Time has flown by since Kyler's surgery and I am just realizing I haven't posted in a while. The days immediately following the surgery were pretty calm. Kyler began gagging a little bit which we knew was a possibility. The he began throwing up but it was clear and full of mucus. We figured it was drainage that he was having difficulty swallowing. It wasn't too concerning but it was hard to watch. Kyler was healing really well, you couldn't even tell he had just had surgery. He was having fun joining big sister and big brother in their shenanigans! Kyler had physical therapy just two days after we got home and did really well. He was working on weight bearing on his arms. He was really motivated by his pop up train. He loves pushing those animals back down! On Valentine's Day we learned that Kyler liked balloons and was interested enough to try to reach for them. Jaida got to go to a Daddy Daughter Dance. She was so excited to get all dressed up and she looked beautiful! On the 18th we celebrated little man turning 9 months old! He is still a very happy guy and is starting to give me kisses! He is sitting up really good and prefers to be in the sitting position, its better for watch Jaida and Gunner! He is just fascinated when watching his siblings play and they can get him giggling like nobody else can! He is also enjoying banging toys together, shutting his pop up train, and standing in his stand up player. He is also starting to wave, though most times its with both hands! At his 9 month check up, he was weighing 16 pounds 5 oz which puts him in the <3rd percentile. He was 27.8 inches tall which is 31st percentile and his head is 18.1 inches which is 69th percentile. Big head, little body. He is also working on two teeth coming through. It is amazing how out of everything he's been through, his teeth are always what bother him the most. In the last week Kyler started throwing up more than just clear mucus. At first it was just slightly cloudy with formula and as the week has gone on, it has gotten more milky and a lot more in volume. He is back at vomiting around the same volume his emesis were before the surgery except now it takes him a while instead of just getting it out(projectile). This has become increasingly more worrisome for us. We thought the fundo would stop the vomiting and it did for a while. We knew that he could still vomit but found it weird that he is vomiting more now than right after the surgery. Since this has been happening more and more, last night we sent a message to the surgery team. We explained what was happening and waited for a call. This morning I got a call from a nurse who got the message and she asked for a little more information. After filling in the gaps of information, the nurse sent the updated information to the surgery nurse practitioner and I also asked for her to send a copy to Kyler's Special Care Team. She told me to expect either a message back through the messenger or a call back later in the day. After a while I got the call back with some instructions. We were instructed to increase his feeding time to start with. Since we are already at an hour, we increased to an hour and half. We were also instructed to vent(burp) not only before a feed like we have been doing, but to stop to vent at half way and then again at the end of the feed. I called the home health nurse and asked her to do that for the next feeding. Now we are just waiting to see what works and if the slowed down feed will be enough. I had also asked about the g-tube size because when they had Kyler on the GJ, it was a 14 french(diameter of the "straw" part of the button) and the one he has now is a 12 french. Since the GJ was larger, it stretched his stoma(hole) out and now his current one is smaller than the opening. This is allowing formula and stomach acid to seep out, especially when he is vomiting and having a lot of pressure in his tummy. They aren't concerned about it yet and think it should shrink back down with more time. For now we are just having to be extra careful about keeping his g-tube site clean so that the acid doesn't start breaking down his skin by his button and causing other issues. So far since making the feeding time change, Kyler has not vomited! Kyler has not been interested in trying anything orally so we haven't really made any progress on that front. I even tried to give him DQ ice cream cake and he wouldn't even open his mouth. He tends to do better with foods he can hold and I have recently gotten a Splat Mat so that he can explore with some food without me worrying about the food getting all over our white carpet. We also will be having him try sitting in his high chair away from the table and just playing sitting in it. We are doing this to get him comfortable. We are really just trying anything to see if we can make progress with oral inputs. He has had a few times where he will open for a clean spoon but the second food goes on it he will not open his mouth at all. It is pretty discouraging for me to see him not even open for food. I have a easier time not getting frustrated with him eating because he doesn't know how over not even getting him to try since he won't open his mouth. I learned about a neat thing called video modeling at a training I went to for work a wile back and in the training they talked about using video modeling to get kids to eat new foods. They talked about babies of 8 and 9 months being able to