My name is Kim and Amari is my grandson of my daughter Courtney. On Sunday, November 9th, Amari abruptly stopped eating and drinking, but he does that sometimes, so we didn't think too much about it. But when Monday afternoon came and he also then stopped talking and making any of his normal sounds and being his happy outgoing self like he always is, she got nervous and called his neurologist at Boston Children's Hospital and let them know what was going on because she wasn't even able to give him his seizure meds or any of his medication for that matter. So, the on-call neurologist suggested we take him to Cape Cod Hospital because then if anything, they can get him his medication through IV. We do that, but it is harder than they anticipated, and we need to sedate him with some Ketamine and Ativan in order to get an IV in. We do that, get him his meds, but he's still not making any progress. The hospital then says that they are going to have to send us to Boston Children's via EMS. We get to Boston, they do a CAT scan, test for flu, COVID, and strep, and all come back negative, but his white blood cell counts were high, so they needed to figure all this out. Because he cannot tell us what is wrong and everything else, plus with the anxiety of him being in the hospital with all the doctors and everything, we had to sedate him and send him up to the MICU.

We have been in the MICU since Tuesday afternoon. All day Tuesday, he was pretty much sedated most of the day while they got him hooked up to his IV in both hands and got him comfortable. But then when they would try and wean him off the medication, he was getting very agitated and violent.

Wednesday came, and the team of doctors decided to place an NG tube to give him his medication and nutrients that way and then slowly start to wean him off some of the medications like Dexmedetomidine and Ativan. Well, that only went okay. It was very hard on him; every time he woke up, he would get agitated and try and rip everything out.

Thursday morning, he wakes up doing okay. I am trying to soothe him to relax, and that quick, he rips out the NG tube, so we all gather to figure out what to do. I spoke with the team this morning, and they were going to slow down his feed today since that may have been bothering him a little bit overnight, speak with Neuro, and reinsert the NG tube. We put the NG tube back in, and then this afternoon, Neuro came down and let me know that with his ammonia levels being so high and him being on the Valproic Acid for the seizure, this can happen, so they will start him on a supplement through his NG tube, but the doctors still need to figure out why he is still not waking up and figure out what is causing that and try and reverse it.

So, as of right now, until they can figure all of this out, we will be in the hospital, so we do not have a go-home time frame as of right now.

We ask you for help for our guy who is nothing short of a fighter because Courtney is going to need to pay all the bills, fix her car, and they are not sure that insurance is going to cover this whole stay, so she will have to find a way to pay all of the medical bills somehow too.