Kasai’s Journey

Kasai’s Journey Welcome to Kasai’s Journey! Catch Updates here! Kasai was born at 24weeks 0days! Weighing 1lb 3oz. On January 1st,2024. He Spent 395 days in the NICU. Our fighter🩵💙

And has fought for his place here earth side every single day since he was born.

A few pictures of kasai from recently. He’s gone up on his seizure med just because we were seeing seizures still freque...
06/18/2026

A few pictures of kasai from recently. He’s gone up on his seizure med just because we were seeing seizures still frequently. He’s been more awake since he started the Valaproic acid but we’ve also been able to witness more seizures while he’s awake. We will going for a repeat EEG on the 24th! As well as getting labs to check on his liver function and a lab for endocrine. He’s had a back n forth sleep schedule with med changes and adjustments. Kasai has been doing really well other wise. He’s had his concentrator off for almost a whole month at this point. Just Vent settings! Not even needed to use tanks to travel to columbus ,outings or to visit grandparents. And that’s even with him being j***y bc of weather changes and allergies! So that is really good. We couldn’t be prouder of his progress over the last few months. He’s come a long way. Thank you all for the continued support, love and prayers! We will keep updating when we can! 🫶🏼

Some pictures of our Chunker Butt🫶🏼 Kasai’s been doing good,very sleepy the past few days. Still very active when he is ...
06/02/2026

Some pictures of our Chunker Butt🫶🏼

Kasai’s been doing good,very sleepy the past few days. Still very active when he is awake tho! We’re not sure if it’s teething,growing or allergies kicking his butt. Just monitoring closely. He has been j***y, we’ve been suctioning more frequently but he’s been satting amazing. His concentrator has been off since may 24th. So no extra oxygen for him, just vent settings. All in all he’s doing well. Just wanted to make a small update and share a few photos🫶🏼

Kasai had his first build a bear trip today! We of course got bluey and bingo stuffed! His papa came along and got him s...
05/26/2026

Kasai had his first build a bear trip today! We of course got bluey and bingo stuffed! His papa came along and got him socks as well! Now we just need muffin and winton😂. Kasai did really good,he was awake on and off. (as he always is in a new environment). We had a really good time walking around the mall and getting out of the house for a bit. His aunt Baylee and i got auntie anne’s cinnamon & sugar pretzels and a peach lemonade! Then Baylee wanted to push him around for a bit while papa and dad got a massage. Then we took some photo booth photos. All in all a really good morning for us,i’m glad we can enjoy these moments with him. ❤️

Kasai finished up his antibiotic for his ear infection wednesday. However we did reach out to pulmonary about his trach ...
05/23/2026

Kasai finished up his antibiotic for his ear infection wednesday. However we did reach out to pulmonary about his trach culture and decided to do a course of treatment for his extra secretions as well as treat some of his trach infections as the stuff he is colonized with had flared up a bit with the heat. So he started that thursday night and should be done with those by tuesday. His neurologist did call us and talk with us about his seizures and EEG. She is still seeing almost the same amount of seizures as well as we started seeing more of them while he’s awake so she did decide to go up on his valaproic acid again. We’re at 4mls and monitoring for the next two weeks have to call her and then if we are still seeing them may go up to 5mls. He will be getting repeat labs to check on his liver function in a month. As well as scheduling another EEG to determine what the next steps are if he’s still showing the same amount of seizures. We are getting more awake time with him since he switched from his old seizure med to this one,so we were very suprised to see the same amount of seizures but not to suprised as since he’s been awake we’ve been able to see them ourselves more. Before they were really hard to see or capture with his sleepy status. We will keep you all updated as always. Thank you all for the continued love,support and prayers!

Wanted to do a small update! Kasai has been home since Thursday evening! The antibiotic for his ear has really seemed to...
05/19/2026

Wanted to do a small update! Kasai has been home since Thursday evening! The antibiotic for his ear has really seemed to help him get back to his self. He did grow some stuff on his trach culture but pulmonary hasn’t reached out about it. We left them a message today and are waiting fo a call back. He has been satting well! And enjoying the air conditioning in this crazy weather! We got some smiles out of him today too! (isn’t he the cutest) We will let you all know if we hear anything else from his doctors but as of now we’ve seen he seems like he’s getting back to himself. We couldn’t be happier! Thank you all for the continued love,support and prayers!