watch videos and it got me thinking about trying some video modeling with Kyler. I don't think I am quite ready to do it just yet but it is something I am keeping in mind to see if it helps Kyler gain new skills. This week Kyler has gained a new skill. He is now covering his own head with a blanket and pulling it off to play peek-a-boo. If only he would start saying peek-a-boo! He also started bearing some weight on his legs and with support he was standing up pretty straight! He has also learned how to nod yes but he still prefers to shake his head no! Tomorrow we will get to celebrate Jaida's 7th birthday. I can believe she is 7 years old already. She is a great helper and she loves her brothers so much! Next week we go to KC for a check up with Surgery where they will check on Kyler's incisions. I think they look good so I expect that appointment to go well with no surprises! Then we are set to go back for a GI appointment and hearing test over Spring Break. As long as Kyler's vomiting is under control, then those will be our only appointments until the end of April when we got back for his Special Care Team check up. Thank you all for the thoughts and prayers for our little warrior!
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Wow, tired doesn't even begin to explain how I feel. Around 7 pm on Thursday Mike took our things and got checked in at the Ronald McDonald House and then came back up to the NICU. He got some pretty inquisitive looks from the front desk ladies. They were curious why we were back! I spent the time holding Kyler and rocking him. He fussed only a little bit before settling into my chest for snuggles. His oxygen sats were looking good but his respiration rate and heart rate were both pretty high. We got the okay to start feeds once his bowel sounds were good and he seemed alert and hungry. I told the nurse that we really just needed to go on bowel sounds because he doesn't really present hunger cues at this point. Once those were moving we started waiting on supplies. I kicked Mike out to go get some sleep and finally around 10 we got the formula and supplies to do his first feeding. We had plans to go back to bolus feedings(set times) so that Kyler wasn't hooked up all day long. We talked to a nurse practitioner who said we should do a half feed for a couple of times since he had be on continuous for the last couple of weeks. So at 10pm he got 70mL over an hour. For the first feed I put him back in the crib to see how he handled the feeding for the first time. He did pretty well with it but did do some gagging and spit up some clear mucusy gunk. He ended up falling asleep so I got comfortable in the recliner and continued watching the Olympic Figure Skating on my computer. I was able to get some sleep in the recliner and Kyler had a good night. Around 11 he woke up and was ready to play. Luckily there were some toys for him and it didn't take him too long to go back to sleep. During the midnight hours he got the second half feed and then around 5 am he got his first full feed(140mL over an hour) with his meds. Kyler was pretty content in the crib and then around 6:30am the surgeon fellow and nurse practitioner came for morning rounds. They told us that they were either moving Kyler to the regular floor or sending him home. His oxygen was back down to normal levels and his respiration rate was lower as well. At that time his heart rate was still a little high though. We were pretty surprised to hear that. Mike went in search of some breakfast and when he got back I decided to go to the house to shower and get a couple solid hours of sleep in since nothing moves too fast while impenitent. If we got moved to the floor, we wouldn't get much rest because we would do most everything instead of the nurses doing a lot of it. I stopped by the cafe and grabbed a breakfast sandwich and coffee. I got over the house and set my coffee on the table. I didn't want to drink it before trying to sleep and figured it would be cool when I woke up and I could drink it like iced coffee. I laid down and had fallen asleep for about 30 minutes when Mike called. The doctors came around and were sending us home, like soon. So I jumped in the shower and changed real quick and headed back to the hospital. On my way out I let the front desk know they were sending Kyler home so we would be checking out after we got him discharged from the hospital. The ladies asked if I had gotten any sleep and I told them a little. I had my still warm coffee in hand and made my way back to his bed space. By the time I got there, the discharge planner, Anna, had already been by and the orders were in. Turns out they move a lot faster after your first discharge! Kyler was sitting up and looking around and then we packed up the few things we had out and got Kyler's going home outfit out. While waiting we got a visit from Kathryn the NICU social worker who we worked with before and a few other nurses who came over to see him. I asked Kathryn if she wanted to hold him and of course she did. Some of those ladies work around those babies all day and rarely get the chance to hold them. After she was done, Anna was back and she also took a turn holding him. We then had to wait on our nurse to come over so that I could take all of the leads and monitors off of him to change his outfit. It wasn't long and we were walked out to the elevators. This time they didn't have to walk us all the way to the