinic and will now plan to see surgery then. We will return in January to check in with pulmonology and surgery again at that time. It is exciting that we are turning a corner and don't have to be seen so often now! Before we were completely done I asked them to check Kyler's skull, he has a protruding ridge where it feels like his skull plates have collided and "mountained" up. After feeling it, we discussed if it was an issue. They felt like it was mostly cosmetic but mentioned possibly a helmet to shape it and having the plastic surgeon look at it to see if it is an issue. They felt like it was mainly just cosmetic and one of the team members thought it was too late for a helmet. They aren't concerned about his head shape but it may be something that gets looked at later on. If its just cosmetic, its not an issue but I want to make sure that it isn't something that will cause issues later on. We also discussed the feeding therapy we have been doing in Manhattan and after sharing with them that I am the one doing the actual feeding, selecting and bringing the variety of foods, and the scheduling issue, they felt like it wasn't worth our time since I could do everything but the stimulation machine at home. So when Mike gets back, we will discuss not continuing those sessions once I have to return to work. Finally our appointments were over and it was time to go get his labs drawn and head to the hotel to check in. After getting checked in, we went to find an early dinner since we had a later breakfast and skipped lunch altogether. After dinner we got on our suits and went swimming. The pool was fairly cold but Gunner really enjoyed himself! We got cleaned up for the night and I got our day bags packed for surgery day. I had to have Kyler at the Same Day Surgery at 7:30am after stoping all food at 2:00 am and only clear liquids until 5:30am. I didn't sleep great up was up around 6 and was able to grab some breakfast at the hotel while the boys stayed asleep with my mom in the room. Then I got Kyler and headed to the hospital. Gunner got to stay and sleep in and then was going to get to do some fun things with grandma while the surgery was going on. Kyler and I got checked in at Same Day Surgery and after a short wait, we were taken back to a room. Once in there they reviewed the procedure, Kyler got undressed and in a gown, and the nurse looked at the surgery schedule. There was a mix up and we were told the wrong time to come in. Kyler wasn't on the schedule to go back to the OR until 9:45(two hours later from when she looked). She thought that was a mistake so she went to check. It wasn't wrong, we had been given the wrong arrival time. They went ahead and had us talk to the surgeon(Dr. Snyder) and an anesthesiologist to get that part out of the way so when they were ready, he could go back without any other delays. After that was done they offered to let him go back out to the waiting room to play(more toys available out there) instead of waiting in the small room we were in. I though that would be better suited to keeping Kyler bust and to help him not focus on being hungry so we headed out there. Kyler played with all of the toys out there and was pretty happy while we waited. I was very glad I got up early to eat before coming to hospital because I would not have had time to grab anything with the delays. It was just under 2 hours when they called him back again. We returned to the room and I handed Kyler to her. To my surprise he didn't cry or fuss at all(he's been pretty clingy to me lately). I was then escorted to the elevators that would take me to surgery waiting room(a different one that is one floor down and allows food and drink). I didn't really need the escort, I know my way around pretty well but they have people specifically for that type of thing. It was going to be around 2-2.5 hours from that time until I would get to see him. That time was for about 75 minutes in the operating room and then another 45 minutes to an hour in recovery. After that they would take me to meet him at "Reunion Ave" and then to an observation room for 2-6 hours depending on how he was doing. I got to the waiting room and found a table to set up at. I used that time to do some internet browsing and worked on making some stuff for work. At about 10:30 the surgeon came out to let me know how it went. He started off with telling me that Kyler did good for the surgery but his anatomy was "weird". It was a little concerning to hear that coming from a surgeon who has seen thousands of patients. So they had planned to do a Laparoscopic One-Stage Fowler-Stephens Orchiopexy which would bring release the testis and then move them down to the scrotum. They were not able to complete the procedure and ended up only being able to do the one part. Kyler's testis are abnormal as we know from his last orchipexy. The complication they ran into this time was that his Vas Deferens(the duct that carries sperm) went down