Aloha,

I wanted to update everyone.
Since 11/4 Aurelia was struggling greatly! On 11/5 CVICU doctor told me to prepare for anything and that they have ECMO which is a device that can be used to save her life if her heart goes out before doing the BiVAD and even during the BiVAD surgery. I updated the immediate family and told them the next few days will be scary and that the risk of losing her was a possibility. On 11/5 Aurelia was experiencing major discomfort and belly pains. Doctors changed her meds from oral to iv medication and on 11/6 Doctors withheld water by month because of the intense pain she was having. Starting mid morning on 11/6 Aurelia could not drink anything, no water, no food, no meds. The reason is her heart could not adequately support her stomach and stressing her heart and weakening it.

Aurelia is getting all the fluids and nutrients and calories she needs through her PICC line so she is getting everything she needs in order to stay healthy in that perspective.

Aurelia was struggling greatly and extremely frustrated, mad, sad, and scared since she couldn’t drink any water. She continued to gag and was trying to vomit but since there was nothing in her stomach, nothing was coming out. We explained to her the reason for not having anything in her tummy and she understands the risk of stressing her heart too much where she would need to be on life support until the BiVAD surgery. Aurelia is allowed to fill her mouth up with water BUT she has to spit everything out into a basin and not drink anything. This kid is so strong!!! She is following the rules and is not trying to sneak any water. So far she only had those two fevers on 11/4 but since then only one day she wasn’t on Tylenol around the clock.

On 11/6 Aurelia’s grandparents(Papa and Puna) drove from LA and her Aunty(Keakamai) with two cousins also drove from LA. Kaimi flew from Hawaii yesterday and arrived late last night. My sister is watching Quinn with the help from our close family and friends. Because we were uncertain of what could happen.

As of 11/7 in Aurelia’s true amazing fashion she bounced back and was able to sit up and be more energetic and engaging with everyone. She was a little tired in the am hours and a little in the afternoon, but overall she’s better. Today 11/8, when I got to the hospital since Kaimi stayed with her bedside last night, she was sitting up, playing, talking and smiling. Aurelia did tell me that, she only slept three hours over night. Today’s nurse was the nurse she had on 11/5 and 11/6 and even she said, Aurelia is sooo much better from the first two days.

I wanted to update you all and let you all know that she, as of today is doing great. I never truly know how the day will go but I truly believe in my heart this kid is amazing made and she was made to FIGHT!!! it’s in her body to FIGHT! And I’m so thankful that she has such a strong body to continue to fight. She still can’t take anything by mouth but today she seems to be coping with it a lot better. So yesterday was a better day and today is a good day!!!

We are still planning to do the BiVAD next week but we need to make sure the bacteria is totally out of her system before implanting 4 huge tubes into her heart and body.

Last night I slept at the Ronald McDonald House and for the first time since 11/4 I got, what I consider good sleep. I slept from 1:35/1:45am to pass 8am. I think in the past three days, I only slept about 8 hours and that is being generous… lmao. And we changed hospital rooms 3xs just this week. lol Good thing I know how to pack and stay up late! The adrenaline was and is so high in me it is crazy!

I am thankful for all of your prayers and support and donations to COTA for Aurelia!!! I truly can’t express how that is helping us.

We were lucky to get Ronald McDonald house yesterday for me and the family since everything that is happening with Aurelia. Kaimi will be staying bedside with Aurelia.

Today is a good day!!! Thank you everyone for your continued support, prayers and donations to COTA for Aurelia!!!!