Kasai’s Journey (2025)

05/07/2025

June 5th,I wanna start off with saying happy late 4th to everybody!! Also,Kasai did get put back in hydrocortisone yesterday at 5AM and we meet with Endocrinology monday to discuss what we’re going to do. He has had some pretty good awake periods between yesterday and today. Kasai got to watch fireworks for the first time yesterday!! (we had noise cancellation ear plugs in) He did amazing and seemed to like em’! It was a great feeling to have him home for this year’s 4th,as we missed out on holidays in the hospital last year. We’re counting these as our firsts and taking in every moment! We also took him outside today for some pool fun for the 1st time!! He seemed to like the water and was awake for a good portion of the time before taking a nap and then coming inside for a nice bath! We’re so grateful to share these experiences with you all! I hope you all had a great 4th and thank you for the continued support,love and prayers❤️

27/06/2025

June 27th,So Endocrinolgy reached out to us about Kasai’s ACHT STIM test Results. Let’s just say we’re not happy at all. He failed his test,lower score then what he had last time. But that’s not the part we’re upset about. The practitioner that called us to discuss these results told us to keep Kasai’s stress dose on for when he’s sick or in pain. She then follows up that statement with “if he’s experiencing more sleepiness, where he cant participate in daily activites or isn’t acting himself we would talk about putting him back on a normal every day dose”. Mind you back in march when i (mom) was calling every week that we weaned and was telling our Endocrinologist about my concerns (which is the sleepiness and etc.) She told me that wasn’t something to worry about. We then ended up in the hospital in april. We had an inpatient Endocrinologist tell us the same thing our Endocrinologist told us…So when it came to weaning him again we tried to see it through so that we could STIM test and see where his Cortisol levels are at. They were SO focused on “Kasai was so close to passing last time” that they didn’t even think about eveything else that’s gone on since then. He has seizures that stress and tire his body out. He’s been weaning his vent settings,making him work harder. He’s travels. He does OT & PT once a week. We work with him everyday. He has so much extra stress going on and he can’t even handle the stress on a regular basis let alone add all that. ONTOP of me going back through ALL of his test results and knowing for a damn fact that he wasn’t off hydrocortisone for a whole month before they tested him and that he still had in his system bc he had his ostomy out still. And he had a surgery 2 days after they tested him too. He was maybe only off it for tops a week and half 2 weeks before they tested him. And they’ve told us repeatedly that he needs to have it out of his system for a month for accurate results. Minus a stress dose. So they were supposed to call me back yesterday and schedule and appointment to go in so we could voice our concerns and they never called me back. I called them back today and we will be seeing Endocrinology again July 7th. Because we are dealing with the same issues we had back in march and it’s completely unfair to Kasai. Especially when they have access to his chart and seen him right after we got out of the hospital in april. They should have taken everything into consideration. Instead they were to confident and to focused on him passing this test.

25/06/2025

June 25th,Kasai had his ENT & Pulmonary appointment today! ENT said everything is looking great and that we’re taking great care of kasai trach/stoma site. They will see him back in december for another bronchoscopy,until then we’ll be seeing the trach/vent clinic. His pulmonary appointment was great,she said she wants to continue to wean him as he’s made great progress. He’s at 3 liters of oxygen right now and she said we can wean him ourselves at home as tolerated. So we plan to wean him to 2 liters this weekend and we will see how he does an go from there! She’s very confident that he can get off oxygen and be on just the vent! We’re also gonna slowly be weaning his vent settings again to! He’s 4 numbers away from being able to wean both numbers at the same time on the vent and she thinks we can do that in the next 3 months! We will have a video appointment in 3 months to see the progress and we will meet with her again in the new year for a check up! We are so proud of the strides he has been making and couldn’t be happier. Thank you all for your continued support,love and prayers!

24/06/2025

June 24th, We made it to columbus last night for appointments the next two days! Today we woke up at 7:30AM to start our day and will end appointments around 4pm. We started with our first appointment being at the Infusion Clinic to do Kasai’s STIM test (to check his cortisol levels). They had to place an IV and draw blood to start,then they gave him a med called cosyntropin to induce stress in the body and drew blood again at 30 mins,10 mins and 15 mins. They sent those to the lab and we will get the results back within a week or so. We then went to our next appointment,which was to get an MRI to check on the shunt. He did great in the MRI,even took a little nap while waiting on a RT to come down and help. We then followed up with Neurosurgery right after the MRI. His Neurosurgeon was very pleased to tell us that his shunt looks good and that his MRI is still stable! He would like to follow up in 6 months to do a limited MRI and we’ll see a practitioner as he feels the shunt is in a good place. Just to bring Kasai to the ED if we have any concerns with his behavior or shunt. We finished up our appointments for the day with Early development. This was our first time meeting with them and our first appointment. They pretty much just help make sure we’re getting everything we need through PT,OT and Help Me Grow…and that if we need anything else they can help with that. They were also talking about a type of binder to help with posture and sitting up. They’re thinking that along with hand splints and leg braces he’s getting will help him gain some strength and tolerance. We will be meeting with Pulmonary and ENT tomorrow. Thank you for all the continued support,prayers and love.