to his scrotum but there was no testicle in the scrotum. So they had to pull out the instruments and make another incision to look for the testicle(which they had seen the last time). Eventually they found it again. It was very high and wrapped up around his kidneys. The "weird" thing was that they couldn't see how but the Vas Deferens was up and connected to the testicle. With all of that, they were only able to do part of procedure and they ended up freeing up the testicle but leaving it in his abdominal cavity. Dr. Snyder asked if we had had any genetic testing done and I shared about his SPECC1L gene mutation but he clarified and was asking about male/female genes. I told him I hadn't been told there were any issues with that part of his genes. He shared that shape of his testicles was something that sometimes they see in kids with gene issues. He also said that he thinks it would be in our best interest to have the testicle biopsied when the next step of the procedure is to be completed in about 6 months. So I am left not really knowing with 100% certainty what all of that means. I am thinking that the biopsy is to check to make sure what they think are his testicles are actually testicle tissue and that they actually formed during development or if they(or one) didn't finish developing and its just a tissue mass that doesn't do anything. They said his right side(that was done in February) looks good and is still down in his scrotum so that is promising. After I was done talking with the surgeon, I had to go back and wait for another 45 minutes or so before they called me back to go meet up with Kyler. When they brought him out, he was calm and content in the rolling crib bed. The nurses shared that he did really well and in the recovery room his oxygen was at 95 on room air. That is really good for him coming out of anesthesia. They had oxygen on him at the moment because they wanted to give him a buffer and not exhaust him. We got escorted up to 3 West room 11 which was the surgery observation room. When we got up there he started fussing and I got to hold him. While I was holding him, they checked his vitals and he fell back asleep. After about 30 minutes we decided to feed him and make sure that he was tolerating that. We opted to be safe and set the dose to run over an hour instead of 20 minutes. We gave him some Tylenol and I was given a prescription for oxycodon. I decided to hold of on the oxy and see how he did with pain first. About halfway through his feeding we took the oxygen off him and watched his numbers again as he went back to sleep. His numbers were fine and his feeding finished without vomiting. The nurse came in and thought that he could leave in about 30 minutes! I laid him back in the crib and started getting our things organized in the stroller and pulled out an outfit to dress him in. He was calm laying there and almost went back to sleep. It was time to leave and I started getting him dressed and I changed my mind about the oxycodon. I knew we would be going out for dinner and not sure what else and I didn't want him to be uncomfortable so the nurse gave him a dose and I made a plan to stop at the pharmacy on the main floor of the hospital before leaving. After getting our bracelets cut off we made our way back to the main entrance and the pharmacy. I gave them the prescription but was told it would be around 30 minutes to fill it. I was impatient and just wanted to get back to the hotel where Gunner and Grandma were waiting so I decided to not fill the script and figured I could hit a Walmart for some ibuprofen to alternate if needed. Back at the hotel Kyler started playing with toys while Gunner told me about the adventures he had with grandma. He got to explore at Science City and see the Dinosaur exhibit(which scared him). He built a little car at Science City and got to get in a helicopter! We spent a little time just relaxing and updating people on how it went and then we decided on an early dinner. I hadn't eaten since 6am(minus some beef jerky and chips ahoy cookies) and I was hungry! We made our way to Overland Park and found The Cheesecake Factory. Kyler was interested in eating and was have small bites of some of our food and kept signing for more even before his mouth was empty! After that we went across the street to a Walmart to get some long pants for Kyler and some medicine. It was getting cool and I had forgotten to pack long pants for him. I decided that I might as well try to get his prescription filled since we were there and had some stuff to look at. I dropped it off and was told it would be 20 minutes. So we went about looking for baby pants. Their selection was terrible but we found a two pack that would work. We also found him a couple music toys that he could play with back at the hotel while I took Gunner swimming. Kyler loves music and has the cutest little dances that he does! I went back to pick up the prescription and they had a problem