January was a little bit of a hectic month for us! We heard back from the ENT and they were not able to coordinate Kyler's tubes with his surgery at Children's Mercy without pushing back his orchiopexy surgery a few months. This was because CMH would have needed to see and evaluate Kyler for hearing and wouldn't be able to just take the records from another place. We didn't want to wait that long so we decided to move forward the scheduled surgery and get the tubes scheduled separately through the Hutch ENT Clinic. Kyler was scheduled for February 5th to have tubes placed. The plans got changed. We had plans to go to KC on the 23rd for Special Care team and Pre-Op appointment with surgery following on the 24th when I got a call from the hospital verifying some information. During that phone call I was told of his upcoming appointments and they were not what I had down. I was told Special Care team was on the 23rd but surgery was scheduled for the 31st. I informed the lady calling that those dates were incorrect and we would be coming on the 23rd and 24th so that the days were back to back due to us traveling to them. She was unsure what was going on but transferred me to the Surgery Clinic to get it straightened out. In the meantime I was panicking slightly because I had already arranged for a sub for the 23rd -24th and wasn't sure if I was going to have to take off any more days now(I am running out of sick leave very quickly). After connecting with Surgery Clinic, I explained to them that those dates were not what we were told and had planned on. I think they were surprised to hear from me that quickly because they had just changed the surgery date in their system. What I learned was the Surgeon was going out of town on the 23rd/24th and the had to move Kyler's surgery to the 31st. They hadn't called up to let us know because they were still in the process of trying to coordinate with Special Care so that we could seem them the day before the new surgery date instead of the 23rd. So after finding out that his surgery was pushed back and now less than a full week from when he was scheduled to get tubes, I had to call the ENT office and talk with them. After discussing the new dates with them, they wanted to push his tubes back another week as well so his new tubes date is February 12th. Now it was just the waiting game. In the meantime we had our reassessment with the TA Waiver and Kyler continued to qualify(this is was provides his home health nursing) but I think he will lose that coverage in the next month or so since he was doing well with orally eating before getting sick in December. We are weary of how he will do with two upcoming surgeries that aren't too far apart. We also still haven't gotten doctor approval with his oral feeds. So we will be reevaluating this in the next month or two. I am pretty anxious about losing this coverage and our home nursing. His G-Tube is what mainly qualifies him but its his lungs that make the home health nursing so needed for him. When he loses coverage, we will have to decide if we can put him in daycare where he will be exposed to all sorts of illness from other kids that could put his lungs at risk or figure out a way to keep him home. With Mike working nights, we could maybe make it work but it would mean Mike would be unable to get anywhere close to enough sleep each day. One other option we are going to have to look into is possibly paying out of pocket for home nursing. Another downside to losing his coverage is losing Kyler's amazing nurse Kalisha. He loves her and she just feels like another family member to us. Jaida and Gunner both started basketball. Jaida is playing on a team that has games every Saturday and Gunner is doing a parent and me type of camp to learn basic skills. Kyler has been enjoying getting to explore the court area during Jaida's practices. With Kyler still not walking independently, Shayla brought back the walker for him to use. It really seemed like he lost all confidence he had in himself and walking after that hip inflammation. Luckily he started to get some of his confidence back. After a visit to Great Grandpa(Kyler's favorite walking buddy), Kyler was walking all over Grandpa's house holding his finger but doing most of the work himself! The next evening at Jaida's practice, we took the walker and Gunner got to to chase him all over the court. He was wheelin' and dealin' all over the spare court and boy was he pretty proud of himself! There were times it was like he was moving faster than I think I had ever seen him go! He also got quite a few comments how adorable he is(how can you not love a little dude in glasses and a fancy walker!) and he was loving checking out anywhere he could get to. All of that must have been just what he needed and after getting home and beginning to get ready for bed, he decided he was ready to walk again! He started by leaning on the couch and then walked to me! I cannot describe how happy I was that he was walking again, it had been 47 days since his him issue. The next week brought two days of complete madness at work before heading to KC for surgery. I don't get overwhelmed very often but I was feeling so overwhelmed that I could feel tears just pushing to flow. I had my sub lined up and she is amazing but I am not someone who likes to be gone from work and being gone for a single day stresses me out, let alone two days in a row. Then to add to my stress, CMH called to confirm details and review pre-surgery instructions and I was told they were planning on him staying inpatient overnight after the surgery. WHAT!? We hadn't been told that in any of the other conversations and now I needed to make plans to be gone for 3 days(home and work). I ended up getting things all together(after an evening stop to my classroom after Gunner's ball practice) and felt better. I cannot even begin to tell you how thankful I am for the amazing paraprofessionals I have in my classroom, I know that they can keep the classroom running in my absence and are pros about being flexible! Back at home I still had to pack for Kyler and I. Unfortunately I was so mentally exhausted from the high level of stress I was feeling, I just needed to crash. I threw together a handful of the easy to pack things in addition to the stuff Kyler's nurse put together then I set my alarm early and was out! After a quick packing spree in the morning, we dropped the big kids off at their schools and hit the road. We