Still haven’t found a diagnosis to pin point what exactly is happening with my Krew Krew 🙁 The doctors say it’s a perplexed situation they can’t figure out a cure for, & that they haven’t seen anything like this. This time, they did the same procedures that helped last time for ADEM & it hasn’t worked. It caused seizures & he’s still on the seizure meds, but now he can’t eat so he’s been on the feeding tube & some days he can’t tolerate it. So we’re fighting that daily.
In pictures, in a still moment he looks “normal” but here he is unstable, looks confused, can’t keep still, can’t relax, cries if you move him, his arms are stuck wide open, he’s grinded his teeth down half way, his arms are clenched in a fist however his legs do move properly though. We’ve been diligently working with physical therapy & occupational therapy to help his tone. We’ve put him on seizure medicine that is pointed directly towards helping the pain.
Last week I had a meeting with the whole team. After this week, we are trying one last treatment of IVIG for 2 days. It will end Tomorrow. After that, he will be looked at on Friday to see if he’s able to fly to Cali. My insurance only covers being discharged from Oahu, put onto a commercial flight with krew on a feeding tube & a pump of his seizure meds hoping nothing happens in a 6 hour flight. I’m not okay with that as any mama would be. I have upped my GFM because I’m trying to push for my insurance to help medically take us privately with nurses on board to help get him safely transported to another hospital. If not I will 100% pay out of pocket in order for Krew Krew to be on a medical plane!
Iv been in contact with 2 hospitals in OC/LA to have him transferred to one of those. Waiting on approval who will take us & get our boy happy & healthy again! We will know when we are leaving by the end of this week.
As a parent you can only imagine what I’m going through. Really missing my son Kash in Maui, & being far away from him with Krew trying to juggle all of this. It came out of left field so just wanted to really say thank you for praying for us & helping us however you can ( big hugs to you all ) love you friends & family!!!!! Love Chloe & krew krew & kashy boy