with insurance and needed 15 more minutes(I was kicking myself for not just getting it at the hospital now). So we wandered around the store some more. Went back and after waiting in line behind 3 people, it still wasn't ready. This time I was told that if I wanted to sit there and wait they would call me us as soon as it was done(there was now a line of about 6 people behind me). So I sat and waited. About 10 minutes later I was finally able to get it we were able to leave. One our way out my mom had the idea to check the glasses store inside Walmart for infant/kid glasses strap for Kyler's new glasses. We had got them shortened to fit his head better but in doing so we lost the holes for the straps to attach to. Without a strap the glasses would only last on his face for about 30 seconds before he yanked them off. With luck we found a couple different types and I got them to try out. Luckily they worked and now we can keep his glasses on(unless he is being particularly feisty). The next morning we got up and had breakfast and then packed the van back up so we could check out of the hotel. Before heading home, we made our way to crown center. After exploring through the shops, we moved over to Sea Life. Gunner got to do a mission pack that had him looking for certain things as we went through. It was fun and Kyler enjoyed seeing the ocean life they had in there. After that we started making our way home. It didn't take long for both boys to fall asleep. As we got close to Manhattan, we decided to take a detour to Pillsbury Crossing. My mom and the boys had never been. When we got there we could see it was pretty dried up so I didn't get to show them how cool it is when water is flowing over the rock but we took some time to explore the dry river rock bed. We ended up seeing a bunch of frogs from large to teeny tiny. Lastly we walked over to where there was water and I saw a snake just hanging out feet from where people were swimming. The snake had a small black fish in its mouth that was only a couple of inches long. After a google search and sending the photo to someone who is out in nature more than us, we identified the snake as a Northern Water Snake. We left and continued home after dropping mom off at her house. Kyler is doing well and hasn't needed any pain meds since yesterday around noon and we are awaiting Jaida and Mike's arrivals back home in the next couple of days. Next up for us is me getting back into my classroom to get ready for my official first day back and just getting the kids ready for back to school again! We will be waiting for September when we go back for feeding clinic and surgery check up. Thanks for all the prayers for Kyler's surgery!
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Time flies when you're having fun! We have been staying plenty busy without really doing a whole lot! Kyler ended up fighting a rhinovirus that was diagnosed after a trip to the ER on June 17th after his fever reached somewhere between 104-105 from what our thermometer was reading. That cold and fever ran from the 13th until the 20th with just some lower grade for a few days after that. It was not fun. He felt terrible and ended up needing some oxygen support, even during the daytime while he was fighting that virus. Unfortunately that illness cause our scheduled oxygen study to be off and it also postponed his surgery. The oxygen study was to be done without oxygen on and for a full 24 hours. I mixed up directions and only put it on him while he was sleeping, and then ended up putting oxygen on him because of his numbers with his illness. So we will have to have that redone to see if when he is healthy, does he need oxygen during sleep hours still. The surgery got rescheduled because it is considered elective and they will not do elective surgeries if they have been sick. He needs to be healthy for 4-6 weeks before they will operate. So it was moved from June 28 to July 26. This was a little bit of a bummer because we had be considering taking a trip around the 25th of July but it's what had to happen. The next couple of days as Kyler continued to get over his cold, he learned how to do the "pat it, roll it, and toss it in the air" part of the Patty Cake song. It is super cute and so fun to watch him do! He also went in for a vision check up and we found out his prescription got a little better. I also had to admit that we haven't had him wearing them as often because he yanks them right off and I get tired of fighting him to keep them on. I did commit to getting him to wear them more now that he is older and seeming to understand "no" and simple commands more. Another motivator to have him wear them is that if he doesn't now, he may have to do some eye patching or even surgery in the future. So I started the battle of having him wear them more by making him a new outfit that says "Chicks dig the glasses" and he is amazingly adorable in it! We also had his new frames and lenses