Last night was a good night for Mr. Kyler! Today was a good day as well! Jaida and Gunner spent some time with him this morning and then they headed home after lunch for Jaida to make it to her ball game this evening. Mike went back to watch her play and will be coming back here tonight. With Mike and the kids gone to Salina I have spent my afternoon with Kyler getting in lots of snuggle time! It was good to get that time with him, especially considering I barely managed to not bawl when Jaida and Gunner left today. As for Kyler's progress he has continued to do well with just the cpap, his heart rate has been lower today after getting a dose of lasix to help him drain fluid, and now he is only getting a basic fluid bag instead of the TPN since he is getting more breastmilk! After spitting up the feeding tube from his mouth, it was moved back through his nose. He now seems much more comfortable and can get out some sweet baby cries! It's funny how most mothers don't want their baby to cry but his cry is sweet music to my ears right now! Over dinner he got some new things in his crib. He got a fun new mobile and a rock and sway swing to hang out in! I finally managed to get a picture of his half smile. I sent it to Mike letting him know Kyler already smiles more for pictures than he does! I also got a picture that I think makes him look like a muscle man! Tomorrow we may get to have him wear some real clothes and he might even lose the PIC line as long as he handles the next increase of feedings well!
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Today has started out amazingly. Mike got the morning report and found out they decreased his oxygen numbers again. Took a blood gas which came back great after that change! He needed a couple shots of morphine over night but was also given some Tylenol. Next came the big thing for the day...they removed his vent tube!!! He is breathing on his own with a tube feeding air into his nose as a back up! We are so happy! He seems much more comfortable and he was wide awake the whole time I was holding him today! Holding him is so much easier also, we get to pick him up instead of two nurses having to position and tape him to us! This afternoon big brother and big sister are also going to get to hold him-they don't know it yet but I am sure they will be very excited! He can also cry out loud now since the big tube is gone! He still has the feeding tube which was moved to his mouth so the air tubes could go into his nose but it is much smaller than the vent tube! Kyler continues to amazing the doctors and us. I know his progress is all in God's hands and all of your prayers for our sweet warrior are working! 9:00 pm This afternoon we took a break from the hospital and took the kids to the Thomas the Train exhibit at Crown Center. They thought it was pretty neat. After doing that and eating we went back to see Kyler and the kids held him. Gunner went first and did a really god job holding him. Kyler was pretty content to sit with him! next was Jaida's turn. She held him for a long time and didn't want to put him down. While she held him she sang to him and rocked in the chair! After they were done Mike and I both took a turn hold him. He started getting mad so we started to get him put back in his crib where he could rest. It's a little scary when he get mad and worked up. His face turns beat red, he can now cry out loud, his heart rate jumps up, and his oxygen saturation drops. We are trying to limit how much we hold and mess with him so he can rest and continue to get stronger. It is really hard to see my seeet baby boy laying there and not just scoop him up to snuggle like I want to! Sometime this morning he got rid of another line into him. He was getting lipids via IV and they began weaning the amount as soon as he started getting breastmilk. Now he only is receiving TPN aka electrolytes and other nutrients via the IV, the feeding tube for breastmilk to go directly into his tummy, and the cpap oxygen hose! Slow and steady progress!! Today was an exciting but calm day for Kyler! When Mike went for his morning visit he found out that Kyler got 2 bolus of morphine during the night and they weaned some more oxygen. When the surgeon came in at 5:15 he said Kyler is doing good. His incisions look good and they will continue to weed of oxygen as he can handle it! Then came some news we weren't expecting, he could have his breathing tube taken out in the next day or so if he keeps going like he has been! This is amazing and nit only does it mean he is getting stronger it also means that we would be able to pick him up and hold him when we wanted to and wouldn't have to have 2 nurses position him and tape all his tubes down! When Grandma Jody and I got in to see him later in the morning we also found out they were planning to stop his morphine drip and only give him bolus' as needed(basically an injection). Before lunch it was gone and Kyler seemed to handle it well all day! His fever is gone, his heart rate is still a little high but they don't seem too concerned, and he was swaddled and comfortable all day today! The night nurses brought out the swaddle sack for him because he is quite the escape artist, wiggling his hands up