We have been getting used to the changes that were made the last time. We started trying different ways to take all of Kyler's equipment with us which took some trial and error. In the end I found out that the small air tanks will fit in a backpack diaper bag along with the pulse oximeter. This makes carrying them much easier and makes leaving the house so much more doable. We have had some issues with the new formula and we have had to make some more changes. Kyler was digesting the formula better as evident from his stools and puke but as the week wore on he showed other signs of not tolerating it well. The first sign we saw was him beginning to dry heave in between puking episodes and the second was brown tinged vomit starting to come back. These were things we were starting to notice and so Thursday we made some changes....again. Thursday morning started with a vision appointment with the Infant and Child Development center. We arrived and they used a little machine to look at Kyler's eyes and measure the distances and other technical things that I can't explain. Then he got drops in his eyes to dilate them for the vision appoint with the optometrist. Once the doctor came in they used another machine to do some measurements along with contrast cards to check his vision. During this assessment they determined that Kyler is farsighted and he will need glasses. I was disappointed to hear that there is one more thing to worry about and need to deal with. I was also sad about there being one more thing on Kyler's face now that he was back on oxygen. They also did a quick hearing screen while there and his right side was reading to be referred which is something that is already scheduled for our November appoint in KC. Kyler did really well during the appointment and it was a little humorous for us when he threw up a little bit and everyone but the nurse(who comes to the house weekly for his sessions) were saying how much he threw up. We had to explain that the amount he threw up was nothing compared to what his normal emesis were like in volume! So after finding out that he would need glasses, we were sent over to an optometry office the ICD center works with to get his baby glasses ordered. We got to try only a couple styles and found one to fit over his nose bridge and then got to select a color. I was hoping for round Harry Potter style but they only had rectangular for him. After we had finished with his appointments I had a little bit of time before I had to be to work so I put in a call to our pediatrician's office to talk about the formula and how he was beginning to vomit brown tinge again(luckily not as bad as when he was hospitalized last time). Unfortunately his doctor wasn't working that day and they recommended I call the team in KC to talk with them. After finding the right number I was able to leave a message and was then waiting on a call back from the doctor on his special care team since the care coordinator was gone that day as well. A couple hours later I got to speak with the doctor directly which I thought was really nice to not have to relay messages through nurses. I explained the change to the formula and what we were seeing and basically told him I wasn't sure what we needed to do next. He told me to put Kyler back on Similac Sensitive and extend his feeding times over 45 minutes. While I had him on the phone I asked him about the oxygen for Kyler as well. We were feeling like Kyler didn't need the oxygen support 24/7 and I felt like the nasal cannula was blocking his nasal passages a little bit and making it harder for him to breathe. I had gotten some different sizes to try. The doctor said that if he was pink and happy and not looking distressed then we could take the oxygen off of him but to have him wear it while sleeping and anytime he looked distressed. I was happy to get approval for that and now we are doing spot checks with the pulse oximeter throughout the day and then using the oxygen support as needed. When Kyler catches a cold(lets be real, its coming with winter arriving), he will need to wear it continuously then. So I let Mike know to throw the other formula out(the stuff already made, not the unopened cans!) and start him back on Similac Sensitive for now. There wasn't much change the first night which isn't surprising but since then he is still puking some but I don't feel like right now he's puking as much. We will be sticking with this formula until the KC team makes a change. We have been referred to a GI doctor at CMH but will likely not see them until our other appointments towards the end of the month. All of this has brought up some questions that we will be talking with Kyler's team about. The first question I have is "are we feeding him too much?" since he is still being feed every three hours and he is 5 1/2 months old. I want to know about possibly feeding on demand like you would do with a typical baby and just have safeguards in place so he never goes too long without eating. I wonder if that would slow down his emesis and at this point he has been puking up most of what he's getting anyway so how much less nutrition would he get by feeding on demand. The other question I am wanting to ask about if backing off the fortification of his milk. Currently it is mixed to a higher calorie count and is a little bit "richer" than typical formula and I wonder if we mixed it regularly if he would have an easier time digesting it. It is so frustrating as a mom to have your baby dealing with all of these issues and you not be able to know what the answer is and to make it better. Kyler has been making progress with his strength and is starting to show a dislike for doing his exercises for the physical therapist. He has started to roll to his side but hasn't gotten all the way over yet. Today he had a physical therapy session and was just besides himself with fussiness. He was acting like he was starving and wanting a bottle or something in his mouth but would only chomp on the nipple. We are pretty sure he is teething right now and was feeling quite a bit of pain before dad gave him some Tylenol. Unfortunately it kicked in too late for him to get much out of his session from PT. Our