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Just Breathe Kamaile

$48,712 of $50,000 goal

Raised by 479 people in 6 months
Created January 10, 2019
Fundraising Team
on behalf of Matthew Paet
35890048_1547111159113292_r.jpeg35890048_1547111203578872_r.jpeg35890048_1547111317634243_r.jpeg35890048_154711137861050_r.jpeg35890048_1547111417912257_r.jpeg35890048_1547111446399644_r.jpeg35890048_1547111556443400_r.jpeg35890048_15471115949202_r.jpeg35890048_1547111647676769_r.jpeg35890048_1547111686605501_r.jpegOur daughter, Kamaile is 17 years old and lives with cystic fibrosis. In September of 2016, we were given the news that the time had come to start exploring options and teams in regards to a lung transplant. After much research, we landed on Texas Children’s Hospital In Houston, Texas. Their pediatric lung transplant program is the best in the country with the highest success rate. We met with Dr. George Mallory and his team of doctors, surgeons and nurses for the first time in March of 2017. Kamaile went through a series of evaluations over the span of a week and would then be put in front of the medical review board for approval. Thankfully, at that time she had been deemed medically too well to be approved for transplant. So life went on and every 6 months since then, we have traveled to Houston for more evaluations to make sure Kamaile was well and to make sure she was ready (or not) to be listed.  Because with being approved for listing, it would mean relocating our family to Texas. For the next 12-15 months after that initial evaluation, Kamaile seemed to have a bit of a turn around. We had very minimal hospital stays, which meant a lot more time for her to do the things she normally couldn’t do. It was everything she needed....to be a normal teenager for once. If anyone knows Kamaile’s journey or knows anyone with cystic fibrosis, you know the toll it takes and the constant sacrifice given of themselves... just to be able to breathe. Dozens of daily medications,  blood sugar checks, 4 times a day breathing treatments that last for an hour or more. The amount of self care is endless. Fast forward to to the end of summer 2018. Since August, Kamaile has had 3 hospitalizations that have lasted 2-3 weeks at a time. For her 17th birthday, she was in the hospital. Unfortunately, IV medications have been the only thing that works at the moment, which entails hospital stays on Oahu. In November, we were called back to Houston for another evaluation. At the end of our time there, Dr. Mallory gave us his initial recommendation. It was time to relocate. By mid December, we got the official recommendation stating that, Kamaile had been approved by the TCH medical review board for transplant. On January 22nd, our family will be leaving Maui and relocating to Houston, Texas. As soon as we get there, Kamaile will undergo another evaluation and then be listed for a double lung transplant. Our time frame in Houston is unknown. The median wait time for a lung transplant at TCH is about 4-6 months. Although, there have been instances where patients have waited over a year for a donor. While we are there, Kamaile will be under the full care of Texas Children’s and Dr. Mallory and we will be anxiously waiting for the perfect donor for our baby girl. For now, we are savoring every moment we have left on Maui and Oahu with our friends and family. Our hope and prayer is that we will be back and Kamaile will be able to graduate with her class at Kamehameha Maui in May of 2020. Matthew, Kamaile, Nainoa and I appreciate everyone for the love, support and prayers you’ve sent our way over the years.
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Aloha Friends and family, I hope everyone had a fun Easter holiday and that your Mothers Day Weekend will be a blessed one as well. I just wanted to give an update on our situation here in Houston with Kamaile, Nainoa, Tiana and Myself. I also want to thank everyone who continue to support us through all the prayers, love, fundraising, calls, care packages and even visits. I cannot thank you all enough as this is what enables us to keep moving forward in this journey and also reminds Kamaile how much everyone back home loves her. I pray that this in turn will give her the confidence and strength to continue to battle as she always has to overcome the many obstacles ahead so that we may all return home one day to our loved ones.

We are doing good of course trying do be as patient as we can while waiting for the call that Heart and Lungs are available for Kamaile’s transplant. Kamaile did have another hospitalization from April 8-26 for low oxygen levels and a bacterial infection so we were in the hospital during Easter. We did however have a nice brunch in the room and did an Easter egg hunt in the garden for Nainoa.