trying to grab the breathing tube! After getting to meet cousin Britany and see Grandpa Bill and Grandma Doris again, Kyler got some rest and some quiet while we took Jaida & Gunner to a surprise restaurant. We drive out to Ledgends and are at T-Rex Cafe. They both were a little bit startled at the moving T-Rex right inside the door but it didn't take long for them to not be scared. Gunner especially was so intrigued by all of the moving dinosaurs and insects. It was like he had ants in his pants, turning every which way and standing up then sitting down just trying to take it all in! He kept saying how cool and amazing it was and then he tried convincing me that we had taken him there when he was a baby! After dinner we went back to the hospital and visited Kyler some more and Kyler had some more visitors. He slept through the whole visit and didn't even budge when I changed his diaper. There is a grammar meme floating around the internet talking about the importance of commas and that meme happened in real life for us! Jaida had made a comment about Kyler pooping a lot and Brandi said something along the lines of " that's what babies do, the eat, poop, and sleep". Jaida got a horrified look on her face and asked " they eat poop?!" It was hilarious, one nurse happened to be writing down Kyler's numbers and just started busting up with us. Then Gunner kept repeating it because he thought it was funny that she said "eat poop". There aren't many dull moments with those two around! Just for fun, here are a couple other funny things Gunner said tonight! He tripped walking down the hallway and gets up and says "good thing that ground was there to catch me!" Cue laughter and it being said at least his glass is half full. Then he throws out " I don't have glasses!" He sure cracks us up! One more exciting thing for Kyler today, got a music maker in his crib! It plays music and has pretty lights on it! Super exciting!
Today was a nice day and we pray that Kyler continues to make progress. Good night! Today was a calm day. Kyler's stats stayed the same with his heart rate being slightly elevated. There was a little while in the morning when Kyler was pretty upset and worked up. That was hard to see. To see him upset and not being able to just pick him up and snuggle him and make it better. I finally got to snuggle him this afternoon and loved every second of it. Jaida and Gunner made the trip here with Grandma Jody and are going to stay for a couple days! I have been missing my kisses and hugs. They came in talking 100 miles per hour about all the fun things they did at the lake this weekend with their cousins and the family. They also showered us with hugs and kisses. We are hoping to take them to see a Thomas the Train exhibit down at Crown Center while they are here. I have started feeling better. Today I made it almost all day without pain medicine and walking in general is more comfortable! We are hoping for another calm night for Mr. Kyler and looking forward to playing with Jaida and Gunner tomorrow!
Today started off smoothly with a calm night from Kyler and plans to increase his feeding amounts. I found a nice surprise sign in his room when I got there this morning. This sign was the result of a fun conversation we had with a couple of Kyler's nurses and a nurse who had taken care of me while I was admitted. We had chatted about Harry Potter and of course Mike voiced his dislike. I shared with them the clothes I made and Kyler got as a gift and my desire to go to The Wizarding World of Harry Potter in FL. Mike was not as amused by the sign as I was! I got to hold and snuggle him this morning and then Kyler had a visit from Grandpa Art, Aunt Kristi, and Cousin Coral. Next up was daddy's turn to hold him. While daddy was holding him, Kyler's heart rate began to rise and his temperature started risk as well. They got Kyler back into his bed and unswaddeled to see if he was just overheating from being wrapped up and held. We have been told it could be an infection with all
of the different lines in his body. Those lines give germs an extra entrance to get to him. It could also be withdrawal symptoms from coming off the morphine and stronger pain meds he has been on literally his whole life. They decided it was best to draw blood and get it tested for infection so they can get ahead of it before it gets worse, so right now we are waiting for the results of that test. Please pray that it is just part of withdrawal, an infection would be a step backwards in his amazing progress. 