The last two days since returning from spring break have been exhausting! Monday after work we headed to a local shirt printing company to get ideas on a fundraiser shirt for Kyler. After discussing options we submitted our design and are now in the process of taking orders. After that I hurried home to check on Kyler and how he behaved for the substitute nurse. He was a good boy and she was impressed with how much he's changed since she last saw him(back in December). The rest of my evening was spent finishing up gathering what I thought I needed for taxes and snuggling the sweet boy. While I was playing with him and leaning him way back, I noticed a patch of white on his upper gum. His 3rd tooth broke through! Today has been pretty busy and tiring as well. This morning started with Kyler being really fussy, not really his m.o. As I snuggled him before I had to leave for work, I thought he was struggling with that tooth and asked Mike to mention it to the nurse when she got there so she could give him Tylenol if needed. At work my caller ID popped up with a Children's Mercy number. It was someone calling to get us set up with the Interdisciplinary Pediatric Feeding and Swallowing Program that GI referred Kyler to last week. I was surprised to hear from them considering we were told there was a long wait list, I had assumed it would be this summer before we heard from them. The lady on the phone said that she would be sending me an email with a survey to fill out and then once they have the survey, they will call back and schedule his first appointment. I gave her my email and continued on my day with plans to fill out the survey tonight. After work was over I quickly left and met Mike at the Tax preparer's office to get our taxes done. There were just a couple things I didn't have with me, like the kids birth certificates which the IRS are now requiring. At home I began pulling out the kids' certificates and realized we never got the corrected copy of Kyler's. The one we were sent after his birth has my maiden name misspelled by one letter and I had requested that the hospital correct the error and resubmit for us. I was told they would but had since forgotten about it and have never received the updated one, so I will be making some phone calls in the morning and trying to get that sorted out again. As I got the report from the nurse as she was finishing her shift, I found out Kyler is running a temperature of 99.5 and slept most of the day. I am hoping it is just teeth because along with the one that just broke through(and is still coming down), it feeling like another on the bottom isn't too far behind. I am a little suspicious that it could be another ear infection since last week at the hearing test he had fluid in his ear. I have asked Kim(ICD nurse) to check it out when she sees him tomorrow. After starting his 5:00 feed, I snuggled him up and he was defiantly warm. After a dose of ibuprofen and some rocking, he was fast asleep. I laid him in his crib while we ate dinner and he didn't wake back up until 8:45. I may have a long night ahead of me. In addition to him sleeping, Gunner fell asleep on the couch in the 10 minutes it took me to finish dinner and set the table. Apparently we need to catch up on some sleep around here. With diner done and the kids in bed, I started in on the surgery from the feeding clinic. It started off with me filling in most of Kyler's medical history(this part I felt was a little silly since all of his major services have been done at CMH and the minor things have been shared with them). I was about 1/2-1/3 of the way done and my browser timed out due to the large memory usage(I didn't even know it could do that). Of course I hadn't scanned all the way to the bottom to see the "Save and return" button. Lesson learned. So I started again, this time saving and returning every so often. A couple hours later, yes I said a couple, I finished the survey. I wanted a record of it so before submitting, I saved it to my computer. The final document was twenty-seven pages long...27! Whew, I am glad that is done! After the surgery was submitted, it said we should be contacted within a week to schedule the appointment. In the original email with the survey link, there was information about the 1st appointment which is an evaluation. It said that we should expect for the appointment to last 2-3 hours and that the Multidisciplinary Feeding Team consists of a medical provider (physician or pediatric nurse practitioner), speech pathologist, dietitian, occupational therapist and psychologist. They will watch him attempt some feeding and do an assessment, then they will step out and discuss him and what they saw. After that they will return with suggestions and a plan. We were also given a list of things to bring which basically included any and all feeding tools or foods that we use with him. We were also asked to bring medical paperwork, early intervention paperwork, and videos of him feeding at home. Now we wait to get the appointment scheduled.
