Kehlani Rae Thao Boone Journey

Shes a happy baby!!!!

So far, Kehlani Rae is doing good and stable.. on Monday the 15th we will be going back to shands for appt. We will see if she has improve in her weight and/or echo..

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Kehlani Rae Thao Boone Heart Transplant organized by Brown Tae Hi, My name is Thi Brown. I’m a single mother of 2 beautiful daughters. Lilyanh is 5… Brown Tae needs your support for Kehlani Rae Thao Boone Heart Transplant

We are still in the ER by mu house. We are getting transported to Shands ER

Kehlani Rae is doing good. Sorry for not updating with you guys

Just found out that Kehlani Rae is still listed on heart transplant as Status 2

I thank God everyday for giving Kehlani Rae a second chance at life. She is meant to be here. She is good and stable. We just working on her gross motor skills, which she is delaying and and working with her right arm which is slightly weak. Physical therapy had her on her tummy and she wasn't having that at all. Speech therapy worked with her on the feeding cause I was worrying with the lil space on the sides of her mouth however speech wanted me to give jaw and cheek support.

Kehlani Rae is doing good. Appt went ok. Shes her happy self

Sorry for the late post: about a week ago, kehlani made her first appearance home since beginning of the year. We are excited to be home.. so far shes doing fine but the shots she had to get on past wednesday, shes been fussy and not feeling good but long recovery still ahead. Her primary Pediatrician wants her to still do speech and physical and occupational therapy as well. Appt on tuesday back to Gainesville.

Playtime

Kehlani Rae is doing good. Playing and always watching tv and loves to sleep

Update: NG tube is in from yesterday. She had her first feeding last night through the tube but today was by bottle and whatever was left was fed through the tube. Chest tubes are out as well.

Surgery went great yesterday. she got her breathing tube taken out today

Kehlani Rae is been in surgery since earlier this morning. She is currently on the by pass machine i will get another update in about an hour..

Kehlani Rae is doing great. Three days til she gets off the Berlin heart VAD. Playing with her toys

Kehlani Rae is has a PICC line scheduled this week and being schedule to be taken off the berlin heart VAD next week. Her heart is recovering. She is a happy baby.

Next week Kehlani Rae Issa getting a new PICC line. The week after she will be getting off the Berlin

Weaning process @ 3pm. 🙏🙏drs said she will be the third baby ever to have been wean off the Berlin. They had two others within the last year. So proud of my princess warrior. Thank you for continuing prayers for my princess warrior. We love every single one of you guys.

Everything is going good. Can't wait till they start the weaning process off the Berlin Heart starting Monday and the following week they will take her down to the cath lab. But we will still be in the hospital for about a month or two to monitor how her heart is if she does good without the Berlin. We will see.

Kehlani Rae is doing great. Still waiting for a heart to be available. Please continue to pray for her. My family and I are greatly appreciate for the prayers.

She’s doing good. She is still in need of heart transplant. Doctors say could take 4-6 months before one is available.

You can still donate if you like. Anything will help and greatly appreciated and prayers as well as we are still in need for a heart transplant. Doctors said it can take up to 4-6 months before a heart is available for Kehlani Rae. She’s doing good and staying strong as well. Thank to everyone whose been taking time out their day to pray for Kehlani Rae and those who donated as well. I’m truly great full for that and from the bottom of my heart every single one of you guys mean a lot to me.

Kehlani Rae Thao Boone Heart Transplant organized by Brown Tae Brown Tae Kehlani Rae Thao Boone Heart Transplant Hi, My name is Thi Brown. I’m a single mother of 2 beautiful daughters. Lilyanh is 5 and Kehlani Rae is 3 mo

Kehlani Rae is still doing good. She’s a strong fighter just like me and her sister, Lily. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ Patiently waiting for a donor to be available. God has his way.

Kehlani Rae got her IV out from her right inner thigh.

Kehlani Rae is still doing good. It's a waiting game for a donor heart to be available.

Kehlani Rae is still doing good. She's off her breathing tube.

Tomorrow, Kehlani Rae is getting her chest tubes out and hopefully the breathing tubes as well. So far, she been doing good with the machine giving 50% oxygen while my Kehlani Rae is breathing the other 50% by her self. Im praying she gets her breathing tube out tomorrow so I can hold my Kehlani Rae again. It's been two weeks since I have held her.

Here is the pic of what the Berlin Heart VAD is, in case you guys weren't sure or didn't know what is.

Update: Kehlani Rae did really good in surgery for the Berlin Heart VAD until a heart is available. She's currently stable and sleeping. God is good all day, everyday.

Kehlani Rae is getting an emergency surgery tomorrow to get the Berlin Heart VAD until an artificial heart is available. I will keep you updated tomorrow.