05/08/2026
Update on Ashy:
(Sorry for long post, haven’t updated in awhile)
Day +24 (May 4th)…poor baby is/has been over this hospital setting for a while but much more than before. Of course the goal is always discharge, but once it hits this point…there’s not much that helps besides going home or for now Ronald. To be discharged the goal was to wean his IV pain meds, and get all meds switched to oral. Sounds much easier said than done when talking about a 4 year old, and with the amount of medications he needs a day...persuasion isn’t an option. Especially because he doesn’t fully understand why one day he was home, and the next he was isolated in the hospital for 6 weeks. He knows he has a “boo boo” in his head, but it doesn’t make it any easier for him while he’s watching his brother at home, playing outside, with friends, and he’s not able to. He’d do anything to be home to say the least.
A few weeks back he got 2 NG tubes placed in one day, and after puking up the second one, they held off for weeks. April 28th he had an NJ tube instead- instead of the tube just sitting in his belly, it goes further down into his intestine & is much harder to throw up (or so I was told). The hope was discharge for a week after- May 5th. Unfortunately the tube only lasted 3 days, and on May 1st, he puked up the NJ.
Day +28 (Thursday May 7th)- he had his one month brain MRI. The scan unfortunately showed that it has progressed a bit further, but the enhancement (area that lights up with contrast which show’s inflammation) has decreased in the middle of his brain, which is the area that was found in January. Reading that it has progressed, is absolutely terrifying because the hope is that it was caught early enough to where Ashton will not have symptoms. I was told that his primary BMT doctor who is the ALD specialist looked at the scan and said that almost everyone has some progression the first month scan, but the enhancement slightly decreasing is awesome and what they were looking & hoping for. He said he read it as a normal one month post transplant scan.
Day +29 (May 8th today!)- since discharge was pushed back due to losing thr NJ tube, we chose to move forward with a G tube instead. Since this needs to be something decently long term where he’d need it for 6+ months we needed something that he wasn’t going to easily throw up. Definitely scary since it’s a surgery and he’s immunocompromised and healing can be delayed and he’s at much higher risk of infection. He got it this morning, and he did great for the procedure. He has been in quite a bit of pain since waking up, so we are just trying to get that under control…but in 6 hours the tube is good to start using to put meds through and start feeds slowly. He’s been getting his feeds through his central line still (TPN), but the goal is to transition it fully to his g tube, but it’ll take time. The new goal for discharge is on Tuesday, May 12th! His blood pressure has been quite high though, and he’s been needing a lot of meds (sometimes every hour) to control it. They are hoping the oral meds will keep it steady longer since they are long acting.