got to hospital and had a little bit of time to kill before his first appointment so we took a ride up to the 3rd floor to see our friends in the Fetal Health Center. They were all in a meeting when we got there so we told the receptionist that we would try again later. We took Kyler to the hospital library to play, this was one of Jaida and Gunner's favorite places to go when Kyler was still in the NICU and now Kyler is big enough to enjoy it! After a little while in there and Kyler making some new friends, we went to the cafeteria to feed him. Appointment time. We headed to the 2nd floor for Special Care and got checked in. We didn't have a very long wait and were taken back to get vitals. Kyler was less than thrilled to have the oxygen sensor wrapped around his toe and it took a bit to get a reading but it was reading 98%. He was weighed and measured, then we were taken to an exam room. A nurse we were unfamiliar with came in and shared that our normal coordinator was not there that day and she started doing updates for medicines, issues, etc. Eventually Dr. Khmour(neonatologist) came in and explained that surgery nurse practitioner was caught in surgery clinic and couldn't get away, and the pulmonologist wasn't there either. So our normal team was now down to one. We reviewed with him what has been going on with Kyler lately and Kyler was busy moving all over the room playing with as much as he could. He even went over to the doctor and raised his arms up so the doctor would pick him up and hold him. Turns out he wanted to mess with the computer he was typing on but he didn't get to do that! There wasn't much we needed to talk about, Kyler is maintaining well off oxygen and we shared how he has been eating orally(as long as he isn't sick) and is finally drinking some milk instead of just water. Dr. Khmour brought up his weight. This is becoming more and more of a sensitive subject for me. Kyler is small, always has been and I don't see that changing. Khmour mentioned adding in one tube feeding per day to help him gain weight because as of the 23rd, Kyler's weight has plateaued a bit. This is where I get really frustrated. We had already discussed how we did put him back on a tube feedings some when he got sick in December with that bug for a week and during that time he lost close to a pound. He had started to gain it back and then he started teething(remember how hard this always hits him) which was making him eat less than normal. After going back and forth a bit(I'm sure I sound as much like a broken record and I think they do) we told him that we wanted to give Kyler another month or so and see how he does after his surgeries and such and then we would look at supplementing with a tube feeding. We are going to try adding in more calories to his oral foods to beef up those calorie counts and we will reassess in a month or so. After that appointment, we headed to the PAT appointment for pre-op assessment. In there they retook some vitals and checked him over. They noticed his nose was draining pretty steadily and asked about it. It had all been clear and I shared that he was teething. His oxygen was at 100%, his lungs sounded clear, and he appeared healthy except for the drainage but they had to call for an anesthesia doctor to lay eyes on him to clear him for surgery in the morning. After talking with us and seeing Kyler, he felt that it was safe for Kyler to proceed with the surgery. Now that his appointments were finished, we headed back to the 3rd floor to see if they were ready for a visitor. Up on the 3rd floor, it was pretty empty. We could hear voices but couldn't see anyone so we decided to wait just a couple minutes before leaving. Right before we were going to leave we saw the social worker who was assigned to us. She quickly said hello, shared that they were all in a meeting(possibly the same one from earlier) but they would be finishing up shortly. She then hurried off to grab something before returning. Kyler was enjoying himself in the toy area so we waited. Just a short time later the doors opened and many familiar faces came out. They were very excited to see Kyler and Kyler had no trouble showing off for them! Alisha and Dana are two of our favorites up there and we got to see them both! They both shared that they had just been in a tough meeting and seeing Kyler was perfect timing! Then out came Dr. Bennett(my favorite of the OBGYNS we had up there) and Kyler walked right over to him and wanted to be held! Then when Kyler got back down he started walking with Dr. Bennett down the hall and then walked to another doctor coming towards him. Kyler is a pretty social kid and just makes people around him smile. Kyler noticed the nurses and staff going in a room and coming out with food and ended up getting a surprise slice of pizza from his buddy Dana! He devoured that slice right to the crust and loved every bite of it! It was time to say good byes and we headed out of the hospital! We got checked in at the Ronald McDonald House(Cherry Street that has been renamed Bernstein House) and I laid down with Kyler for a short nap before heading out to meet my friend for dinner. Turns out that nap didn't help me and I woke up feeling dizzy like I was experiencing a vertigo episode all of a sudden. I continued to feel dizzy and nauseous through the drive to dinner, while sitting at the table, and even worse on the way back. I felt terrible about being a lousy dinner participant(I had to prop my head up with my hand to feel steady enough) and physically not good. The dizziness won as soon as I stepped out of the car back at the house. I proceeded to climb in bed and not move until the next morning. Surgery Day. We got up early and headed over to the hospital to get checked in. I was feeling better but not yet 100%. We got checked in with security and made our way to same day surgery where the waiting room was pretty full. After a short wait we were called back to a room. Once back there, they checked his vitals which looked good and we waited to talk with Dr. Snyder and the anesthesiologist. Dr. Snyder came in and reviewed what surgery we were doing and I asked about doing the biopsy. He said they would see if there was enough tissue available to do. After the anesthesiologist came in, we had just a short while more to wait until they took Kyler back. At 8:30 a nurse who would be with Kyler throughout the surgery and Kyler went right to her. Mike and I were then sent to