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.

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.

Kasai has been having a rough few days. He’s been very out of it since coming off the other seizure med. We called his N...
05/13/2026

Kasai has been having a rough few days. He’s been very out of it since coming off the other seizure med. We called his Nuerologist and explained how he’s been acting and she told us to bring him to ER in columbus and we will go from there. We got here at 7pm. She wants to make sure he’s not having increased Seziures. We are waiting in a room now. Hopefully we will get some answers. We will keep you all updated.

May 7th, Kasai did his Sweat Chloride Test today and unfortunately he wasn’t able to make enough sweat for the test. So ...
05/07/2026

May 7th, Kasai did his Sweat Chloride Test today and unfortunately he wasn’t able to make enough sweat for the test. So we are waiting to hear back from his doctor about if she wants to try again or not. Then we got home,he took a fat nap. He just got a bath and his grandparents did a trach change and trach ties and now he’s watching his show all clean. Thank you all for the continued love,support and prayers!

May 5th, Kasai got some labs today and we picked up his Stroller Wheelchair. He got his TSH and T4 tests for Endocrinolo...
05/05/2026

May 5th, Kasai got some labs today and we picked up his Stroller Wheelchair. He got his TSH and T4 tests for Endocrinology. Those were just checking on his function. She noted that his thyroid hormone (T4) is normal but the signal from his brain (TSH) is a little low. So she wants to repeat those labs in 1-2 months. Complex Care wanted to review his Vitamin D and that level was in normal range. His Pulmonologist ordered Electrolytes and Blood Gas. His Electrolytes showed…his sodium, potassium and chloride were in normal range but his carbon monoxide was low. His Blood Gases showed…PCO2 and PO2 were normal and his PH,TCO2 and HC03 were a little low. We are waiting for them to send a message,not or call us about those. Then he got his Neurology labs. ALT,AST (to check on his liver) were normal. Valproic Acid was normal. She also requested a regular labs to check his white blood cells and red blood cells and all that. His White blood cells were fine. His Red blood cells, hemoglobin, hematocrit, eosinophils and absolute eosinophils are all on the higher side. So we are waiting on a message,note or call about that as well. He is doing good on his vent settings and his concentrator has been off for a few days and he traveled to columbus and back home with 3 tanks in the car and used not one bit of any of them! We go back down to columbus on the 7th for his Sweat Chloride test. And then he has his follow up EEG on the 26th!! He will also officially be off his old seizure med this sunday! We are hoping this EEG shows better results than the last one. And we are excited to start using his wheelchair stroller! Thank you all for the continued love, support and prayers.

Pictures of him in his stroller wheelchair, the chair itself and how it can face us!❤️

April 28th, We went to columbus today for a Physical Medicine appointment. Just checking him out and she said he’s doing...
04/28/2026

April 28th, We went to columbus today for a Physical Medicine appointment. Just checking him out and she said he’s doing really well and that she’s excited to see what him in his stroller wheelchair next time! She’ll see us back in 6 months to see how he’s doing. We also got trach culture results back and he grew the things he always does just at less then usual and he also grew that CF bacteria again. They haven’t called us to discuss anything yet but he is scheduled to get that CF test on the 7th of may! So we’re curious to see how all of his labs go. We will be getting his wheel chair stroller next tuesday!!! We are so excited for him! One equipment piece at a time helping him grow and go!! He is also set to get his 24hr repeat EEG on may 26th! So we will see how that goes! As always,Thank you all for the continued love, support and prayers!

April 20th, The appointment today went pretty well. They are all very pleased with how he is doing! Pulmonary wants to t...
04/20/2026

April 20th, The appointment today went pretty well. They are all very pleased with how he is doing! Pulmonary wants to take him off his sick settings and wean him back to his normal settings now that we’re in the clear. His pulmonologist also recommended us decreasing the amount of water in his balloon that is cuffing his trach,as long as the vent doesn’t alarm. Which will hopefully allow him to try and push more to make noises. They also took a trach culture today to see what he grows when he’s not sick. Just to check on his trach. They also ordered labs,mainly standard labs…like blood gasses,electrolytes and vitamin levels. We will get those when we go to get his labs for this new medication from neurology so he’s not getting poked so much. However his pulmonologist also ordered a sweat chloride lab,which has to be scheduled. This lab is just precautionary as Kasai has grown a bacteria in the past that is on the rarer side to grow unless you have CF (Cystic Fibrosis). She doesn’t think he has CF,as it’s standard testing when a baby is born and he didn’t have that marker then. But with him being premature and having other lung diseases they want to just make sure again. All in all,every team seems to be think Kasai is in a really good spot besides the seizure stand point which we are actively working on. We’re excited to start the wean process again and get him off these sick settings. We will let you all know about labs when we get them,as well as his culture. As always,Thank you all for your continued love, support and prayers.

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Columbus, OH

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