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Just Breathe Kamaile

$41,987 of $50,000 goal

Raised by 458 people in 2 months
Created January 10, 2019
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, 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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Aloha Friends and Family today makes 3 weeks that Kamaile has been in the ICU after suffering from Respiratory Distress and eventually Respiratory Failure. As most of you know she was intubated and was on a breathing machine for about 9 days. On January 27 we extubated her and she was able to breathe on her own with Bi-pap/C-pap and a high flow nasal cannula. As you can see from the pictures below she continues to make progress everyday, and as she gets stronger we get closer to being able to take a medical transport to Texas so that she can finish her rehabilitation in the hospital that we pray will give her new lungs. As crazy as it all sounds we know that this is still just the beginning. We continue to encounter obstacles on a daily basis but the progress continues and keeps us moving. We will continue on this path as a family and of course with all of you who surround us with prayer, love, emotional and physical support. Thank you all for helping us along this journey, we would not be able to do this without you. Nainoa (Kamailes 5 year old brother) also wants to thank everyone for all your prayers for his big sister, he wants everyone to know that he loves her very much.

As of now Kamaile is on a nasal cannula half the day and c/bi pap while she sleeps as you can see in the pictures. We are slowly weaning her down to lower levels of oxygen and positive pressure from the machines and so far the pace is working well for her. She actually is very close to being on room air as the O2 concentration is already down to 25% (21% is room air).

We hope to be in Texas by next weekend so please continue to pray for a smooth relocation as well as the miracle of a successful Lung transplant. God bless you all and thank you so much! Aloha Mai!
#justbreathekamaile #umiakahanu
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Aloha friends and family I hope everyone is having a great week! Today is Day 14 and we are finally able to “just breathe” a little easier as we are seeing more positive changes and improvements with Kamailes condition. Two days ago she was able to sip some broth for a couple of minutes at a time before we needed to place the bipap back on her face to keep her oxygen saturation and lung volumes up to par. Yesterday she was allowed to have a smoothie which completely brightened her day! Today, yes you may have guessed she finally gets to have something to eat as she is able to keep her breathing under control with a nasal cannula while she eats. We are so happy for her as we could see how not eating was hampering her confidence. So as of now she is on a Bipap level of 15/8 (started at 18/10), we also have reduced the oxygen concentration to 25% so getting closer to room air, and if she keeps her vitals up today while she eats we will continue to reduce the amount of help from the bipap until were are able to keep her off it during the day and hopefully need it only when she sleeps.

Thank you Lord for granting her this healing so that she may finally have a real meal, please continue to heal her so we can continue on this journey. I also want to reiterate our gratitude to everyone for all the support we continue to get, from dropping off food at the hospital, to loaning us a car for transportation, helping with shipping cargo from Hawaii to Texas, of course my job at the fire department for having my back. You name it if there is a need, someone has offered to fill it for us. ❤️ Thank you so much as you have given us the greatest gift we could ask for which is the ability to not have to worry about the daily stresses that this situation is causing and completely focus on the care and recovery of our precious Kamaile Paet! Please continue to keep Kamaile in your thoughts and prayers, we are so close to her being well enough to transport to Texas and will keep everyone posted on the progress. Mahalo, mahalo, mahalo! #justbreathekamaile #umiakahanu
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$41,987 of $50,000 goal

Raised by 458 people in 2 months
Created January 10, 2019
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