car! While we were up there and it was a work day, we decided to make a quick stop at the fetal health center to see if Dana and the others who were our team prenatally were there to visit with. We ended up getting to see Dana, Dr. Bennett(the OB we liked the best) and Alicia(the ultrasound tech we had a few times). Kyler let them each hold him for a bit and we were asked to come back and visit when we are back up again. Alicia was heading out for lunch and she carried Kyler down to the ground floor before we went our separate ways. Mike went to bring the van up and I took Kyler to the pharmacy to pick up the pain meds they had prescribed for him. We ended up not getting them because they hadn't send the prescription to them and we would have had to wait a while for them to fill it so we took them and headed home. Once we got Kyler in the car and hooked back up to oxygen we were on our way. I was feeling pretty weak and exhausted so I was thankful Mike was driving. We grabbed a bite to eat from drive through. That made me feel a little better but sleep was what I needed. When we got home Kyler was immediately entertained by some bongos his Grandma Jody brought him and he had a little jam session with his siblings. He was really doing pretty well with pain and was rolling and playing without much discomfort. We ended up inviting my grandparents over for dinner with my mom and my uncle Billy had come over. This allowed us to eat together without having to leave one of us home with Kyler while the rest went out to eat. Kyler enjoyed seeing everyone and was pretty happy. I noticed that when we were holding him, his heart rate would be a little higher than when he was laying down flat so I think that it was a little more painful for him to be held. He did end up vomiting after one of his feedings but it wasn't very much. I was glad to see that he could still vomit if he really needed to. There was the chance that it wouldn't let him vomit at all which could make it a little rough on him. We got settled in for bed and we all slept hard! At 6:30 am this morning Kyler woke me up and was gagging after having finished his feeding. He got through it fairly quickly and was able to go back to sleep for a while. Today he has done really well. He needed oxygen on for a while in the morning but around mid day he was able to take off the oxygen and was sating at 100%. His heart rate has been lower today but still a little higher than normal. I have been alternating Tylenol and Ibuprofen instead of filling the prescription for Oxycodon he was given and that has been plenty for him. He spent some time sitting up and playing the "drums" with his brother and sister while they were doing a concert! He is just amazing. I am surprised that they sent us some so soon when we were initially told 2-3 days for a stay and they sent him home before a full 24 hours and before he even had a bowel movement. He has had two since being home and they were pretty large and gooey. I was worried that it would be hard or painful for him since he has incisions and stitches in his private area but he didn't seem to be bothered by it. I have had to be careful to get it clean without rubbing his stitches too hard. He has gagged a few times after feeds and thrown up one more time. I am thinking his stomach isn't stretched back out yet from being on continuous feeds. We have spent most of the day lounging around and staying out of the cold. Kyler will have to go back to KC in 2-4 weeks for a check up with the surgeon to check his incisions and see how he is doing. I think we will be taking him in for a weight check in a week or so just to see if he has started putting on some more weight now that he won't be throwing up so much. Thank you all for your thoughts and prayers for our little warrior! He is such a rockstar and continues to amaze us(and the doctors)! We had plans to head to KC last night to stay at the Ronald McDonald House so we weren't having to drive early in the morning but that didn't work out due to them not having any rooms available. That meant we were planning to leave by 5am. We had read about construction and in thinking about morning work traffic, we wanted to make sure we had plenty of time. We arrived around 7:30 and grabbed a bite to eat before heading to the hospital. Luckily we had allowed plenty of time because when we arrived and checked in to get Kyler's labs drawn, they didn't have an order in for it. First the receptionist made multiple phone calls trying to find the orders and after about 45 minutes I called the number I had been given and they were able to get the orders sent over within minutes. Kyler got his blood taken and we headed up to check in at Same Day Surgery. We were about 30 minutes early for check in so we just spent some time waiting for him to be called. They called him back pretty close to his scheduled time. Once we were back in the exam room, they took his vitals and reviewed his blood work. He looked good but his blood sugars were a little low(55). They decided to check them again with a heel prick. This time they had dropped to 36. This was a little concerning but he was alert and looking good. They talked it over with a large team of people and decided to get an IV started with some sugar water to get his sugars back up. The anesthesiologist came in to do that part. She gave it 3 attempts before calling for the doppler machine to find his veins. It wasn't too