the surgery waiting area where we were given a buzzer. The buzzer would light up and buzz when they had news about Kyler. Mike went to get us up some food from the cafeteria while I waited in the room(one person has to stay in the waiting room at all times). At 9:30 they called our buzzer number(they didn't activate it). They let us know that he was out of surgery and Dr. Snyder would be down to talk with us soon. We met with Dr. Snyder in a little room and he told us the surgery went well and Kyler did well. They were able to successfully complete the orchiopexy. The testicle was still streaky in shape and once in there, they discovered that there is a thin transparent layer of tissue holding the vas deferens to the testicle. He said there may be microscopic tunnels running through the tissue but we will not know until Kyler is older.We went back to the waiting area to wait until Kyler woke up from the anesthesia. A short time later, we were asked to take a call in the private room. It was the nurse who was with him in recovery. He said that Kyler was starting to wake up and he asked about him staying the night in a room. We shared that we were not sure but it had been mentioned but the nurse said he thought Kyler would be fine going home. He was on room air(not needing any oxygen) and was doing fine. So we thought that was fine. We went back to the waiting area for a while to give Kyler a little more time to wake up. Around 10:30 they called us up again, this time to tell us to head to Reunion Ave upstairs to meet Kyler. Once we got up there he wasn't in the hallway like normal(crazy we have a normal huh!) and then a nurse came out and took us back to the bedside. Kyler was still working on waking up and I got to hold him. Once we knew he was starting to wake up more and that we would be going home, Mike headed to go pack up our things back at the Ronald McDonald House. Well just after Mike had left the beside, the nurse started taking his sensors off and they got final approval for release. It was time to take Kyler home. I called Mike and he hadn't left yet since he had stopped to pick up Kyler's medicine from the pharmacy so the nurse walked me and Kyler down to the lobby to meet Mike. We loaded up in the van, Kyler still extremely sleepy, and settled into his carseat. We headed back to the house and Mike went in to pack up our things and check us out. We hit the road and headed home. I sat in the back and slept the whole way home. I do not know when we will get the results of the biopsy so if we haven't heard anything in a few weeks, I will call and see if I can find out if they have heard. Since the surgery, Kyler has been healing well and walking around. Unfortunately he started running a low grade fever with a runny nose and cough. I think part of it is from him teething and his fever broke but he still has a runny nose and cough. He has been getting breathing treatments that seem to help, he will crawl over excitedly to get it when we show him the mask. After a few more days of breathing treatments, he started to have less drainage and cough. We had a couple days to wait until it was time to get his tubes placed. Monday evening while changing his diaper I noticed his incision on his scrotum was missing the stitches and looked open. It was open but wasn't bleeding or oozing anything but I figured to ask the doctor doing his tubes if they could stitch it back up while he was under for his tubes. Tuesday morning we had to be up around 5:20 to get ready to head to McPherson to get Kyler's tubes placed. My dad came over to get the big kids to school while I took Kyler(still asleep) to meet Mike at the hospital. When we got to the hospital, we began registration and then their computers stopped working so we had to wait for those to come back up before getting fully checked in. Eventually they ended up making identification bands by hand for him. They took us back and did vitals and we got to speak with doctor Gaeddart. I asked him about long term tubes or regular and we asked for the long term with our family history of tubes(only Jaida hasn't needed them). I also asked him about stitching the incision while he was under. He thought it was too late to stitch it back up but said they would look at it. It took 25 minutes from the time they took him back and when they were done and he was working on waking up. Dr. Gaeddart said he had a lot of fluid in both ears but everything went well. We didn't have to wait but maybe another 5 minutes before they took us back to the room we were in before and then they brought him in. He was a little cranky as he was waking up but he handled it way better than Gunner did after his tubes. Of course he has a lot of experience with anesthesia so it isn't as uncomfortable to him maybe. Within an hour we were loaded up and headed home. Kyler slept the entire way and was still letting some of that grogginess wear off. When we got home we ate some breakfast and then he played and relaxed for a bit. They did not end up doing anything to his incision site so I have been putting antibacterial ointment, butterfly closure strips, and water proof bandaids on it to keep it as clean as possible with it being in the area it is. I would hate to see it get infected from having feces get stuck in it. His nurse met us when we got home so I left him with her and went to pick Gunner up from school and then to run some errands. While we were gone, Kyler took a pretty good nap and shortly after we got home he woke up. He seemed to feel good and was already starting to walk around quite a bit. Since then he has been a walking machine! He is so much more stable and is back to walking more than crawling! I am excited to see how his speech progresses from here. He will go back to the ENT in the first week of March to check on the tubes and have his hearing test redone. Some of the best news I can share is that he is now done with all known surgeries! We are not planning on him needing surgery again! There is always a chance that something will come up but for now we are going to celebrate that! We will be going back to CMH to see his special care team in April and it is going to be a long day where they will do developmental testing. In the meantime, we will be enjoying not having appointments and looming surgeries!
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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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