ordered since the prescription changed and his current pair of glasses are from when he first got them at 3 months! All this time we had still be awaiting to get approval and get Kyler's Nourish(the blended food). Finally around the 27th of June(after calling weekly) we got a call saying the company received the approval from insurance(United Healthcare) and we should receive it in a day or two. Hooray!! I was so excited. At the time I had wished it would have come sooner so that our nurse could help work out the kinks but she was leaving for almost two weeks for her wedding. It worked out and I was able to have a plan worked out for when she returned! We started it that Friday after stoping the formula after his 9:00pm feed Thursday. Our instructions from the feeding clinic in KC said to start with 2oz per feeding and daily increase by 1oz as he tolerated it. So Friday he received 2oz at 9am, 1pm, 5pm, 9pm, and 1am. I used a syringe to slow push it in and he tolerated it with no vomiting all day!!! I may have accidentally squirted some onto the ceiling the first time! The next day we moved up to 3 oz at the same times and Kyler did well again. He even showed some crankiness and ate some orally for us! I think it was one of the first times he really felt hungry and that made me excited! Day 3 of the Nourish he got 4oz at a time but this time he didn't get it at the 1am feeding. We were told he needs a total of 20oz per day and we could do that by giving him 4 ounces 5 times a day OR we could give him 5 ounces 4 times a day. We considered how he was already getting almost 5oz of formula before the switch and knew he could mostly handle that much and I wanted to get him off overnight feedings if possible, so we decided to go for the 4 feedings per day schedule. Day 4 he moved up to the full 5 ounces and did pretty well. I accidentally made him puke by pushing it too quickly. It is pretty hard to time pushing in food over 10-15 minutes by hand. The next day I decided that using the pump would be better for us and over the next couple of days figured out that he needed around 22 minutes per feeding to not puke. Since starting the Nourish he hasn't puked as much. He will occasionally still but it has cut down quite a bit already. He is also needing 7 ounces of water per day that is spread out between feedings. I found the easiest way to do this is to fill a container with his daily water and fill a syringe with a couple ounces at a time and give it to him that way. This also allows me to get his water in if we miss a time to give it to him(can't do it too closely to eating so he has room for the food) and I can give him some in the middle of the night if needed. Since he started feeling some hunger he has been way more interested in eating. On the 4th day of the Nourish, he ate an entire baby food container of food in around 10 minutes! That is 4oz of food!! It is so exciting. His oral intake fluctuates quite a bit still but there are times when he is eating enough orally that I have to watch how much Nourish goes in through he g-tube so we don't overstuff him and make him puke it all up. Since it has been happening quite a bit, I started him a MyFitnessPal account where we can log his foods and watch his calories and have a better idea of how much nourish he needs. He has gotten so much better at the oral feeding since starting Nourish and getting stronger with his gross motor skills. He is doing a lot better at moving food around his mouth with his tongue, he isn't vomiting every time he gags, and he is trying a lot of different textures. He has had cheese ravioli, pizza, burrito, spaghetti, beef ravioli, McDonalds cheeseburger, ice cream, marble cheese, breads, and a few other things along with his purees. He is also drinking from a cup! I was beyond excited when he was showing interest and after some spills he was actually taking drinks. I could hear some solid gulps and he wasn't coughing on it or showing any other signs of not handling the water well! Since then he has also had some small drinks of plain and chocolate milk, apple juice, and more ice water(which is his favorite at this time)! July started off with a visit from Uncle Sean and cousin Megan and a trip to Kenwood Cove with the rest of the cousins. He also choose this time to learn how to unhook his feeding tube and drench his bed and himself in food. Okay it was an accident but I think he liked getting a bath after the whole ordeal! Next up he hit another milestone! He pulled himself to standing without help! I had to trick him by putting my hand on his to make him think I was helping but he did it! Next up we got to see cousin Lee and Britney. Kyler got some tough love from Lee in the form of a hug. It was pretty funny as it happened. Lee tried to give Kyler a hug and Kyler started crying. This caused Lee to laugh and then he tried again, only this time he yanked Kyler to him and gave him some love even if Kyler didn't want it! We