long and that doctor came in and he attempted 3 times with no successes. Kyler was screaming and the poor baby is now covered in bright neon colored bandaids on all of his extremities. They were not able to get one in him so they called it quits and would put one in while is asleep under the anesthesiology. In the midst of all of those attempts we were waiting and told that he was scheduled to be taken into the OR around 11:45 and at the time they seemed to be on schedule. The surgeon Dr. Snyder came in and explained all of the procedures and reviewed the risks. After he was done the nurses shared with us that they had planned on him staying in the PICU but due to space issues they will be sending him back to the NICU for his stay. This presents us with an unforeseen problem. After they had told us they didn't have a room for us to stay last night, I told them to take us off the list because we would be staying in his room like we have for the last couple of stays. Well now that they are putting him in the NICU, there isn't a place for us to stay with him. Currently we don't know if they will have a room for us to get into tonight and I am really stressing about the thought of not staying with him overnight. Leading up to today Kyler had started not tolerating the continuous feeds as well. He was puking more but the volume wasn't as much. The puking episodes were harder on him as well. Previously he would projectile vomit and it would last around 5 seconds. Now when he is puking it is a slow drip and lasts around a minute. On a positive note he did taste some Oreo cookies and seemed to like those(he is definitely my kid!). While he was giving those a try his siblings were entertaining him and he was laughing the cutest baby laugh! In the days leading up to today we had multiple phone calls and communication about this surgery. The first was alarming. I was at a conference in Wichita with a team from work and got an email saying the surgery nurse practitioner had gotten a message that one of us was sick and we wanted to postpone the surgery. I was in a slight panic worrying that they had taken him off the list and we were not wanting to move the surgery date. I emailed her back and let her know we weren't sick and they must have gotten us mixed up with another family and we were still planning on the 8th. A couple hours later I got a response and they still had him on the list and he was good to go. The next phone calls I got were for the pre-op stuff. Reviewing medical history, answering questions, giving instructions, etc. During one of those calls I was told this surgery would be around 4.5 hours from the time they take him from us to when we get him back. The surgeon said 2-4 hours but I bet he isn't counting the putting to sleep and wake up times. 12:20pm Kyler was asleep(from being so worn out from the IV experience) and they wheeled him back to the OR. 12:55pm They started operating on Kyler. We are waiting in the Ronald McDonald Room on the for the surgery to be completed. We just got a call from the OR. They let us know they got started and they were able to get an IV in on the first stick without the use of the ultrasound machine. When we were told we had a phone call, I assumed they already found out they had to do the open procedure but luckily that wasn't the case(as of now anyways). They also told us they will call with updates every 90 minutes. I will post updates as needed. Based off the pre mentioned time frames, he won't be done until 3-5pm. 2:45 Update At 2:20 we got a call saying they were done with the Funds and they were able to complete it laparoscopically! They were still finishing up with bringing down a testicle. 2:40 Dr. Snyder came in and gave us a summary. Kyler did well and they expect him to be in recovery for 45 minutes to an hour. The fundo went well. Kyler did have some scare tissue but it was actually holding things out of the way. The surgeon did a Fowler-Stephens Orchiopexy to bring down Kyler's right testicle. Kyler's testicles were both high up in his body near his kidneys and in order to bring one down they had to cut some blood vessels to allow the testicle to be able to be pulled down into the scrotum. Not only were they very high/deep in his body, he told us that his testicles are abnormal shape and are stretched oblong in shape instead of the more typical round shape. He will have to have surgery in 6 months to bring the left testicle down. 6:30 pm Update It was around 3:45 and we got a call into the Ronald McDonald room from the nurses who were in charge of Kyler post surgery. They had him in recovery but it was going to be a little bit longer due to him needing more oxygen and his respiratory rate was 96-98(very high). They were keeping him in recovery to monitor him just a bit longer but said he would be out to us soon. About 30 minutes later they called for us to meet them. Kyler was awake but pretty groggy and uncomfortable looking. They told us they were for sure sending him up to the NICU because the PICU was full and the regular floor rooms didn't have the level of support/monitoring they wanted him on. So we took an elevator up to the 3rd floor and were wheeled into the headspace F54. It is just around the corner from the spot he was in after getting off ECMO. When we got into his space there were about 8 people fussing over him and we got to see a few familiar faces. One was Michelle, the nurse practitioner who was