18/06/2025

June 18th,Kasai’s procedures went well!! We arrived for pre-op at 7:30 and got to gown him up and prepare him to go to the OR. He went down for his procedure around 9:40am! ENT started with the Bronchoscopy (to look at his trachea). They came out around 10:05 and showed us imaging and want to repeat another bronchoscopy in 6 months to check on the granulation tissue. The Urologist started his portion around 11 after preparing for their portion. They then came out to talk to us about how that went. He had two incisions made,the one on the right to drain and remove the accses fluid along with pulling his testicle down and stitching up (with dissolvable stitches) the inside to make sure it’s closed properly to not allow fluid in. And then the left side they went in and got a better look at the left testicle,which happened to be smaller and higher up then they thought and looked bad. Instead of pulling it down and waiting for it to cause problems in the future his surgeon opted to remove it so that it didn’t have any issues in the future if it turned necrotic or got a tumor. All in all Kasai handled everything so well and will be resting up with us tonight and we will be home again tomorrow. He’s not aloud to do anything crazy for the next two weeks while he’s recovering. So we will be lounging and resting! Thank you all for the continued support,love and prayers!

17/06/2025

June 17th,We made it to columbus!!! Kasai’s procedures are scheduled for 9am tomorrow as long as pre-op checks look good! He did great on the car ride down and we’re hoping all goes well tomorrow!

08/06/2025

A video of him smirking and smiling a bit!! We were pretending to swim and he loves it! 🥹🩵

08/06/2025

June 8th,A few pictures of Kasai from recently!! We’ve had the pleasure of getting back into PT and OT over the last month as well as getting some outside time and some better awake periods!! And we’ve tried a schedule with Kasai but realized it’s just not going to work. He sleeps when he wants to sleep and when he’s awake we get him moving. Whether it’s in his chair with some hanging toys,on his belly with a water mat in front of him,stretches or getting him on his sides…We take every awake moment and try to get the most out of it. Overall Kasai has been handling things well! We’ve been hydrocortisone free since May 24th!! This is the first time he’s been off it!! We stim test June 24th to see how is cortisol level is doing. We also have a big couple weeks ahead of us as we will be getting fitted for hand splints this thursday,monthly trach change on monday and a bunch of appointments the week after this one. Kasai will be having 2 procedures done on the 18th of this month…A bronchoscopy (to look at his trachea and see if we need a different size trach) followed by a Hydrocele procedure (which is to remove fluid from around his testicles). He may spend the night and then we will back home the next day. However we will have to go back to columbus for appointment the week after that as well. With us having a pretty busy month i just wanted to give you guys a quick update on how things have been and what we have to look forward too. Thank you all for the continued love,support and prayers!

13/05/2025

May 13th, Kasai had a columbus trip for two appointments today. We met with Endocrinology and Complex Care! Endocrine would like to continue to wean his steroid and stim test him in june to see if he still needs it or not. Complex Care met with us for a follow up on how he’s doing since he’s been home again and decided to get some routine labs as well as check his respiratory status. We won’t have those results until later. During his visit with complex care we also met with his dietitian as Kasai is now 29.5 lbs! And we have decided to take away his 1am feed as well as switch to a pediatric formula with a calorie cut instead of infant formula. We’re hoping this helps level him back out with his weight curve. As of now Kasai looks great and they will see us for a follow in a couple of months! We also took Kasai on a walk in between appointments today as it was nice outside today! Thank you all for the continued love,support and prayers!!

29/04/2025

April 29th,Kasai did get discharged yesterday!! And we made it home safely,he is doing pretty well settling back in. He was surprisingly awake the entire car ride! He has to follow up with almost every doctor but so far everything is looking good! We had a pediatric appointment tomorrow and go back to columbus on may 13th to see complex care and Endocrinology!! Our boy is home! Thank you all for the continued love,support and prayers as you guys help us get through some of the toughest times! We will keep updates going!🩵🩵

23/04/2025

April 23rd, We had our care conference today after having it pushed back twice due to us switching back to ICU service for 2 days and then switching back to the primary care team on the pulm floor. However Kasai has shown improvements and is basically getting sign offs from each team. Neurology would like to repeat a EEG tomorrow just to get a look at how the increased keppra has helped and to see if there are any changes. They are also choosing to stop his steriods and defer to Endo about putting him back on Hydrocortisone and make a wean plan from there. Endocrinology will be coming up with a wean plan and following closely outpatient. Nephrology took off the extra fluids and just want to monitor his BP. They will also be sending us home with a PRN medication to help level him out if need be and then follow up with them! Pulmonary wants to hold steady on the vent settings just because he has been doing so well and they don’t wanna make to many changes. We have also discussed Kasai’s puffiness and they think the steroids he was on,ontop of the extra fluid he was getting was causing him to 3rd space and look puffy. We’re hoping with them taking the steroid off and stopping the extra fluid that he will start loosing the puffiness but we will be keeping a close eye on that! As long as Kasai stays steady and shows them he’s ready to go home,we will possibly be discharging Monday or early in the week! We will keep you posted! Thank you all for the continued support,love and prayers!

20/04/2025

Happy Easter From Kasai🐣❤️
And a comparison from last easter to this easter! He has gotten so big and made so many strides since then🥹

Kasai’s Journey

05/07/2025

27/06/2025

25/06/2025

24/06/2025

18/06/2025

17/06/2025

08/06/2025

08/06/2025

13/05/2025

29/04/2025

23/04/2025

20/04/2025

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