9:45pm Well today turned into a long and exhausting visit to the hospital. It's only 9:45 but it feels like 3am. Kyler's blood test came back negative for infection but his heart rate was still high and his CO2 monitor was reading high numbers as well. They took a blood gas and it came back within his normal range so we still aren't sure what caused the fever and increase. There is a chance that we caught the infection before it could reach his blood for testing but we don't know. He is stable and doing better with his temperature so we began to get him ready for bed. The nurse asked if I wanted to give his bath which of course I jumped at. His baths consist of special wipes that wipe down his body with. I finished his bath and changed his diaper. His nurse had asked to leave the diaper open so she could give him a suppository. I covered him up because you know baby boys and fresh air and just as she walked over with the suppository, he let loose! He soaked his diaper and the pads all down through to the mattress. Now we had to clean him back up and change out all of his bedding! Mike helped hold him up with the nurse and respitory therapist and I got to put his clean blankets under him. While Mike was holding him up in the air with one hand directly under his rush, we hear the suppository doing its job! It kept coming and coming and we were thinking the diaper wasn't going to hold! So we got him placed back down and it was time for yet another diaper change! Finally we got him clean, he stopped making messes, and we got him swaddled and tucked in for the night. So now we are finally back at the Ronald McDonald House and we are headed to bed as well! Good night and thank you all for the continued prayers! Another steady night for Kyler! They switched him from purple team(neonatal) to blue team(surgery) late last night so now his care will be managed by the surgery team with consultation with the neonatal care team. This morning at rounds they decided to wean his morphine down to .2 and wean his oxygen to 30. The weaning of the morphine means he can feel more things like the tube going down his throat. He can get a little upset(shocker) with feeling that and when he gets upset his heart rate jumps up pretty high(around 188 this morning). He can't cry but he makes the saddest face ever. It breaks my heart. He did get the line from his belly button removed this morning too! He is also getting an increase in his feeds today. They are watching to make sure his bowels are working and he is able to have a bowel movement with breastmilk. I got to hold him and he was wide awake. He is getting better with actually looking at things now that he isn't on so much medicine. We love our little warrior so much! 10:15 pm Slow and steady day for Kyler. He got some cuddle time with dad and then got the IV in his head removed! He wasn't too happy as the midline was removed because the tape was stuck to his hair pretty good. Now that it is out, he can wear hats instead of having them just sitting on top of his head. Kyler has lots of friends at the hospital! Many of his previous nurses and my nurses have stopped by to see him. Many of them are shocked at how well he is doing! All of your prayers are helping! We are just a couple hours away from it being 1 week since baby boy made his grand entrance. It is crazy to think a week has already come and gone and so much has happened. At rounds this morning there wasn't a lot to say or plan for. He did really well overnight and his stats stayed good. Today the plan is to put in a feeding tube, give him a small amount of expressed breastmilk, wean his oxygen support from 50 to 40 breaths per minute, lower his morphine drip so he can wake up a little more, and to make sure that a micro array for genetics is being done. By the time we went for lunch and ran a quick trip to the store, they had already placed his feeding line and given him some milk. The genetics testing has already been submitted and being run in the lab(they drew blood at birth for this). There isn't a lot known about the cause of CDH and they like to test genetics to be able to have data for possibly determining a cause or helping aid in research on the condition. Kyler is maintaining well and is currently getting held by dad. I am patiently waiting my turn, I let dad go first today since I was the first to hold him yesterday.
5:45 pm Today was a slow day which we are grateful for. We got to FaceTime with Jaida and Gunner and they were able to see Kyler and talk to him. Gunner made funny faces at him just like Jaida did to him when he was born! I think we are at a point right now where things are going to be slow moving. So much has happened so quickly with Kyler that we weren't expecting so now it feels like nothing is happening. Each day should consist of slowly weaning him off the supports they have in place and giving him time to get stronger. The highlight of our days right now is defiantly getting to hold him and love on him. It is great getting to have him in our arms versus leaning over a plastic shield to touch him or kiss him. Kyler did well overnight. His CO2 numbers increased slightly so the made a couple small changes on his settings. They did an X-ray and ultrasound but we haven't heard how those looked. Now that he is off ECMO and doing well his care is going to be managed by a resident team instead of the doctors we've seen before. During Mike's visit this morning the surgeon who did his hernia repair came in and said his incision was looking good. I am wearing a mask today due to developing a cough that is begining to produce mucus. It has been sunny and hot, then rainy and cold on top of the hospital being fairly cool. Hopefully it passes soon so I can lose the mask and feel better(coughing after a c-section is super painful)! We are waiting for the team to come in and do rounds and talk about the plan for Kyler today. Kyler got to put on socks today!
