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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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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