house was slightly chaotic during his session. Kyler was crying a fussing hardcore, the big kids were running around, and we had the nursing manager from the home health agency trying to get paperwork filled out and write up his plan of care all at the same time. The good news from the chaos is that Kyler's home nurse will be starting tomorrow! I am glad but also a little nervous for her to start. It is going to be weird for us for a while to have a stranger in the house taking care of our baby instead of us or family doing it. I have heard they eventually just become part of your family and I am sure everything will be great once we get used to having someone else in our home for a large part of the day. This weekend we got to see a lot of family and we dressed Kyler and his cousin Lee up in their Halloween costumes just incase the weather is unfavorable tomorrow to take him out. They looked so cute as Mandrakes from Harry Potter! We also got an update picture of the trio of boys. They are all getting so big and starting to show their personalities! Thank you all for going on this journey with us! Please say a prayer for Kyler to handle the formula better or for us to find a better solution for him as well as one for everything with our nursing to go well! Love, The Moran's
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Our little warrior is now 5 months old! He is a happy little boy and is getting more and more social everyday! He is currently weighing 13 pounds 3 ounces. We have had quite a few changes for Kyler in the last 10 days, with most of them happening in the last 5 days. Since beginning on Similac sensitive Kyler has slowly began puking more and more. It started with him throwing up every morning around 7 am, pretty much like clockwork. Then it had started progressing into him vomiting almost all day(resulting in a full laundry basket each day). Then on Monday Kyler had his weekly PT and nursing visit. He is working on holding his head up in sideline and leaning to his sides. His right side is especially weak so that is one side he dislikes doing. He is now doing some exercises that work on leaning and using his arms to prop himself up and he is still working on tummy time and holding his head up in that position. Just tonight he did a nice job pulling his head up and forward when laying at an incline on my legs! During his visit we were visiting about how we thought the Similac Sensitive was working. We talked about how we felt like he was digesting it better because when he was throwing up it looked different after a little bit of time whereas the Gentle ease looked the same even after he had gotten it a few hours before. Shortly after that Kyler puked and after seeing it, the nurse thought it looked cuddled and that maybe it was sitting in his stomach too long. We had be told about another formula that we would try if the sensitive didn't work so we made a plan to call his pediatrician and see what we needed to do. We decided to give Similac Alimentum a try. It is a partially broken down formula that is supposed to help him digest it better. We got the first shipment today and while it's too early to tell if it will be the magic potion for him I can tell you a couple things. First it comes in small cans so we have 21 cans to store that should last us an entire month. Second, it stinks. Like really smells "disgusting" as Gunner put it. We were told that it would taste bad but since Kyler isn't taking any by mouth we weren't concerned and if he is interested in taking a bottle I have breast milk stored up to use still. He got a feeding of it and then did pretty well with it for a while until I was holding him and he decided to give me a vomit shower. It reeked. Terrible. I had to go change and in the process threw up myself trying to get out of the mess. I am hoping I can get used to the smell or the carpet cleaner we got is going to be doing overtime!
We have been waiting to hear that Kyler's application for the TA waiver has been processed with the state so that his home nursing can start. We have also been waiting to hear from the home nursing agency about meeting some potential nurses. Last week we got a message from the home nursing agency that they had a couple nurses they would like to send out to meet us. We had initially sent a possible schedule that included some nighttime nursing hours but in the meantime we have figured out a pretty solid nighttime routine. We have found a way to program the pump to kick on and off and run for the correct amount so we aren't feeling like we need help at night for him at this time. So I submitted a new schedule to see about having and we scheduled two meet and greets for today. A couple days after getting the meet and greets scheduled we got notification that Kyler's application had finally been processed and we are able to move forward. We scheduled a meeting with Amy from the management care organization to come out to do a home visit and fill out even more paperwork. The management care organization are the ones who would tell us for sure how many hours we qualify for and Amy will be our case manager for that agency. We scheduled that meeting for today as well. So today was pretty hectic and there were a few surprises along the way so I am just going to start with our morning and go from there! Today we got up and I was super exhausted after three nights in a row of working until 7:30 at night(training and then two nights of conferences). I got Kyler's feeding started and we laid around waiting for the meet and greets with the nurses. They were originally scheduled for 10 and 11 but after I submitted the new schedule I was told it would be 11 & 12. This messed with my plans to meet my teaching partner at school to do some cleaning and organizing of a shared closet but we needed to meet with the nurses so the school would have to wait. As I'm dozing off on the couch and Kyler is sleeping in the pack in play, the doorbell rings. It was 10:00. I answer the door and am surprised to see just the nurse, I was expecting the nursing manager to be with her for the meetings. So I am immediately feeling unprepared as I had no idea what to expect for this meeting or what it