The final post of 2017. It has sure been a year and we are looking forward to better things in 2018. Since the last update only one of the things we had prayed for has happened so far. After his last weight check, he had gained back some weight and so far has continued to. Unfortunately he is still vomiting quite a bit but we are pretty sure it is due to this lingering cold he has. We have had him checked out and thankfully his lungs are clear and it is just a regular cold that is causing a lot of mucus and congestion that sits at the back of his throat. The unfortunate part of this is that every time he coughs to clear it out it ends up making him vomit. He has also had a little fever off an on for the last 4-5 days. We are trying to do what we can for his symptoms and using the suction machine a lot.
We had a few different nurses throughout the week or so leading up to break and we have one that we get to keep! We are pretty excited about her and hope that everything all works out. She is from Salina and just moved back but the exciting part for us is that she is the parent to a child with CDH! Her child is in school so she has been through what we are going through and knows all about his specific condition with is really exciting for us. It seems crazy that we were able to get paired with a nurse who has lived first hand what we are dealing with! We only had a couple days with her before break but she will be back on the 2nd when I head back to work. We have been having a good holiday break. It started out with a fun Limo ride with Aunt Kristi to look at Christmas lights around town. Kyler and I got to join Gunner and Jaida due to the group having a few people who couldn't make it last minute. Kyler wasn't nearly as impressed as Jaida and Gunner were! Most of our break was spent with family or lounging at home. The 23rd the kids got to go swimming and have a sleep over at a hotel with cousin Britany as her gift to the kids. They had fun swimming with their cousins. Kyler got in for a little bit but it was pretty cold so he didn't stay in long. While he was in we got to try out the Water Way baby float that PT gave us. It basically is a float that goes around his neck and allows his body to float and move without tipping him backwards like a lifejacket would do. Kyler and his cousin Lee had fun playing together even if the water was too cold for them! We hosted Christmas Eve with my family and it was nice to have space(we were outgrowing Grandpa and Grandma's house) and selfishly it was nice to not have to pack up all of Kyler's equipment and stuff to go somewhere. My mom came to town a few days before and was a huge help with the baby and getting the house ready for company. The kids had fun having her stay as well. On Christmas Day Kyler started not feeling the best so Mike and the big kids went to church while the baby and I stayed home. After church Grandma Colleen came over and the kids opened their gifts. After that Mike and the baby stayed home while Jaida, Gunner, and I went to Christmas dinner at Aunt Robin's house. The next day we got to spend some time with Mike's side of the family when his brother and his family came to town from Oklahoma. Jaida and Gunner got to play and see all their cousins at Grandma's house and then later the Oklahoma crew came over with Grandma to watch the KSU game. Kyler was pretty excited to see them! The next day Gunner and Jaida got to go swimming again with the cousins at the hotel Sean and his crew were staying at. Kyler and I were going to go swimming too but he decided to fall asleep and I wasn't about to wake him up. It was too cold for him anyways, at one point Gunner's lips were blue and there was ice inside the windows. Kyler did have a couple ICD appointments. The first was the 20th where he got to work with the SLP who is working with him on feeding. She observed dad feeding him and then gave us some ideas and tips to try. Some things we are going to try is using a cup and seeing if that catches on for him and a honey bear cup that is a straw cup that keeps the drink at the top so it doesn't require as much sucking to get the drink. We will also try using the toys he brings to his mouth and dipping them in food to see if he will eat off of those. So far in trying that he does best by dipping his pacifier in but he figures out what we are doing after a few times and then stops taking it as well. We will get a 360 cup that allows him to drink from any angle and I am excited to give that a try. Last night he was interested in what I was drinking and opened for a drink of mine. It was a chocolate shake and he ended up taking a couple "drinks" or bites before he was done with that. This week he got to have a PT appointment and we did some water therapy. We were working on the same skills as we do normally just in the water. We are working with him learning to sit unsupported and reaching for toys in that position. To do the water therapy we started with the tub of water and toys but it was a little difficult supporting him from outside the tub. I ended up changing into swimsuit bottoms and a tank top and got in with him. Gunner was pretty confused why I was wearing clothes in the bathtub :) Kyler loves the water so we will be doing these exercises when its his bath times. He is getting stronger each time. I asked Shayla how far behind she thought he was and she said 2-3 months but that he was developing at an expected rate. So basically he is behind for the time in the hospital(understandably) but he is growing and gaining like you would expect any baby to. It was nice to hear he is developing typically after everything he has been through. Sometimes its hard to see those little gains when we are doing things daily but others who see him intermittently can really tell a difference. Coming up we have a cardiologist appointment on the 10th to get in initially so they can follow him. This was recommendation from the Genetics teams based on a few cases they found with the gene mutation Kyler has(SPECC1L) and some of those cases having heart issues. They weren't able to get us in on the day we will be in KC for his Special Care team appointments but thankfully they have an office in Junction City that we could get into. This is nice because I won't have to take off a full day of work and it is only 45 minutes from us, much nicer than 2.5-3 hour drive! Hopefully this will be one we only have to do once or twice a year as a precaution but we will know more after that appointment. The rest of the break has pretty much been being bundled up inside and staying out of the cold as much as possible. Friday we were to go to Beloit to check out the isle of lights but I woke up feeling awful so Jaida and Gunner got to go with Grandpa Art and Aunt Kristi and I stayed home with Mike and Kyler. Then today I was woke up to Gunner vomiting in my bed while Kyker vomited in his crib. I’m thinking we have the 24 hour bug going because we both started feeling better pretty quick. We are going into 2018 with high hopes of health and happiness. We wish you all a Happy New Year! See you next year!