10:45 am Well Kyler is a little lower down the list so his team round didn't start until 10:15 instead of the 9:09 we were used to! There was a lot of technical talk involving his numbers and what they thought they needed to do next. They ended up deciding to lower the pressure of air going into his lungs because the X-ray showed they are hyper expanded. Lowering it does 2 things. First it lets his lungs move more and will hopefully help him get rid of the CO2 that isn't clearing out as well and secondly it helps protect his lungs from injury from pushing air into them so much. His tube has a pretty significant leak but the next size up is too large for him so they are keeping that in mind with his changes. His pulmonic hypertension isn't bad and they will continue to do X-rays to monitor his lungs and their inflation. He is not needing to have the head ultrasounds anymore and and at some point he will have an MRI done. Overall he is stable and doing as well as a baby with CDH could be doing! Thank you Lord! Big plans lay ahead for Kyler! One big thing is Mike and I will get to hold him today! Happy tears! I didn't think we would get to for a lot longer so this was unexpected! Secondly they plan to start feeding him breastmilk via a feeding tube tomorrow! This is a good step to be taking and we pray he handles it well. I have read that feeding can be an issue for babies with CDH so I pray things continue to go well for him! 3:30pm At 2:20 we finally got to hold our baby! It was a little bit of a process taking two nurses to position him and tape down all of his tubes but it was so worth it. I think I could hold him forever. I had my turn skin to skin with him and now dad is getting his time in. Kyler is sucking away on his breathing tube and everytime I try to get a video he stops. We are so happy! 9:30pm Kyler got moved back to the room he started in before all of his proceedures. They weighed him, first time since birth, and he is weighing 6 pounds 13 oz! He's a growing boy! Now that things are calming down some visitors are welcome but we ask that you please let us know ahead of time. We can only take 1 person back at a time and children aren't allowed(except for siblings)! There was some talk today about moving him to a different location that would be his place for the remainder of his time here so we will see when that is and where he will be at then! Good night all! Happy induction day! Today was the day Kyler was set to arrive before he decided things were happening when he wanted! Today is looking to be a big day for our little warrior. At rounds this morning the medical team reviewed his stats and what they were looking at. Kyler has been on ECMO for 3 days and he does have a blood clot in his arterial cannula. We had some confusion yesterday with the MLB Bronch procedure and our understanding of what that was for. That was to remove mucus inside his body but the clot is still there. Today they said the clot appears to be more adhered to the cannula tube. They did an X-ray very early this morning and when Mike got here around 5:30 am they were finishing up with the head ultrasound. The X-ray looked very good with aviation of the right lung and the left lung also. This means that Kyler is getting air into his lungs. They also did an oxygen challenge in which they turned up the oxygen on the ECMO machine and then tested Kyler's body to see how that oxygen was moving and he did excellent! The head ultrasound looked good as well. There was a spot that appeared to be extra fluid but there isn't any hemorrhaging! They are changing his ventilator settings to give him a challenge to do more of the work on his own. The doctor ordered an echocardiogram to be done today to see how his heart functions and the pressure he experiences with lower settings and less work done by the ECMO machine. If he preforms well during the echocardiogram and shows good fiction and the pressure is ok they may look at taking him off the ECMO today! This is a big step so lots of prayers are appreciated!! They feel like now is a great time to take him off if he can handle it due to the blood clot and how well he has done so far. They don't want to press their luck with the clot and have to have other problems. One doctor during rounds suggested trying a nitric trial if the function looks good but the pressure isn't the best.
