Kyla Rose's Medical Support Fund

$18,735 of $25,000 goal

Raised by 290 people in 45 months
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Amy Avery
on behalf of Leigh Rainey
 FLOYD, VA
On February 25th, 2015 after weeks of breathing difficulty that was believed to be pneumonia, Kyla Rose was diagnosed with dilated cardiomyopathy (DCM).  DCM occurs when disease affected muscle fibers are enlarged or stretched (dilated) in one or more chambers of the heart. As the heart enlarges, it decreases its efficiency in pumping blood through the body. When the disease progresses to congestive heart failure, fluid can build up in the lungs, as is the case for Kyla. 

The first echocardiogram was done during her very first visit to pediatric cardiology in Roanoke at Community Hospital. On Monday, March 16th, she had surgery to plant a subcutaneous implantable cardioverter defibrillator in her chest at UVA Medical Center in Charlotteville, VA.

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This device will help her stay alive, but it will not fix any of the problems with her heart. It is there to shock her heart if it goes into ventricular fibrillation. The doctors have called it a 1/3, 1/3, 1/3 scenario: 1/3 of a chance for getting better, 1/3 of a chance for staying the same, or 1/3 of a chance for getting worse. The lifestyle choices she makes, and medicines she continues on will be what might (a big might) help her improve

This fund will go to help support the family in this time of upheaval. Bills still need to get paid, rent and food covered, and the time in recovery and traveling to and from the hospital adds up quickly in expenses.

Thank you all for your love and support. Please continue to hold Kyla, Mara and all their family closely in your hearts and pray they are guided through this process with gentle hands.

Update on Feb 6, 2016
Update on Kyla:

It is my sincere hope that the week-long treatment Kyla received at UVA last week will allow her a respite, however brief, because the excess fluid that was contributing to her symptoms has decreased. She was on IV diuretics the entire time she was at UVA and lost about 10 pounds in a week, most of which was fluid build up. She's now on stronger diuretics and we'll be keeping a close eye on her potassium levels to make sure they stay as stable as possible since they have a direct effect on her heart function.

While we were there, Kyla was denied entry into UVA's transplant program because she is, at this time, deemed "too weak" to survive the surgery. We are actively seeking a second opinion and will likely be pursuing evaluation at Duke because their criteria is different than UVA's. For example, they have performed heart transplants on patients in their 70's. UVA does not accept transplant recipients who are over 70.

As we left the hospital on Wed (literally only an hour or two after she was discharged), we received a call from a neurologist Kyla saw last August through a MDA clinic. They performed another series of genetic tests that were evaluated at Emory and those tests revealed other genetic mutations, possibly resulting in a condition called "Bethlem's Myopathy." I am in dialogue with Kyla's genetic counselor at UVA, who is cross-comparing the new info with the results we received in June in consultation with Kyla's neurologist at UVA, as well as (hopefully) the researchers at Emory who found the other mutations. We will meet with him next Thurs, Feb 11, after Kyla's post-hospitalization follow-up with the heart failure clinic. We will also be following up with her neurologist in Roanoke on March 8th. In the meantime, I am aggressively seeking referrals to Duke's transplant program and working with Physical Medicine and Rehab doctors to (hopefully) determine Kyla's ability to strengthen. It appears as if she will be able to, carefully, since the cardiac condition precludes any strenuous physical therapy. But at the moment that's still anyone's best guess. Reducing the fluid may help some with her symptoms but will not address the issue of muscle wasting.

We deeply appreciate being home with our strong support system in Floyd. Though we were considering a potential move to UVA, given the need to be as close as possible if she were accepted for transplant, that decision is currently in stasis. We're about 3 hours away from both Duke and UVA at the moment and have a decent maintenance program close by that will take care of immediate needs. If necessary, Kyla can be stabilized at a hospital close to home and transported to Durham or Charlottesville. She rode in an ambulance from Radford to UVA last week given that she was not stable enough to be transported without life support equipment close by.