So far everything is still normal or negative. However i did have them check out his ears last night as he had a pretty ...
05/14/2026

So far everything is still normal or negative. However i did have them check out his ears last night as he had a pretty good amount of drainage come out of right ear. They ended up saying he does in fact have an ear infection. There is to much drainage to determine if there is a perf or not so they put him on an antibiotic that treats it just in case. We will have a follow up with ENT. What sucks more is that he could’ve very well just had this the entire time and he couldn’t tell us. They also didn’t check his ears in the ER or when we switched to PICU. So i made sure they came to look at him. I myself struggle with constant ear infections with a perf in my right ear and it kicks my butt. I can only imagine how he’s feeling. I’m glad we were able to catch it and hopefully he feels better soon. We should get discharged later today if everything is still going well. They will call us if anything pops up on his cultures. For now we will keep him comfortable and treat the ear infection. We will also do some extra CPT at home as well as some saline nebulizer treatments to help break up secretions. His LTM showed similar results to the last one. The team wanted to stay course of treatment for now and let his Neurologist know and see where she wants to go from there. Thank you to everyone who has reached out and as always thank you all for the love,support and prayers!

Kasai is hooked up to LTM. He got a CT to check on his shunt which came back normal. They did a respiratory panel which ...
05/14/2026

Kasai is hooked up to LTM. He got a CT to check on his shunt which came back normal. They did a respiratory panel which came back negative. They also took a trach culture which we’ll have to wait on…also still waiting on the blood cultures. So far all his labs have looked normal. They gonna get a gas in the morning. They took another lab to check on his liver,which came back fine. However he has desated a few times in the last hour. One of em dropping down to 74 and his lips turning dusky. I was able to suction him and boost him on the vent to bring him back up. Didn’t last to long as he desated back down in the 80s. They bumped up his O2 and did some lung lavashes to help loosen up some secretions and bring them up. They’re going to start doing some saline treatments through the nebulizer to help with his secretions. He’s doing better as of now,but still concerned as he just started doing that and requiring more oxygen. So we are curious to see if the trach culture shows anything. Owen and I were able to get him washed up,new trach ties and new clothes before LTM was put on which made him feel better. We’re hoping to have more answers tomorrow. Thank you all for the continued love,support and prayers!❤️

We are admitted in the PICU. Still waiting on labs, xray report and all the good stuff. However we got moved at a crazy ...
05/13/2026

We are admitted in the PICU. Still waiting on labs, xray report and all the good stuff. However we got moved at a crazy time in the hospital as shift change is approaching. So it’s gonna be a lot of repeating ourselves and meeting with everyone to see what is going. Then hopefully me and owen can get some rest because we’ve been going non stop. We had our 2 hr car ride down here,got here at 7pm yesterday and we stayed in the ER until 6am today. So much has been going on,we’re glad they’re being cautious and hope to figure things out later today. Just wanted to update you all. Thank you all for the continued support,love and prayers!

They tried to get an IV placed as precaution but couldn’t get one to stick. Poor babe got poked at least 5 times today. ...
05/13/2026

They tried to get an IV placed as precaution but couldn’t get one to stick. Poor babe got poked at least 5 times today. They did get blood for his cultures and labs. Waiting to see if they want to get a trach culture. He just went down and got a shunt series of x-rays that neurology requested as a precaution. Still in the ER…We are going to be admitted just waiting to see what floor they’re placing us on and waiting for a room.

05/13/2026

Small update. We are still in the ER. Neurology came down to see us finally and after assessing him she is going to talk with her team and see what they want to do. She is also talking with the main ER team to possibly do an infectious work up just to make sure we aren’t missing anything. Hoping to hear back soon and hopefully figure out what we’re doing for the night.

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Columbus, OH

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