on his team his first stay in the NICU and the other was the Surgeon fellow Rich. After they all were done I did some investigating to see his new wounds. He has 5 incisions from the laparoscopic tools and his belly button was opened up to use as well. He also has an site of stitches on his right scrotum. He currently still has orange streaks on him from the surgery and I am not sure when he will be able to have a bath. I think he will have to wait until the stitches come out for a full tube bath but I am hoping he can have a wipe bath soon so that I can get some warm jammies on him and make him feel a little more comfortable. It is amazing sitting here how the smells and sounds of this place are permanently stored in my brain. We have been home for 6 months and sitting here feels like Deja Vu. We got a tentative plan for him in regards to his feedings which is going to be starting him on feeds once his bowels wake back up. We are going to try to go back to bolus feeds now since he was only on the continuous to try to limit his vomiting and now that shouldn't be a problem. I am really anxious to see how his body reacts to the Fundo. I am curious to see if it goes amazing or if it makes him do a lot of gagging and retching. After the big crowd left and we got things settled down a bit I was able to hold him. He seemed pretty uncomfortable being picked up but once he got snuggled on my chest he got in some good sleep. He is now resting calmly with a respiratory rate of 35-45. On the sleeping situation. We were able to get back on the list to get a room at Ronald McDonald House and they ended up getting a room for us. I do not want to leave him here without Mike or I, especially since he hasn't fully woken up yet and I don't want him wake up and us not be here. So for tonight Mike is going to get some good sleep at the RMH(especially since he woke up a lot earlier than me and I got to sleep some on the drive here). Then in the morning once the doctors have made their rounds, I will trade off with Mike and go to the house to shower and get a couple solid hours in. Luckily the recliners on this pod are the more comfortable of the two kinds they have in the NICU and I came prepared with pillows and a blanket so I should be able to get some sleep bedside as well. We are now just letting Kyler rest and waiting for him to wake up and be a little more alert. It has officially been a year since I went in for an ultrasound and left having my world rocked. This past year has been the hardest year I have ever experienced but I am thankful for how we have been blessed on this journey. During this past year I have become closer to God, stronger than I ever thought I could be, and more thankful than I have ever been. At this time last year I was filled to the brim with disbelief, worry, fear, sadness, anger, and some emotions that you can't put words to. Today I am filled with faith, hope, love, amazement, and pride. With each day that passes, I am continuously amazed at our little warrior and all of the obstacles he encounters and then conquers. As I have been reflecting on the past year, I keep playing a chorus in my head that I feel like describes our life now more than ever. It is a song by John Michael Montgomery called Life's A Dance: Life's a dance, you learn as you go. Sometimes you lead, sometimes you follow. Don't worry 'bout what you don't know, life's a dance, you learn as you go. I have learned more medical lingo and information on the fly than I could ever have imagined. We are always in a battle of trying to lead Kyler one a certain path just to have him tell us to follow him. We have learned(and are still learning) to let go of what we can't control and to give our worries to God. We have also done this medical life dance of some steps forward and some steps back in which can be a long way to the end point but the journey ends up beautiful. Kyler is one week out from his surgery. I am starting to get anxious for it. I know that it is our next best option to try for him but the surgery process is never without risks. I did some research on the procedure he is going to have done(the fundo) and was able to find some videos that show what the procedure will involve. Best case for Kyler is they are able to do it laparoscopically, which will require about 5 incisions(10mm long) to do the procedure for the fundo. If they get in with the camera and find too much scar tissue from his previous surgeries, they will have to do an open fundoplication which will require a large incision somewhere on his chest/tummy area. Likely these incisions will limit his movements for a while until the incisions heal and the muscles that are cut are able to heal as well. I think this will delay his progress his has been making with physical therapy. Sometimes I feel like this kid can't catch a break but I am pretty sure that I am more bothered by these things than he is. He is such an amazing baby and just rolls with the punches and you would never guess by watching him that he has been through so much already. As we anxiously await the upcoming surgery please pray for Kyler to have a smooth and easy procedure and please pray for him to have a speedy and comfortable recovery. I am praying that this surgery will get him on the right track for growth, comfort, and progress in all of his areas.
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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