The process of uncovering the latest diagnostic information in order to reach a prognosis will involve a whole new bunch of minds in the mix, and considering the circumstances, the more people participating in the dialogue the better.

For now, we're monitoring Kyla's weight and vital signs closely and reporting them to our team at UVA on a daily basis. We'll be reassessing her physical therapy program based on transplant criteria and working towards that goal in whatever ways we can. And as always, we are so grateful for the love and support from all of you. Thank you for walking this difficult road with us and for bearing witness as we move forward.

~Mara
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Hey All!! It's happened!! Yeah, just in case you have been living in a cave and hadn't heard, Kyla has her new heart!

Thank you sooo much for the support you have offered to Kyla along this journey. Now the long road to recovery and making sure this new heart sticks is in progress.

Because GoFundMe does not allow us to transfer the recipient of the funds and Leigh and Mara are no longer partners, we have created a new GoFundMe account called Support for Kyla's Healing Heart which you can find at https://www.gofundme.com/ussvn2vw?ssid=830899386&pos=3.

Please share this new fundraising campaign and thank you again for everything you have done!

Big love!
Amy
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Kyla went into her open heart surgery fragile and compromised. She had not eaten in days nor been able to get out of bed. This affected her recovery. Though Kyla was getting out of bed with the help of her physical therapist, several nurses, Dylan and myself only a few days after surgery, she was not able to really help with the process until a few days ago.

Thursday, Sept 15, she walked for the first time (before that she would throw up every time she stood up) and Friday, Sept 16, she walked short distances 4 times. We were hopeful and encouraged. On Saturday, Sept 17, she went into a terrible arrhythmia after throwing shorter runs of vtach all night. For over two minutes her heart could not settle down.

Because her S-ICD was deactivated after surgery, they corrected the long run (over 500 beats) with 100 mg of lidocaine. The external defibrillator was on a cart by her door in case that did not work, but fortunately, she did not have to be shocked again. She is still dealing with residual pain from the two times she had to be shocked in the 24 hours post surgery.

Kyla described being awake during vtach like firecrackers going off in her chest with every heartbeat. In the past, she would pass out after 17 or 18 beats. Her device saved her life several times over the past year and half by sensing the vtach and shocking her back into a stable rhythm. Because the L-VAD now beats for her heart, her flows were only reduced by about 25% during this incredibly long two minutes. She was awake, wide eyed and terrified, throughout.

Because no immediate medical attention was needed other than the lidocaine, Dylan and I were able to stay with her and hold her hand. After that, she was exhausted, sedated and slept for most of the rest of the day. They placed her back on a lidocaine drip to control her arrhythmias. Her arterial line quit working, so after having to be stuck for labs several times she opted to have another placed. It was difficult and took a long time—she was not able to rest again until after midnight Sept 17 into 18.

Despite this setback, yesterday was a good day. She was able to eat (small portions, still, and her taste buds are weird—but she ate!), able to walk (carefully and for two short distances) and able to leave the floor briefly to see the fish tank and the sky through the big windows by the elevators. After any exertion, she is exhausted and tends to sleep for at least a couple of hours.

Before the incident on Saturday, her team was optimistic about her being able to rehab and return home (eventually) to wait for her heart. Though that is still possible, it is now obvious that she will need to have different medications and that her S-ICD is crucial to her stability. The L-VAD did its job beautifully—unfortunately, it also means that if she is shocked, she is likely to be awake for it since a dangerous arrhythmia will not compromise the blood flow to her brain like it did before there was a mechanical pump beating for her heart.

My brother posted a photo of Kyla when she was very young, with a fierce expression on her face, captioned “This is the strongest person I know.” Kyla does not feel very strong at all right now. She feels incredibly weak, she is still in a great deal of pain, and there is a lot she does not recall about the last few weeks. Still, and again, she is the very strongest person I know. She continues to be honest, vulnerable, expressive and to show good humor whenever possible. Her courage encourages me to continue on with whatever grace I can muster—it is hard to stay calm and sane in the midst of her trauma and the trauma we are surrounded by constantly as we live (for over three months) in an intensive care unit. Life is still triage. Love is what carries us through. We are reminded all the time of how important and how valuable love is and we breathe as deeply as our lungs will allow and blow out the pain.