celebrated the 4th with friends. Kyler did really well with the noises and enjoyed watching the big ones in the sky! After the 4th we finished out Jaida and Gunner's final ball games. We also experienced a new kind of diaper out of Kyler. Since he started the Nourish, his bowel movements have been larger and messier. This resulted in a massive mess when he quietly filled...overfilled... his diaper and proceeded to play in the kitchen. To clean that mess, I had to bring out the carpet cleaner, Clorox, and the laundry stain remover! This has been a trend now. So much so that when he starts his tell tell sign of going, I try to get him to the toilet. It works some of the time and he has gone to the bathroom a few times sitting on the stool! When I miss the opportunity, its a gamble of what kind of mess I will find! As the weekend hit, we headed out to the lake. It was fun getting to swim and enjoy being with family and the firework show was awesome. We took a ride on my Uncle Billy's sailboat and watched them from on the lake. Jaida and I spent some time swimming around the boat while we waited for the show to start. I forgot how much swimming works your muscles and woke up sore the next day! We got to return to the lake the next weekend also to celebrate cousin Kamil and cousin Lee's birthdays. In the middle of all of our running arounds we have been having his regular physical therapy and his therapies in Manhattan. In physical therapy he has been working on crawling over objects and in through things. He wasn't too sure of the tunnel but is getting more comfortable with it. He also is crawling over pillows and working on getting over and through obstacles. He has also been working on standing and cruising along furniture. Most of the time it is guided with us helping move his legs. He has just started moving them himself and walking behind a walker in the last week or so! Another milestone hit! I am always amazed at his progress and even when it seems slow, he gets there on his time. He really doesn't like being told what to do :) Our therapies in Manhattan have only really truly just started. After his initial eval we were set to return but since he was running fevers we had to cancel that weeks appointment. So we went down the next week and I was looking forward to getting a session in. When we got there, it turned out that we needed to do a speech eval and we didn't get to work on feeding. The speech evaluation consisted of her asking me if he could do a particular skill. I had a hard time answering a lot of them because they were things that I think I've heard him do but he doesn't do often. Due to that and the test only have two choices(yes or no), he received a score of "poor" for his expressive language(what he can show us and say) and he was in the average range of the receptive language(what he understands). I was pretty surprised his expressive was that low, I knew he was a little behind but I didn't really think he was that far behind. After that was over, we were sent on our way and headed home. The next week we headed that way ready to some real work finally. We got to the kitchen and I was the one to feed him. I had an arsenal of food choices to see what we could get him to try. Food options included a puree, marble cheese, cereal puffs, a McDonald's cheeseburger, and cup of water. I was really hopeful because just the day or two before his appointment was when I heard him taking good swallows of water! The speech person hooked him up to a electronic machine that sends pulses through the pads. This was placed on his throat and turned on. It is supposed to help make his body want to swallow. Kyler didn't flinch and she had it turned up all the way. It was a great session and Kyler ended up eating a lot of cheese and puffs, some puree, and about a quarter of the cheeseburger! The only thing he wouldn't do was drink anything. It was very exciting and he got in a lot of swallows. Since he was eating so well, the speech lady ended up trying to work some language in and had him practicing pointing to which food he wanted. Kyler just wanted to grab it and needed help curling his fingers and extending his pointer. As we were finishing she told us we needed to head to the Occupational Therapist next, the week before she had sent us home when we were supposed to go see the OT. So we headed there next. The person we were supposed to see was in a meeting so we met with another lady and she had to do an OT eval on him. That one was pretty close to average for his age but there were a few things he was a little behind on and most of those things are from lack of exposure. So we finally headed home and I had a list of things to work on that he wasn't able to do for the assessment. What was kinda funny was that he started doing a few of the things by the time we had left! So this week we(his nurse and Kyler and I) headed back to Manhattan for more sessions. Feeding was okay. He wasn't super