As I mentioned before we are taking orders for the shirt for Kyler's fundraiser. The shirt is $15.oo and all proceeds will be donated by Kyler to Children's Mercy for his 1st birthday. If you are interested in ordering a shirt you can do so by clicking the link. Order Shirt Here
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We are having a fundraiser for Kyler's 1st birthday. He will be donating the proceeds to Children's Mercy Hospital. April is CDH awareness month with April 19th being International CDH Awareness day. We are taking orders until April 5th so that we can get them out before the 19th! Please check out the link below to place an order!
https://goo.gl/forms/ghzxJi9aNh4BvJbB3 It has been a couple weeks since the last update and not too much has happened during that time. To start with, Kyler received his last RSV shot for the season. The nurse said that she was hoping insurance will extend the season so that he can receive a little more protection because they are just now seeing a peak in the RSV cases. Unfortunately that isn't up to the doctors offices, it is what insurance says, so we are just assuming he is done for this year unless they contact us and tell us differently. We made it to spring break and kicked it off with a weekend full of family. Baby Lee came to town so we got to spend some time with him and the rest of the family and on the 17th we celebrated Liam's 1st birthday! Kyler had a lot of fun playing with the balloons and showed a new trick off. He is now making kissing sounds to people and it is incredibly adorable! We then got to spend the day with family and ended the evening enjoying food and playing cards. Kyler and I even took a quick trip to a friends house to wish her happy birthday as well! The first weekend of spring break, Kyler turned 10 months old. He is rolling to get to toys he wants and is signing "more". He is also "tasting" more foods. If he can hold it, it will go in his mouth. He has thrown up some from getting pieces too far back unexpectedly, but he is really showing an interest in eating food! To end out the weekend, we took a trip to visit Great Grandma Hargadine in Little River. We haven't been able to see her in a while due to the nursing home having a lot of illness and they were finally clear. Grandma had fun seeing Kyler and the kids! The next week started out with messing around the house, taking care of things that have been put off for a while. Then Kyler had PT. He showed off his rolling skills but then he had to work on pivoting to get to toys instead of being a roly-poly! What we want to see him do more often is roll and then moves his arms(while pushing up on them) and the rest of his body to turn to get to something instead of rolling again to crash into it. Next up for our week was heading to KC for Kyler's appointments. For these appointments, Jaida and Gunner were getting to go since they weren't in school. They were pretty excited to get to go to the hospital. We loaded up and headed out around 7:30 am. We arrived and got up to the first appointment which was with GI. This was the appointment we weren't looking forward to because of the issues we had the previous week. When we got into the appointment, we didn't get to see the doctor. This was disappointing because we wanted to speak to him about the medication issue, not a nurse who was just joining in on Kyler's care. We ended up speaking with a nurse practitioner for the appointment. We brought up what we were upset about and she then explained what the medications were for and why they were prescribed. One was prescribed because even though his test was normal, sometimes there can still be delays in emptying. The other was prescribed to help with the stomach relaxing to accommodate more volume easier. We ended up not doing either of the medications because he hadn't been throwing up much, and what he has been throwing up seems to be caused by congestion and drainage. I also brought up my desire to do a blended diet over a toddler formula when he turns one(in 2 short months). The nurse practitioner thought that sounded okay and said that they could have a dietitian contact us because we could probably start trying some out. They also decided to put in a referral to get him on a feeding team for another set of eyes to help with his nutritional needs. She also said that the team could communicate with local people since he would only be seen by them every 3-4 months. There is a pretty long wait list so its possible he doesn't get in with that team until this summer. His measurements at this appointment showed he is weighing 7.695kg (16lbs 15oz), he is 69.5cm(27.4 inches) tall, and his head is 46cm. Next up we had some time to kill waiting for his hearing test so we visited the 3rd floor and saw Dana, and a couple others briefly before heading to grab lunch at Subway(except for Gunner who was dead set on having chicken strips from the hospital cafe). After we had lunch, we headed to the outpatient clinics to have the hearing test done. Mike and big kids stayed in the waiting room and I took Kyler back into the booth. The first part of the test was the tech using a machine to check for fluid and measuring some levels. This test showed that one ear wasn't reading and the other had some fluid. The tech wasn't sure if the test would work based on those readings but we went ahead and gave it a try. She went to a connected booth to control the test, and I