should be like. Should I explain EVERYTHING or would they ask me the questions. Was I supposed to ask them anything and if so what? I offered her a seat and excused myself for the moment to go wake up Mike(who had gone to sleep from working the night before) so he could come out to meet her. I told her I wasn't really sure how the meeting was supposed to run and we just kinda went with it. First we met with Miss Rachel, Kyler woke up with doorbell so he sat with us while we talked and he was smiling at her and checking her out. We ended up doing an overview of Kyler's medical history and his daily routine. I quickly explained the setup we had going on and some of the things I thought she might like to know about us. She shared with us that she is a grandma whose grandkids are in California. We liked our first impression of her and like I mentioned before Kyler was smiling at her and seemed to like her. We finished visiting and waited for the next one to come at 11. We assumed that we are back to the original schedule. Well nobody showed up at 11 but in the meantime we got a call from Children's Mercy and the Special Care Clinic(NEON). They had finally received the results of the home oxygen study. During the 48 hours that Kyler wore the monitor he was sitting at 90% or below about 23% of the time. This means that his oxygen levels were lower for a long enough time that they wanted to put him back on oxygen and he just doesn't really have any reserve oxygen in his little body. I can't say I was really surprised but I was disappointed for sure. They had already sent in the order for him to be put on an 8th of a liter continuously. With his condition and the fact that he was dropping enough, they felt it was best to give him just a little support to aid his growing and to help him get through the winter months. After getting on the oxygen for a couple weeks they will have us do another short home study while on oxygen to make sure the levels he is getting are enough. The goal is to have him sitting at 95% to 98%. With being on oxygen he will also have to be on a pulse oximeter full time as well. Disappointment at having to have the wires and tubing to work around again. We went over the parameters that they were ordering for the machine and his low level alarm was set at 88% and we were given instructions to let them know if he spent a good stretch of time at 90 or below. We were also given directions to call the company after we got off the phone with her to get the oxygen delivery set up. Luckily the service is local so after making contact with them so getting the equipment was going to be fairly simple. Then just minutes before 12 the second nurse, Miss Norma, showed up. We had a better idea about what the meeting would be like so it went a bit quicker and we learned that she would be the one that would help fill in the hours and the First Lady would be more of the full time nurse taking care of Kyler. After that meeting was over Mike left to go help his mom and the kids and I loaded up to head to my school. As I was pulling out of the drive I got a call from Salina Regional Home Medical Supply and they were calling to set up the oxygen delivery. It was scheduled for 3:30 which meant I only had a couple hours to get into my classroom and get cleaning before needing to be back home. I am sure glad that we had today off from work! When it was time we loaded back up and met Mike at home. They brought the equipment and went over how to use it. We have a big machine that uses room air to pump into the tubing and it attached to a 25 foot piece of hose. The machine is a little loud but not as loud as an air compressor thankfully! Kyler also has a portable air tank in two sizes, one has enough for 8 hours out and about and the other holds about 72 hours worth. We also got the monitor hooked up and running. The monitor so far has been the "worse" part because with it brings the beeping noises and this machines not quite when it goes off. Kyler was wide awake when we got him hooked up and was kicking up a storm which was sending the machine into a tizzy and driving us batty from the beeping! I am going to have to read the manual to see if there is a way to turn the volume down at all. Kyler didn't seem to mind the oxygen cannulas in his nose and I figure that is because he has spend more time of his life with them than without. So we are learning how to manage the wires and quickly found that our current organization and system at home for his supplies was now not sufficient for what we needed. We now had a little bit of time until our final scheduled meeting for the day was to begin(at 7:30pm). My mom had come to town so she stayed with the kids while Mike and I went in search of some a new organization system to use with his new equipment. While we were out we found out that Amy was running ahead of schedule so she could meet earlier so we finished our shopping and headed home. Our meeting took around 2 hours and we had to answer a lot of detailed questions about Kyler, his daily routine, which tasks we would be having the nurses do, and a few other things. We found out that he was approved for the hours they eligibility person had recommended so we are approved to start home nursing as soon as the home nursing manager comes out and does a write up and formally opens his case. I will be emailing her tomorrow but I am not sure if she works weekends but hopefully his nursing care will start sometime next week and we can give Grandpa Art a break! We also learned that we may need to look into switching to a different DME(medical supply company) due to coverage that he gets through the TA waiver so we will have some calling to do next week on that. So here it is 12:20 am and I am 100% worn out. My day that was going to be pretty laid back and allow me to get something accomplished at home and in my classroom, turned into a pinball feeling kind of day. I am going to go shower and get the horrid smelling formula off of me before passing out for the night! Thank you all for the continued prayers for our little man. Today just reminded us that he may have many battle to continue to face each day. For me, please pray that I can get used to the smell