Right now we are waiting for the echocardiogram to be done here around 10:30 am. The tech is currently doing pre-assessment pictures of his heart so they can compare them when they turn the machine down and do the other pictures. 2:30 pm The echocardiogram looked good. His function was good and his pressure has a couple concerns but they were able to address those concerns with the use of Nitric oxygen. The attending doctor said that they would next meet at a big team and really crunch his numbers and the information available and decided what would be the best course of action for Kyler. We left to get some lunch and rest in preparation for the rest of the day. As we were resting I got a call from the doctor we'd been seeing a lot of today and she said they were ready to take him of ECMO and that they wanted to start in about 30 minutes. We jumped around and headed back to the hospital. When we got here they had already begun opening stuff so we didn't get to see Kyler before hand and now we are waiting on one of surgeons to come talk to us. Pray, Pray, Pray his body responds in a positive way and that he continues to make good gains! Well as I finished typing up the procedure is already done! It went as smooth as possible and the cannulas were able to come right out with no back bleeding or other issues. They are finishing cleaning up the room and removing the giant machine! 10:00pm Kyler has been holding stable since coming off ECMO with a slight increase in his heart rate. There are no scheduled plans for the night other than continuing to monitor him. When we visited after dinner we got to FaceTime with Jaida and Gunner. They were excited to see him and both sang him a song. We miss them but are thankful for family who are taking care of them while we attend to Kyler. Good night and thank you all for the prayers. I have no doubt that your prayers are playing part into his recovery! 4:30
Mike went to visit Kyler. When he got there they were changing his breathing tube because it had come loose. Around 5:30 they did chest X-rays. Kyler was stable and looked good. 1:00 pm The rest of us got up and around after Mike got back and we got breakfast. Then we packed a bag to head back to see Kyler. I have been trying to figure out what to take with me now that it's a little more than just walking down the hallway to my room. After getting things I think I may need and my extra pumping equipment together, we headed out. We got there in time to hear the rounds exchange with the doctors. Kyler was doing well. They did see a blood clot on the arterior line going into him. It's close enough to his neck that they need to keep a very close eye on it and are treating it with medicine. If it had been farther away they could possibly change a circuit in the machine to take care of it. The doctors had the X-rays and we were able to look at them. The right lung was collapsed due to pulmonary hypertension and Kyler's body is taking a break since the ECMO is doing the work for him. The X-ray does show that Kyler has some left lung! This was great news since we were told after the MRI in March that they could tell if there was any at all. This means he may have a chance for that lung to grow since there is lung tissue but it will never be normal size. Today Kyler's belly is pretty swollen which is expected. His abdomen isn't used to being full of organs and they are swollen due to irritation from the surgery. He is on pain meds to help with discomfort but is doing some small movements. Jaida and Gunner got to visit him some more and give him kisses. They even sang to him. They are headed home today. So far I am handling it ok but we will see how I am feeling after they have been gone for a couple days. I am glad Mike gets to be here for a while still and we will have time to focus on Kyler while the other kids are able to have some fun. After sending them on their way we came back to the Ronald McDonald house to let me rest. I am having quite a bit of swelling in my feet and my pain meds make me very sleepy. Mike just ran out to the hospital to sign paper work for them to do a probe on the blood clot. I will update more later! 2:20pm The MLB Bronch (microlaryngoscopy with bronchoscopy) was the procedure Mike literally ran to the hospital to sign paperwork for. They just finished with it and what they thought was a blood clot was actually a bunch of mucus! Hooray! They were able to clear the block that the mucus made and now that it is clear they will re-inflate his lungs. They are hoping that getting the right lung inflated will help get the left lung inflated also. They have ordered an X-ray to be done in about an hour to give him lungs time to expand before the look at them! 8:00 Kyler has had a calm afternoon since his procedure! His X-ray looked good afterwards and the right lung has expanded back out. His ventilator is helping keep his lung inflated and is set to have him take 10 breaths a minute. He is attempting to take some of his own breaths and is ranging up to 40 breaths per minute! It fluctuates but is good to see him working on it! He got to hear Jaida read a book to him that we had recorded before heading this way. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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