had Kyler on my lap. It didn't take very long before I suspected he wasn't passing. I was hearing noises and he wasn't even reacting in anyway to them. Sure enough she came out an explained that the test was showing mild hearing loss but she wouldn't be surprised if that was due to the congestion and fluid in his ears. We made a plan to reschedule for when we go back to KC in April for Special Care Clinic and re-check them then. I mentioned that Kim(ICD nurse) could check his ears like she did before starting the test and she thought it would be good to do that a day or two before the appointment. If the test shows he still has fluid, then we will cancel the hearing test and be referred for ENT. I would really not be surprised if he still has fluid and needs tubes. Gunner needed them and was only hearing about 40% at the time he had his placed and he is just planning on getting his removed in the next month after a few years! With the appointments done, we had a good chunk of time to spend while waiting to meet up with my friend Brandi for dinner. With the weather being a little chilly with some sprinkles in KC that day, we decided to go to the mall for a while before finding something fun for Jaida and Gunner to do. Jaida and Gunner had fun riding the carrousel in the Oak Park Mall. Then Jaida and I enjoyed some nerdy fun checking out Harry Potter and Doctor Who merchandise in a store called Box Lunch! I ended up getting a few new pieces to my wardrobe which was difficult, because I really don't like buying clothes! After we finished shopping, we took the kids to Monkey Bizness. We had gone to one in Colorado a couple years back and the kids enjoyed it. This one was smaller but there was still plenty for the kids to do. We ended up spending a couple hours there and Jaida and Gunner went full speed the whole time. Kyler was the only baby there at that time, so he got the whole infant area to himself. That was nice because it was feeding time so I was able to hook him up and he could play and roll around without worrying about other babies around(germs and cords)! We had a 40 minute drive to meet Brandi so we finished up and headed out. I was glad for the longer car ride because I had two tired children who really needed some kind of nap and the car ride was perfect for that. We actually made it quicker than the GPS said so we waited in the car for a little extra rest. Soon it was time for dinner and it was so nice to see Brandi and Abe. After a delicious dinner, we hit the road home. It was around midnight before we got home and I was so thankful for getting to sleep in a little bit on Wednesday morning! We started the morning with cleaning Jaida's room. This involved going through her clothes and getting rid of things that no longer fit, as well as finding a place for all of her things. We worked on it until the afternoon when, Jaida and I went to her 7 year old check up. She is weighing 48 pounds and is 46.4 inches tall! After her appointment we stopped by to pick up some medical supplies for Kyler and then went to the store. It was fun getting to go with just her, we don't normally get just girl time together. The rest of the day we spent finishing cleaning and organizing Jaida's room(it was so messy) minus some time we took to go help my dad and then have dinner with him. The next day it was Gunner's turn to get his room cleaned and organized. Luckily his took only a fraction of the time and we finished pretty early in the day which allowed me to get started in the basement. Jaida got to spend a few hours at a friends house playing. I have decided to have a garage sale and so I pulled out all of the boxes of clothes I have had stored and put them in piles of things I want to save for keepsakes, things for Kyler to grow into, things to save for my best friend, and things to sell. I made a giant mess in the basement and after making the piles called it quits for the day. I was exhausted from all the organizing and cleaning from the last two days! Friday Jaida had a friend over for the day and we mainly just hung out around the house. The girls did a pretty nice job of including Gunner and letting him play with them! Kyler spent most of his time with the nurse who was here most of the week. We won't get to see her for a while because she is taking vacation for the next week and we will have a replacement nurse for that time. Luckily the nurse that is filling in is one who we had for a few days after we had to fire the first nurse. The home health lady who called to set up the replacement told me that once this nurse heard who it was for, she said yes before ever hearing the hours and days needed! Kyler is loved by so many! After dinner Jaida and I had a date to watch Moana and make some shirts, Gunner ended up joining us for the movie! I made the kids each a Gryffindor Quidditch shirt and I made me a shirt to wear next time I play cards! Saturday we hung around the house and had a couple visitors. Jaida and Gunner got to play with Harper while the moms went through clothes and I even got them organized thanks to Cheryl's help! Then we got to see Miranda also! We finished our night watching the KSU basketball game. Today was pretty busy. First we had Palm Sunday with Gunner's preschool. He got to sing some songs and then we had a lunch and Easter egg hunt. Kyler was pretty tired and ended up sleeping through the whole service, even with loud songs playing! After church, we had