of the new formula so that we aren't both puking all over, or better yet pray that this formula helps him get the puking under control! Well it has been a while since I've done an update so I thought tonight was as good as any! I have now been back to work a little over a week and it has been a pretty smooth return. My work family has been amazing as always and helped me come back by providing us meals. My sub did an amazing job and I have a really great class! All of those things have made leaving Kyler easier on me! I am still getting my bearings about me and learn my new schedule, new kids, and new routines on the go but I have two amazing paras working with me that help me out a lot! As for Kyler's update, we ended up deciding to go with the Similac Sensitive but cut the multivitamin since those two react badly together. Kyler still vomits but I think he handles the new formula better. He has been puking every single morning right around 7 and then it depends on how much mucus he has if he continues to puke during the day a lot. He is getting his weekly nursing and PT(physical therapy) visits and making progress and getting stronger! He is still needing tummy time and working on some of his head control muscles. We are also working with him to do assisted rolling over to help him engage some of the muscle groups he isn't using right now. He is still working on putting weight on his legs(he likes to pull them up to his body) but I think once he figures it out he will be good to go because he sure kicks those little legs quite a bit(the right leg more than the left)! Kyler hasn't been taking much by mouth even though we got the "okay" from the doctors to try solid foods he doesn't seem too interested still. We had one night where he did really great with bananas but then the next night he didn't care for them much. I am still hopeful that it will come along since he is beginning to expand what he will allow in his mouth. He is now taking a new kind of pacifier, will sometimes let the spoon in his mouth, letting the bottle be in his mouth, and really sucking on his thumb and fingers! I am trying to find oral exercises for him for the sucking because when he has the bottle in his mouth he is mainly chewing and making clicking sounds with it but I don't know what to do to help him learn those skills. I am going to be emailing the OT we worked with while in the NICU and see if she has any ideas for us to try until we get someone on the ICD team to begin working with him on those skills(they were waiting to have a person until he was a little farther along from when we started). He has been a little more congested sounding and he may have a small head cold that is causing him to puke more from gagging and choking on drainage so we are doing a lot of propping up and using a humidifier to help. Kyler is a very happy little dude and is giving us more and more smiles and giggles! Today during his ICD session he even said "mama" but I wasn't there to hear it so I am not trying to get him to say it for me! Since I am back at work and we are still waiting on the state approval for the TA waiver which will help Kyler with home nursing, my dad has been helping us out almost every day to take care of Kyler(and the big kids when they don't have school) so that Mike can get a little sleep to be able to function at work in the evenings. Kyler is getting lots of love and attention while I am at work and the big kids enjoy getting to see grandpa so often! We have also found a way to make our overnights easier on us(especially for me when Mike is at work). I have learned how to program the pump the run on a schedule and give Kyler the exact amount of milk he needs at each feeding time automatically! This was a game changer! I have joined multiple Facebook groups for parents and caregivers who have some of the same issues to deal with as we are with Kyler and it has been so helpful. These groups are where I learned how to program the pump to do it's magic! Kyler is sleeping through the night unless he vomits or is refluxing really badly so I am able to get a pretty much full nights sleep unless he is vomiting a lot! I am excited that he is able to sleep all night because that will make it easier for him and us down the road when we don't have to do night time feedings. I am hoping at that point that we won't have to fight him on sleep training! The last few days Kyler has been hooked up to a pulse oximeter as part of the home study we had planned to do. He is wearing the monitor continuously for 4-5 days to watch his oxygen levels. The machine lasts for 2 days and then has to be taken in to get another. The used machine will then be sent off to a special place that will download the data and then send the data to Children's to analyze. The monitor is kind of finicky and doesn't always read accurately, especially if he is kicking around(which he is doing more of lately) so I am not really sure how to gauge the readings I am seeing. Some of the times I am seeing some mid to high 80's which would be setting off the alarms if he was in the hospital(thankfully this monitor doesn't make noise!!!!) but other times its reading 95 or higher. I am not sure what the target range is for him and what they will say but I feel like his saturation numbers are a little lower than they should be(low 90's to high 80's). I feel like I can pretty well tell when it is giving an accurate number from my time monitor watching in the NICU! He only has another day or day two left of wearing it and then I am not sure how long it will take to get word about the results from CMH. We currently are not scheduled to go back to CMH until Thanksgiving break(yay for not having to take off work!) and during that visit we may be meeting with a reporter and telling our and Kyler's story, mainly focusing on his grand entrance to our world and the process of getting from Salina to KC while in labor with a high risk pregnancy/baby! Thank you all for the continued prayers for Kyler as he continues to work on learning his new skills and trying to overcome the delays he has at this time!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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