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Our little man is 7 months old today! He has quite the personality and is getting more and more active each day! Some of his favorite things are watching his brother and sister do anything, take baths, and be tickled. He has also popped up his first tooth with the second not too far behind.
We were having success with little or no vomiting as soon as we switched Kyler to a 4 hour schedule and without increasing the volume per feed. We had a weight check scheduled to keep an eye on his weight and make sure he didn't lose any weight and that he was gaining enough. I was so sure that he would at least maintain his weight with not vomiting anymore. I was wrong. Mike texted me to call him. When I did he told me that Kyler had lost an ounce a day and was down a full pound. I was heart broken. It took everything I had not to start bawling. I had been so hopeful since the vomiting had pretty much stopped and I couldn't understand how he wasn't gaining weight with not throwing up all of his food anymore. The pediatrician wanted us to call the team at Children's Mercy to let them know and get directions. I called and left a message. In the meantime I spent some time trying to do some math and figure out calories and volumes and just try to make sense of everything. I also spoke with my friend who is the nurse at my school but used to be a NICU nurse. After talking with her I had some good language to use and a plan to propose when the team called me back. I was going to propose increasing his volume per feed by 5mL and then wait a couple days and keep upping that per feed volume until we found a good balance of volume, calories, and tolerance. This was a Thursday. By Friday I still had not received a call back from the team but I had already started increasing his volume. Monday rolled around and still no call back. Finally Tuesday I got to talk to the coordinator for the special care team and after visiting about the suction machine she asked how his new schedule was going. I told her about his weight loss and how we started increasing his feeds but stayed on the same 4 hour schedule. I talked to her about working our way up to maybe 150(I wasn't too sure about this because at 160mL per feed we would be at the same total volume as before where we agreed we were feeding him too much). She sounded glad that we started making changes instead of waiting and I think maybe they trust us a little more now that we have shown them we aren't going to do anything that will hurt Kyler. She ended up telling me that we could hold around 140-145mL per feed. Kyler had an appointment that afternoon for a weight check and his RSV shot. Mike ended up texting with great news, Kyler had gained his pound back in only 5 days! This was a relief because I didn't feel as much stress to quickly increase his feeds since he had gained all his weight back! We have another weight check scheduled this week to see how he is doing still. The vomiting has been better than before the change but he is still vomiting some. I am having a hard time figuring out if it is volume related or due to the congestion and extra saliva he has been battling lately. He has been fighting a little head cold and congestion that has brought gunky eyes and a little cough. Gunner passed it on to him and I and we are both still fighting it. Kyler has needed a little bit more oxygen support while dealing with the head cold so we have him bumped up to 1/4 a liter of air at night and still PRN during the day. While getting the tube feedings sorted out we continued to work on oral feedings. Kyler did okay and over the course of four to five days he ate one container of banana puree! We have him attempting oral feeding 15 minutes before his daytime tube feedings. He also took an ounce by bottle one night! It took him over an hour but he drank it and kept it down! I was beyond thrilled! The week before last we had to make the decision to ask for a new home health nurse. We were getting frustrated with the nurse we had and the things she was doing. Some of the things we noticed were not feeding him on time, not documenting things they way she was supposed to, not interacting with Kyler very much, falling asleep, and watching TV all day long. We had addressed things with her and I even typed up a three page information packet with times, activities, and all the information she would need and even with all of that we continued to have trouble. Since then we had a temporary nurse all of last week and she was amazing and I wish we could have kept her but she was only available due to her regular client being in the hospital. I was very eye opening to see how much better it was with her. This week we are getting fill ins and then hopefully after Christmas break we will have a new person full time. Things have been pretty good overall and we haven't really had any problems since the weight gain issue until Saturday night. Saturday night we were out enjoying a Christmas party with friends and Kyler was drinking a little from the sippy cup. Later in the evening he began vomiting after his feeding got done. The vomit was brown. I hooked him up to vent and was getting brown out too and no milk. This concerned me because he had just got done eating and should have had some milk in his stomach. I decided to take the g tube out and then put it back in. I was wondering if the tube was pointing into his intestines again. I don't know if it was but he was venting clear and normal looking contents by the next morning and we haven't had anymore brown vomit. We are starting to see him get some constipation and will be keeping an eye on that. Up until recently his stools have been runny and very loose. I had thought it was weird that they weren't more formed but now they are getting thicker and paste like and I wonder if it is because he is getting more food to stay down along with the little bit of baby food he is taking. Coming up we will be getting his weight checked and spending the holidays with family. I am really looking forward to having some time off to spend at home with the kids. Please say a prayer that he is gaining weight, that he kicks this cold, and that the vomiting continues to be minimal! Pretty early Friday morning Kyler threw up a little tiny amount when the nurses were doing their assessment on him. After we got him cleaned up we snuggled into the rocking chair and went back to sleep for a bit. I was exhausted and when I looked in the mirror, my eyes were bright red. It is crazy how much sleep I didn’t get that night even with nurses doing his night