interested in eating but he did take some drinks of water. So we decided to pack up the food and head to her office to work on some language stuff. Before we left the kitchen, I asked to feel the patch thing they put on him(I really need to find out what its called) just out of curiosity. She said sure and said most parents want to feel it first before putting it on the kid, I told her I trusted they wouldn't do something that would hurt him! So she put a patch on me and began turning it up. She had told us that she could only handle 4-5 level and Kyler was at 10! I wasn't feeling anything and began thinking Kyler and I must have really high pain tolerance. Well maybe or maybe not. It wasn't working. After telling her I didn't feel anything as she continued to turn up the levels, she did a test and found it wasn't working. So I don't know if it was working the previous week or not! In her office, she had Kyler playing with some toys and he was doing quite a bit of babbling. After our time was up there we headed down to OT. She wasn't ready for us and we were taken to the waiting room to wait. After about five minutes we were taken back to the OT's room. It was then that I was a little taken aback. She didn't have anything planned to work on and began asking if we wanted to have the OT sessions or not. I was confused because at the very first meeting, it seemed like they wanted him to get as many services through them as he could(we turned down the PT since we already have a great one at home) but were open to the other since they could see him weekly. After saying we would go ahead and continue(or start?) with OT we spent the rest of the time watching Kyler play. He started crawling around trying to get into different cubbies with toys and she just let him get into what he wanted. I was annoyed at this point and started directing him with markers to scribble. When we left I was feeling pretty disappointed in that OT session. I was really frustrated that we spent a half and hour in there and the OT didn't do anything to directly work with Kyler. On the way out of the office I checked in at the receptionist to check in on the schedule. The previous week I had asked about getting him on a Mon/Tue one week and a Wed/Thur the next week type of schedule for when school starts so that Mike could bring him to sessions. I can't take off every other week to go to the sessions. I just an instant "no" and that they can't do that. I personally feel like thats a bit ridiculous that they can't adjust schedules at all. I was told the only way to do that is to call a week ahead of time and see if there was a cancellation. I was very frustrated at the scheduling issue. I went ahead and canceled the next weeks appointment due to Kyler's surgery that's coming up. As I drove home, I began wondering if driving to Manhattan is worth it if they aren't going to be able to work with us to see him weekly once school starts. I don't feel like any of the progress Kyler has made in his eating and speech is because of what they are doing and its more from what we do everyday at home. For the feeding, I am the one feeding him, selecting and bringing foods to try, and noticing his signals. The only thing they have done that I can't is the patch machine. So I am going to be talking to our team of people to see if I need to continue those services or not(we are still getting feeding support with the speech therapist through Infant and Child Development so we are just quitting services if we decide to go that route). Today we got to partake in the 3rd annual Runner's for Gunar's Sake. It is an event to support our friends son Gunar. Gunar's family has been super supportive of us with Kyler's journey and we were so excited to get to be part of the festivities today. There was a walk/run and we did the walking part! Mike toughed out the full walk while I pulled Kyler and Gunner in our wagon for about two miles! I did get Gunner to help walk and pull the wagon for a short while! It was a fun day and we came home with some homemade medals made by Gunar himself! Now we are just waiting to get through the next few days. Mike will be heading out Tuesday evening to go to Mexico on a trip with friends and Jaida is on a trip with a friend so Wednesday the boys and I will head towards KC, picking up my mom along the way, to Kyler's appointments and then surgery on Thursday. While we are in KC, we are planning to take Gunner to do something fun but haven't made any solid plans until we see how Kyler handles surgery. This surgery is to bring down his left testicle. From what I can see from online searches is that it should only take around an hour for the actual surgery time and I know it is an out patient surgery so we aren't planning on a hospital stay this time! Please say a quick prayer for him that his surgery goes quick and uneventful!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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