a home visit from Amy, who is Kyler's case manager through medicate. We had to update his paperwork and talk about his goals for the future. After we were done with that meeting, we started getting things together for taxes. This year we have a lot of stuff to put together with all of Kyler's medical stuff. One thing I had to do was go through and figure out mileage for all of his appointments. That took a while but thankfully our final NICU nurse, Carol, had told me to keep the NICU logs to use for figuring out trips for taxes, that was a huge help. I also was able to pull up appointment history from all of our providers to get the rest of the trips. I just finished getting what I could get together now and will be glad when its all turned in. In other news for Kyler, he has been vomiting off and on again. I think it may be due to congestion and drainage but it could also be due to the increase in volume I gave him. When he was keeping stuff down, I was able to move him to a 30 minute feeding time instead of an hour. That has been nice since he is now rolling, he gets tangled up pretty easily. I knew that the doctors are looking for him to gain more weight so I went ahead and upped his feeding volume by 5ml each feeding. This basically gives him an extra ounce each day. He has been vomiting some since making that change but again, I am not sure if its the volume or the congestion. We slowed is feed time down to 40 minutes and that has helped some but it doesn't help all the time. I think we might just have to deal with surprise episodes of vomiting. I am still hopeful that once he starts a blended diet, that the heavier foods may help reduce the vomiting more still but time will tell. One thing we are looking forward to is that April is CDH awareness month with April 19th being the international CDH day. We are looking to make up shirts to spread awareness and possibly use it as a fundraiser in which Kyler can donate the profits for his first birthday. We are looking to donate to either CMH or Ronald McDonal House. Along with that he will be donating his clothing that is designed for wires and tubes. When I went through the boxes of clothes in my basement, one pile was made for side snap onesies, pajamas that button, and other clothes that we would like to donate for the babies in the NICU. I am hoping to get the shirt design and ordering figured out this week so that we can get the shirts out to people in time for April 19th but more information will be coming on that as soon as I can. We are set to go back to CMH on April 25 so until then we will enjoy a month of no appointments, and start the countdown to his 1st birthday! One more thing to add! Kyler is featured on the CMH website for our flight from Salina to Children’s Mercy! Here is the link! https://www.childrensmercy.org/fetal-health-center/taking-flight/ Last Monday I awaited a call from KC to find out if Kyler was going to get to have the gastric emptying study done. By 10:00am I had not heard from them so I decided to call. The first lady I was able to speak to in radiology was able to get Kyler on the schedule for the following day when we were going to be down there. Thankfully it wasn't quite as early as I was told from the other lady I had spoken with! He was on the schedule for 8:30am which meant we only had to leave around 5:30 am instead of 4:30am! Monday afternoon Kyler had his physical therapy session and we met with the case manager for his ICD services to resign and update his IFSP. This is done every 6 months and Kyler has already gotten services for that long. Kyler wasn't too excited to work for Shayla. He was working on his core muscles and control by sitting on a stability ball. He worked on reaching across his body and trying to transition out of sitting by putting an arm down for support. He also worked on tall kneeling by wearing some support shorts that help him hold his hips together instead of them spreading way out. While updating his IFSP we had to set the goal for him for the next 6 months. We aren't very sure he will crawl with such a big noggin and weaker neck muscles so his goal is set to be pulling to stand independently and working on him cruising around the furniture. After we were done with that session we started getting the things together to head to KC in the morning. Since we weren't staying the night, what we had to take was drastically less but I still have to make lists of everything he might need, just in case. After loading up as much as possible the night before it was time for sleep. Unfortunately I wasn't able to get to bed very early since I had to wait to start his night feed and then get him rocked to sleep so 5 am came very early for me. We loaded the baby up in his jammies and I took a pillow and blanket and we headed out. Thankfully Mike does much better than I in early mornings and little sleep because I was able to rest on the way there while he drove. We arrived about 30 minutes early and didn't have to fight much morning traffic. We got Kyler changed into some clothes and made our way to get checked in. I was obviously very tired because I couldn't press the correct elevator button to get us where we needed to go! We got Kyler checked in and he was called back. They gave us a gown for him to wear and we gave them his formula. They started by mixing 60ml with 10mL of the radioactive fluid that would be used to see the movement of the formula. Next they pushed it