Unfortunately this hospitalization did take longer than usual for her vitals and lung function to get back to her baseline so we will now be admitting her into the hospital on a scheduled basis to hopefully prevent the length of her stays. As of now her baseline oxygen saturation is at 95% and lung function is in the mid 30%. Kamaile’s daily schedule still consists of 4 breathing treatments a day as well as stretching and exercise and of course 3-4 meals a day. We also have weekly physical therapy sessions and clinic visits to stay on top of her vitals and physical well-being as best as we can.

While we wait for the call we keep ourselves busy with Nainoa who has T-ball, Ninja camp once a week and hopefully will be getting back into Jiujitsu soon. We have seen a couple of Astros games and look forward to the next few months when we will be having friends and family visiting over the Summer.

Please continue to lift us in your thoughts and prayers so that our journey continues as planned and Kamaile is blessed with a new heart and new lungs! God bless you all and thank you again from the bottom of our hearts. Aloha !

#justbreathekamaile #umiakahanu
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Aloha Friends and Family it has been one month since Kamaile Paet was discharged from Texas Children’s Hospital and since we moved into our apartment here in Katy Texas! We have been doing good adjusting to life in the big city and although there are many things to do and places to eat we still miss everyone very much and definitely miss the Hawaii weather and the Ocean.

Kamaile has started her online classes through BYU Hawaii and that along with her breathing treatments which she does four times a day keeps her schedule pretty busy. She is able to get to the Fitness Center at our apartment complex once in a while and we do Yoga a few times a week to keep her circulation and flexibility up. Our son Nainoa is getting used to his schedule as well which include T-ball a few times a week and bike rides with dad around the many bike trails here in Houston. He also started school on April 1st at the Children’s Learning Adventure which is a pretty amazing pre-K facility!

We are so grateful to be together as a family and although we struggle here and there with our situation we know that as long as we have faith in God we will overcome any adversity.

As we continue on this journey we finally got the word today from Texas Children’s Hospital that Kamaile is actively listed as a recipient for her transplant. The reason why the listing process has taken so long is because of a heart condition that was discovered during this past hospitalization. After an Echo taken in January it was found that the ejection fraction of her heart (which is the effectiveness of blood that gets pumped out of the heart to the pulmonary circulation) is at 30-40%. A normal ejection fraction is 55% and above. This abnormality is due to a genetic dilated cardiomyopathy which has presented the low ejection levels by the weakening of organs from her Cystic Fibrosis. With that being said she is not only listed for a lung transplant but for a double organ Heart and Lung Transplant. As hard as it is to say and hear we were informed by the medical team that this procedure will be necessary because if her heart is not strong enough to compensate for the lung transplant then her chances of surviving the surgery greatly decrease. This development has been very difficult for all of us especially Kamaile as it adds another level of uncertainty, fear and anxiety to an already scary situation. Please pray for Kamaile and her family as we await the call which may come at anytime now that she is officially listed.

We know that this surgery will be nothing short of a miracle and we are so thankful that we are in the best hospital in the country for this to occur. All of the prayers and mana that you all have provided us over these past few months guide us and the doctors everyday so please continue to lift us up in your hearts and thoughts. Mahalo to you all we love you and know that with God all things are possible. #justbreathekamaile #umiakahanu
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Aloha Friends and Family, as the great Dr. King said Free at last , Free at last, Thank God Almighty we are Free at last! After exactly 6 weeks of being confined to a hospital bed Kamaile has been discharged from Texas Children’s Hospital and at around 9 pm on February 28, 2019 she arrived at her new home just outside of Katy Texas. We are so thankful to everyone from the doctors and medical staff, our prayer warriors, friends and family sending food, supplies and flowers, I mean you name it if we needed something it was done. We have been lifted up by all of you to a point where failure was not an option and once Kamaile was well enough she stepped on the gas and pushed through to that goal of being discharged. I am so proud of her and happy that she gets to step outside and breathe some fresh air and do some of her favorite things like go out to eat and go to the mall for some makeup! God bless you Kamaile and thank you Lord for healing her and giving us this chance to be together! I know we still have a long road ahead of us but this small step is such a big victory that we are going to celebrate as any Hawaiian family living in Texas would, BBQ! AYCE Korean BBQ that is .