It takes effort I did not know existed. It takes a kind of strength I did not comprehend. It takes compassion, forgiveness and a consistent re-evaluation of the situation at hand so that we can respond swiftly and appropriately. Thank you for your love, prayers, strength and witness.
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Today Kyla went in for a heart cath. She returned with another Swan-Ganz Catheter. We are calling it Swan 2.0. Here’s some background info on her first one: https://www.facebook.com/notes/mara-eve-robbins/update-on-kyla-july-3-2016/10153981016204822.
Since she has been hospitalized, Kyla’s arrhythmias have been kept relatively controlled by careful monitoring and supplementation of her electrolytes and an IV infusion of lidocaine. Over the past week Kyla has been experiencing varying degrees of symptoms congruent with lidocaine toxicity.

Not too long ago, her lidocaine levels stayed relatively stable because the IV line carrying it ran through her (first) swan cath at a steady rate with no other meds included. When her swan cath was removed, her lidocaine ran through one half of a double-lumen PICC. Her epi and her milrinone ran though the other half and could not be combined with her other med-lines. Unfortunately, that meant that every time she received other IV meds (magnesium, potassium, ativan, etc) she got a tiny extra dose of lidocaine. This was not especially noticeable until she had to switch over from oral potassium to IV potassium and it took us a little while to realize her symptoms were not related to the potassium. The therapeutic drug range for lidocaine is 1.5-5.0 mcg/mL.

Last Sunday Kyla’s lidocaine levels were 5.4.

Her symptoms were most severe that day, but persisted through the week every time she got an extra dose of lidocaine when her other meds were delivered. They lowered her dose, tested frequently and had her back within therapeutic levels, but she did not improve significantly. Parts were directly associated with the lidocaine, but they were also a symptom of progressing heart failure. This is why the transplant team decided on Friday that it was time to take another look at her pressures and scheduled the heart cath for Monday.

They also decided to take her off of the lidocaine and try a different anti-arrhythmic, Sotalol. For most of Saturday, Kyla tolerated the Sotalol relatively well. She was tired, more so than usual due to the fact that it lowered her heart rate and blood pressure significantly, and she woke up nauseous, but by the end of the day she was feeling well enough to get up to wash her hair and have a bath.

She was sitting on the edge of her bed and we already had soap and water, shampoo and towels ready when her device fired. She said she felt “weird,” clutched at her chest, the monitor went crazy (her heart rate was 206 when I looked, 236 when Dylan looked, and it was between 250 and 260 when it fired) and she passed out. It happened so quickly that she was awake again within seconds. They restarted her lidocaine. Her potassium was also at 3.2, which is far too low for her. It was supplemented aggressively and she was, eventually, able to get some sleep.

Late this afternoon, Kyla went down for her cath. She returned with her new swan and her cardiologists returned with sobering news. Her pressures are down, her heart failure has progressed, and she is looking at surgery to place a VAD very soon, possibly as soon as the end of this week.

A heart could still come in time. Throughout this long evening, we heard many nurses and doctors say that transplant often happens once a VAD surgery has been scheduled; a few patients have even gotten the news as they were headed to the OR. We keep hoping and praying that Kyla’s heart will come. We still believe that it will. We are grateful that there is a mechanical heart that can beat for her while she waits for her real one. We despair that she will have to endure more than one open heart surgery.

Sometimes we do not know what we feel, so we just endure.
Thank you for your love, support, prayers, mail, art, words, and witness. Thank you for holding us through this. My updates after this one are likely to be brief. If you have questions I will do my best to answer.