in with a syringe while Kyler laid on the table. They pushed the full amount in within 10 minutes. I was worried that he might vomit with it going in so quickly but he handled it just fine! Next they wrapped up his right arm and tied down his legs so that they would be able to get the pictures clearly. They left his left arm out so that he could hold his pacifier. I was pretty impressed with how well he did with being tied down(I wouldn't have done so well myself). They told us that this test would take an hour and if he vomited, they would have to stop the test. I was not sure how he would handle being stuck in that position for a whole hour! They got him in position and I was able to sit right beside the machine and talk to him. He spent a while playing the dropsy game with his pacifier, singing to himself, and using his free hand to explore the part of the machine he could reach. About half way through he started to get a little fussy so I asked for the lights to be turned down and I sang to him and rubbed his head. He fell asleep and stayed asleep for the last 20 minutes or so of the test! He is such a champ and handles things so well. After they were done we were told that we would get notified of the results in 24-48 hours. The tech said that they would send the images(it took one per minute for the whole study) to a radiologist who would tell the ordering doctor what they read and then the ordering doctor would call us with the results. The order doctor in Kyler's case was his GI doctor. We then had about 45 minutes until his next appointment with surgery and it was too early to eat lunch so we took a trip the 3rd floor to see if our friends were free to say hi. Dana was free and we got to see her along with a couple other people who recognized Kyler from the calendar he is on! We also got to see one of the ultrasound techs that did the scans before he was born. It is fun to get to go back and visit with those people who were part of Kyler's team in the beginning. We were asked about being support people for other families and we agreed. Now we just wait to see if any families want to visit with us about our experience or to have someone to ask questions and get information that might help them. Next we headed across the hospital to the surgery clinic. Again, super tired, I pressed the wrong floor. We made it eventually and got checked in. Two nurses came back at the same time and called for Skyler and Kyler so after a chuckle we went with the assigned nurse and taken back to a room. They took Kyler's weight and he was 16 pounds 4 ounces. Not quite the weight gain I expected since he hadn't thrown up for a half a week. When the nurse practitioner came in she checked up his incisions and they all looked good. His testicle was down and palpable. We talked to them about how he was still puking after the surgery but we had the test done in the morning and he hadn't vomited in about 4-5 days. Then we talked about the surgery to bring Kyler's left testicle down. They proposed sometime in August which I promptly said wouldn't work. I asked if we could do it over the summer so I wouldn't have to miss work for it and they thought that would be okay and said a scheduling person would be in touch with us. We loaded up and headed out of there. We decided to stop in Topeka on the way back for a bite to eat and I was excited that Kyler took a couple small bites off my fork at the restaurant. The rest of the week went by pretty fast. At one point my Facebook "On this day" popped up a reminder of 5 years ago when Jaida had turned 2. At 2 years old she was 21 pounds. That is only 5 pounds heavier than Kyler is currently. I saved a screenshot so I can show Kyler's doctors so they might believe me when I tell them I don't have large babies and they are concerned about his weight! The end of the week got a little interesting. I kept checking the patient portal looking for the results but the study was saying "pending until March 9th" under the radiology tab. While I was looking, I found the notes from our meeting with surgery and read them over. When I opened the document I noticed it looked different and then at the very bottom I saw where the results from the study were listed. According to what I read, his emptying was normal. I was expecting a call from them to explain the results to me and to confirm what I had read. Friday morning we had passes the 24-48 hour time frame we were given for them to be calling and giving us the results but my phone rang during a meeting at school and I excused myself to answer, expecting it to be the test results. It wasn't. It was a lady from the GI clinic wanting to know if I had seen the patient portal message. Since I had been on there yesterday and there wasn't something, I assumed she meant a new one. I told her no and she said that Dr. Cocjin said we could trial him on a medicine or he could come in for an emptying study. I stopped her right there and informed her that he already did the test and we were waiting on the results. "Uh. Umm. You already did the study? Ok. I am going to have to have someone call you back." I was in disbelief. I couldn't believe they didn't know we had done it. We talked to a nurse last week who had the doctor put in an order for the test(otherwise he wouldn't have been able to get it done) and they didn't know we were done when we should have been given results already! I didn't hear anything the rest of the day from