Over the past few days Kamaile has improved pretty dramatically to say the least. She is completely off of oxygen for now and keeping her saturation at a 97% average. We do have home oxygen just in case she has some troublesome days so are prepared on that end. She impressed the Cardiac and Pulmonary physicians by her physical therapy sessions as well. During her 6 minute walk she walked roughly a quarter mile and her oxygen only dropped to 94% and recovered to 98% within a minute after completion. Her Spirometry results (which is a test that measures lung function) was at 48% the highest it has been since July of 2017. Dr Mallory one of our Pulmonologist said it best “ Wow Kamaile you sure do not look like a person that was intubated and nearly died a few weeks ago”. We are so happy for all these recent developments but must always remember what Dr Mallory said as we know that what happened on January 17 can happen again. We are going to be extremely cautious with treatments and prevention and hope we can maintain a high level of care while still allowing her to be a 17 year old teenager who loves life. Mahalo everyone for all you have done and continue to do we are forever grateful.

I also want to send a special shoutout to Shawn Tanoue Barry Masuda and the gang at Tropic Fish Hawaii. I called a few weeks ago and asked if they had a way to fly our boxes and basic items like clothes and medical equipment etc. to Houston since I no longer was going to be able to drive them from California. As in the true Aloha spirit they took care of the entire process, we are so grateful for this as it will give Kamaile and Nainoa a small amount of security in a new home having some of their favorite toys, clothes, makeup, etc.

We will continue to keep everyone updated on Kamailes progress as we transition to being listed for Kamaile’s Lung transplant. We pray that the Lord continues to keep her well and strong as we continue on this road. Mahalo and Aloha to you all we love each and everyone of you! #justbreathekamaile #umiakahanu
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Aloha Friends and Family, well today is the day! Hallelujah, today Kamaile Paet finally will be leaving Kaiser Moanalua with her momma on a medical transport flight and will arrive in Houston to check into the Texas Children’s Hospital. It has been over a month now since she went into respiratory distress and sent us into the biggest reality check of our lives. She continues to fight for every breath but is stable and knows that we have only just begun. Since this is a hospital to hospital transfer and she is still on high flow oxygen we do not know when and how she will be able to go home as of yet. There is a chance she needs to remain on home oxygen with C-pap at night as well as many other interventions so we continue to pray for a smooth transition and eventual release from the hospital when she is ready. Upon being released from the hospital we will be living in Katy Texas which is within the Houston city limits.

In order to make the move a bit easier for when Kamaile is released my son Nainoa and I were able to fly up to Houston on Friday to work on logistics. Since then we have been looking for a place to live as well as securing our tangible items such as my truck, clothes, etc. which were shipped up here over the past month. A big mahalo to Shawn, Barry and the gang at Tropic fish Hawaii who shipped our personal belongings from Oahu to Houston for us, we are so thankful to y’all.

Things up here have been going good. I think we have found a place and we hope to be working on getting some furnishings today as we prepare for Kamaile and Tianas arrival at around midnight. Nainoa was even able to catch his fist T-ball practice and cannot wait for his second practice later on today. Poor kid, he has been whisked out of school, forced to live at a hospital and now in a huge new place with no one but adults to play with. With all that he still has an immense love for life and there is never a dull moment. We hope to get him into a school soon and I’m sure he will thrive no matter what. We also want to thank Tasha-Leigh Yong and Wela Yong. They have taken time off of work to help us up here in Houston with moving and logistics and we are so lucky to have you!

Please keep Kamaile and our ‘Ohana in your prayers as this transition will continue to test our faith and strength as a family knowing what still lies ahead. We leave it up to the Lord to guide the Team of Doctors and Medical professionals who lead us in this journey. We are scared but have faith, alone but have each other. There are times we feel lost but continue to follow this road illuminated by all the prayers and love one day at a time. I can never thank you all enough for your love and support. Aloha and Mahalo from our entire ‘Ohana.
#justbreathekamaile #umiakahanu
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$48,712 of $50,000 goal

Raised by 479 people in 6 months
Created January 10, 2019
Fundraising Team
on behalf of Matthew Paet
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