Namaste
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From Mara on August 22, 2016

Today Kyla went in for a heart cath. She returned with another Swan-Ganz Catheter. We are calling it Swan 2.0. Here’s some background info on her first one: https://www.facebook.com/notes/mara....

Since she has been hospitalized, Kyla’s arrhythmias have been kept relatively controlled by careful monitoring and supplementation of her electrolytes and an IV infusion of lidocaine. Over the past week Kyla has been experiencing varying degrees of symptoms congruent with lidocaine toxicity.

Not too long ago, her lidocaine levels stayed relatively stable because the IV line carrying it ran through her (first) swan cath at a steady rate with no other meds included. When her swan cath was removed, her lidocaine ran through one half of a double-lumen PICC. Her epi and her milrinone ran though the other half and could not be combined with her other med-lines. Unfortunately, that meant that every time she received other IV meds (magnesium, potassium, ativan, etc) she got a tiny extra dose of lidocaine. This was not especially noticeable until she had to switch over from oral potassium to IV potassium and it took us a little while to realize her symptoms were not related to the potassium. The therapeutic drug range for lidocaine is 1.5-5.0 mcg/mL.

Last Sunday Kyla’s lidocaine levels were 5.4.
Her symptoms were most severe that day, but persisted through the week every time she got an extra dose of lidocaine when her other meds were delivered. They lowered her dose, tested frequently and had her back within therapeutic levels, but she did not improve significantly. Parts were directly associated with the lidocaine, but they were also a symptom of progressing heart failure. This is why the transplant team decided on Friday that it was time to take another look at her pressures and scheduled the heart cath for Monday.

They also decided to take her off of the lidocaine and try a different anti-arrhythmic, Sotalol. For most of Saturday, Kyla tolerated the Sotalol relatively well. She was tired, more so than usual due to the fact that it lowered her heart rate and blood pressure significantly, and she woke up nauseous, but by the end of the day she was feeling well enough to get up to wash her hair and have a bath.

She was sitting on the edge of her bed and we already had soap and water, shampoo and towels ready when her device fired. She said she felt “weird,” clutched at her chest, the monitor went crazy (her heart rate was 206 when I looked, 236 when Dylan looked, and it was between 250 and 260 when it fired) and she passed out. It happened so quickly that she was awake again within seconds. They restarted her lidocaine. Her potassium was also at 3.2, which is far too low for her. It was supplemented aggressively and she was, eventually, able to get some sleep.

Despite the trauma of being shocked, she persisted bravely on Sunday and was able to have her bath, wash her hair and even get outside in her wheelchair for a few minutes in the evening after a cooling rain.
Late this afternoon, Kyla went down for her cath. She returned with her new swan and her cardiologists returned with sobering news. Her pressures are down, her heart failure has progressed, and she is looking at surgery to place a VAD very soon, possibly as soon as the end of this week.

A heart could still come in time. Throughout this long evening, we heard many nurses and doctors say that transplant often happens once a VAD surgery has been scheduled; a few patients have even gotten the news as they were headed to the OR. We keep hoping and praying that Kyla’s heart will come. We still believe that it will. We are grateful that there is a mechanical heart that can beat for her while she waits for her real one. We despair that she will have to endure more than one open heart surgery. Sometimes we do not know what we feel, so we just endure.

Thank you for your love, support, prayers, mail, art, words, and witness. Thank you for holding us through this. My updates after this one are likely to be brief. If you have questions I will do my best to answer.

Namaste.
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$18,735 of $25,000 goal

Raised by 290 people in 45 months
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Created March 16, 2015
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SB
$200
Sky Babu
27 months ago

A FB friend of Colleen, I am keeping Kyla and her family in my thoughts and heart. Sending love and good wishes that Kyla will soon be on her way to much improved health and energy!

LC
$300
Lauren Cooper
27 months ago

We are sending our best wishes!

BF
$500
Becky Farnham
27 months ago

Sending you all my love and support!

$30
Anonymous
27 months ago
$100
Anonymous
27 months ago
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