KC. I was getting ready to leave work when I had a text from Mike telling me to call his ASAP. He had received a call from our pharmacy for a new medication for Kyler but he didn't know about it so he was wondering if I had talked to KC. After explaining to him the call I had gotten that morning I called the GI clinic and tried to find out what this medicine was. The person I spoke with couldn't tell which the new medication was out of his list, and I didn't know the name of it so they asked if the pharmacy could tell me. I hung up and called the pharmacy. They were able to give me the name of it, and it was something I hadn't heard of. I was expecting it to be the medicine for delayed gastric emptying. I asked who prescribed it and was told it was Dr. Cocjin and then I asked was it was for. They told me it was for allergies. I was now annoyed and confused. I had no idea why they would prescribe him something for allergies and I was annoyed that they didn't talk to us first. I called back to the GI clinic and ended up having to leave a message. I asked what this medicine was, why wasn't it discussed with us, and let them know we were still waiting on hearing the results of the test. 30-45 minutes later I got a call back and it was a nurse in Dr. Cocjin's office. I probably was a little short with the nurse but I was pretty upset by this point. I asked what it was and she told me it was an appetite stimulant. WHAT?! is what I was screaming in my head. Then the nurse said "nobody has talked to you about this?" No, I wouldn't be ticked if we had discussed this with the doctor. After hearing this and after I said that we still didn't have the results of the test and the nurse said she would have someone call us but it probably wouldn't be today since it was so late in the day. I had now been told it was an allergy medicine and an appetite stimulant, neither of which made sense and I still had no idea why it was prescribed. In addition we didn't have the official results of the test. I was getting more annoyed and upset as time went on. Our home health nurse was just as confused and so I called his ICD nurse. She too didn't understand the medicine for an appetite stimulant. 1st off, Kyler doesn't get to choose when he eats so his feeds aren't based on hunger cues so that wouldn't help anything. 2nd, some of the ICD nurses other g-tube babies are on an appetite stimulant but they are in the weaning process and actually eating food orally. Nothing was making any kind of sense and I just was getting mad that we found out about a new medication from the pharmacy and that we weren't at all included in the discussions for any of it. Over the weekend I was able to let it go and knowing that we would be seeing his GI doctor face to face over spring break to discuss this helped. We ended up taking Kyler out to a restaurant to see a whole bunch of my family that was getting together. It was fun to see everyone and Kyler got some love from some family he doesn't see often. At one point one of our cousin's took a picture of him being held by her son and overtime she showed the picture to Kyler she smiled the biggest smile. It was so funny! The rest of the day was spent at home laying around playing. On Sunday we had some friends over. Jaida and Gunner got to play with their son Brody while we chatted. It was fun to get to be social for once in such a long while. After dinner on Sunday, we made a quick run out to Aunt Robin's house to see Britney and baby Lee. It was fun to see the boys together again. They were practicing sharing toys! This morning I got a call from KC but missed it so I called back and had to leave a message. Finally a couple hours later they called again. It was nurse telling me the results of the test and that Dr. Cocjin prescribed the medicine for Kyler's vomiting. I was told the results showed normal emptying. I told the nurse that we were pretty upset that this medicine was prescribed without someone talking to us and that we were supposed to hear results after 24-48 hours and it was five days later and we are just now hearing. Then she said the results weren't available until Friday and thats why they were calling now. I didn't call her a liar but I wanted to because I accidentally saw the results last Thursday! I that since nobody has followed up with us for us to be able to tell them that Kyler hadn't thrown up in about ten days. Then she said "well then I wouldn't give him the medicine." I had to hold back and not yell but I told her in a not so happy way that I would not be giving him any medicine since I had no idea what it was or what it was for. She just said she understood and wanted to know if there was anything else I wanted put in the notes. I said no and we ended the call. I am just flabbergasted at the GI clinic. From not knowing he had the test done(even though they ordered it) to prescribing him a medicine(which I was told 3 different reasons for) and especially for not being notified or consulted on adding a medication and us finding out through our local pharmacy! Since Kyler was still vomiting after the fundo, I really started thinking more and more about doing a blended diet with Kyler. That is where we take "normal" food and blend it to a consistency to push through Kyler's G-tube. With Kyler coming up on one year soon, he will have to switch off infant formula and I am really interested in doing a blended diet over a toddler formula. Kim, our ICD