time feedings. In the more normal morning hours we were told we were waiting on the doctors to round and most likely would get discharged to go home since they weren’t doing anything for him that we don’t do at home normally. It wasn’t long after that when a doctor came in and did an assessment on Kyler and then told me she was putting in the orders for him to discharged. It was time for his feed so we got him started on that and I got to packing. I left him in the nurses care and took some of the bags down to the van and also brought up his oxygen and pulse ox bag. I wanted to see what our machine read out for sats compared to the hospital one because we have felt ours reads lower than he is. We first thought this when we had taken him to the ER here in town and his machine was alarming but they hooked him up to theirs and it was reading higher and almost perfect. So while his feed was finishing(it takes an hour) I had him hooked up to double monitors and watched the numbers for a bit. Sometimes they were right on but most often his machine from home was reading 1-2 points below. His machine would be reading 94 and the hospitals would read 96. Not a huge difference but it’s good information for us to have anyways. As soon as his feed was done I got him changed and the rest of his stuff packed up and paged the nurse to finish the discharge. She came in with some paperwork and then helped us get to the van. We got to leave around 10:30am and headed home. On the way home I got a call that the suction machine was ready to be picked up and I let them know we were on the way back from KC but would be there by closing time to get it. After getting home it was time for him to eat again. Kyler was happy to be home but we only got to be home long enough for him to eat and we loaded up to go get the suction machine. After getting done at the medical supply store, we headed to get Jaida from school. By this point I felt like I was barely functional and was glad we were just a tad early because it allowed me to rest my eyes for a few minute while we waited for dismissal. When the bell rang, I got out to go meet Jaida. She wasn’t expecting me and looked right past me to start with. When she finally noticed me she got really excited and ran to me. We then left and headed to go look for a new book bag or carry bag that we could put the oxygen tank and pulse oximeter in. The one we are currently using is now ripping at the seams in two spots. We didn’t have much luck at the stores so we headed home to fix dinner and I am looking at options online. The tank is kinda heavy so I am thinking I may need a tactical backpack or something designed to be rugged and sturdy. By the evening I was feeling pretty excited, Kyler spent the whole day in the same outfit and only spit up a little. Yes I said spit up, not vomit! Then it got better! I got him to eat some puréed sweet potatoes! At first he wouldn’t open his mouth but I used my thumb to push down on his jaw while saying “open” and then put the tip of the spoon in his mouth and said “bite”. It worked and he would “chew” a little and swallowed the food. He had minimal amounts that he spit/pushed back out! I was so excited I can’t even really explain! Bedtime finally arrived and I slept hard. Kyler was tired too because he slept all night and didn’t fuss once. This morning Mike let me sleep in and got up with Kyler when he awake with a screaming cry. The sweet baby is teething and it is really getting to him right now. After getting up and taking Jaida to a birthday party 4 hours too soon(had the wrong time in my calendar and hadn’t read the invitation this morning, we came home and promised to return) we spent the day working around the house. Kyler loved playing and watching his brother and sister. Kyler got a visit from Brandi and got to meet Karis today. He was pretty happy to see them and really got interactive during their visit! It was feeding time so I tried some baby food again but he was just too tired from all of his playing to eat. He was so tired that once I hooked up the tube feed and held him, he fell asleep almost instantly. After dinner we got to FaceTime with Grandma Jody, Grandpa Bill, Grandma Doris, Uncle Shaun, and Aunt Britany in Florida. The kids loved seeing them and Kyler went back and forth between watching them on the screen and watching his older siblings being silly. While we were getting connected with them Kyler puked all over the couch and I. I was a little sad because up until that point he hadn’t thrown up ALL DAY! I will 100% take 1 times a day over 6-8 though!! Just minutes ago I was rocking him and he started crying out so I used my finger to rub his gums. Teething is tough work but hopefully this batch pops up soon. I think his bottom front teeth are super close as I could feel the tip of one of them under his gum. Tomorrow we have plans to get our Christmas tree and decorations out and I am hoping for another day of little vomit and even hopefully some oral intake! We also have plans in the upcoming week to go in for a weight check to see if cutting his daily volume wasn’t too much and to make sure he’s still gaining enough weight! |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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