nurse, has a contact who is a RN at the same pediatricians office Kyler goes to and has personally used the blended diet. I am wanting to meet and get more information soon so that I can be prepared to start it with Kyler when it is appropriate. Now that we have the test done and it was normal, and Kyler isn't vomiting for the most part, we are now just doing our daily thing until our next appointment on the 20th. We will meet with GI and that isn't going to be the nicest of appointments as we discuss and share our displeasure over the situation that happened. Then we will take Kyler for a hearing test. He will be routinely checked because he is at high risk for hearing issues. He is now old enough to attempt the hearing test in the booth. I don't anticipate any issues since he will turn at look at all sorts of noises around home. We are counting down the days until Spring Break starts and we get to have some "stay home days" together. I am starting to debate not saying anything about any progress Kyler makes. After posting that the new timing for the feedings, he started vomiting again. So we retimed his feeds to 2 hours. When I got home from work after making that change and it was time for his next feed, we started him at 2 hours again. Within ten minutes of it starting he was vomiting again. I was so frustrated. I don't understand how he can still be throwing up at even such a slow rate and it is discouraging. At that point I sent a message to the GI team to find out about getting some information on the medicine they had put in their notes that we could try, it was something the nurse who I spoke with before had mentioned. In the meantime I talked to our ICD nurse and found out that the medicine is used to treat delayed gastric emptying, which is when the body doesn't move things through fast enough and gets back up. This could be causing his vomiting because he is too full even without his volumes changing. Another thing I have read about DGE(delayed gastric emptying) is that motility can change from day to day which could explain why he is fine for a few days or more and then starts vomiting again. Finally on Friday I got a call from the GI department and they said they could go ahead and prescribe the medicine and trial it or set him up for a test to see if he has DGE. I opted for the test because I would rather not put him on a medicine he doesn't need and I would rather know for sure. I asked them to see if they could get him in on Tuesday since we will already be down there. The scheduler said there weren't any openings but they may be able to get him in a different room but wouldn't know until Monday. If they are able to get him in, it will have to be the very first appointment at 7:30am which will mean a very early morning for us. If they can't get him in, they will try for on the 20th when we are back again. He was doing really well and started trying some different foods in his mouth this week! He has now tried French fries, hamburger, potato chips, bread, animal crackers, Ritz crackers, and some cookies! He isn't really eating them but he is putting them in his mouth and tasting them so I am calling that progress! I think he may have gotten a few bites down but not enough to count for sure. Also today he was interested in my cup and acted like he was drinking but as soon as the water hit his mouth he held it in and then let it spill out. Again, I am calling that progress that he is starting to know what to do with food and drinks! I have concluded that we need to get foods that he can hold and be in control of, he is much more open to putting food items in his mouth when he is the one doing it! Today brought back some vomiting, he vomited a lot with his first feeding of the day. Then when it was time for the next feeding, I vented him and saw yellow bile coming back up the tube so I decided to slow the feed to 2 hours to try and hold off any vomiting. It worked and by the next feed I was able to move him back to an hour. I basically have decided that the rate and volume don't mean a lot for him most of the time. If he can vomit 10 minutes into a 2 hour feed one time and not vomit at all over an hour feed, then his issues probably isn't just the rate/volume he is at. The second time he threw up today was when he was chomping on crackers and a piece made its way back farther into his mouth than he was comfortable with and he gagged on it and since it was right at the end of his feed, it brought up a little bit of formula. Other than his normal feeding struggles, he has been the happiest little dude ever. He is moving a lot and has even started to roll and wiggle(in very tiny movements) to get to a desired item(usually his pacifier). He is sitting up and then leaning way forward and sitting back up and is standing on his legs a whole lot more! I am hoping to hear pretty early in the morning about the DGE test so we can plan our day for Tuesday. I am hoping they can get him in and we can find out if this is something else he is going to be dealing with and get him started on helping that issue if he has it. We also will see Surgery on Tuesday but that should be a quick and easy check up! I will update again soon, likely once I have the results of the DGE test(if he gets to have it done)!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
Hospital Visiting Hours and Rules
9:00am-7:00pm 8:00pm-9:00pm Archives
May 2020
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