Kayli's hospital admission date is Wed. June 12th, 3 days after her Celebration of Life! We have a LOT to do to get clearance for the surgery on the day of admission (to put the halo on). The complete spine surgery is tba, depending on how well Kayli tolerates the halo (to stretch out her tendons and muscles and set her up for the ultimate results for spinal corrections).
Friday, May 31, 2013
Friday, May 24, 2013
We Choose Surgery!
We feel so much better after the surgical appt today! There is a 90% chance she will make it through the surgery! <3 We will get a call Tues, to move forward with the inpatient Traction (PICU), then on to the surgery! We were basically given a choice 1. no surgery and Kayli will not be with us much longer 2. surgery with 90% chance of a better and longer life! <3 We choose surgery! <3
Please say prayers of comfort and guidance for our family
Please pray for comfort, as we go forward with our decision of spine surgery for Kayli. I'm leaning on my life motto, "Do your best and give God the rest", knowing that it is ultimately in God's and Kayli's hands... but I keep second guessing our decisions for her. She really needs this surgery, but it is a MAJOR surgery and I don't want to lose her, although I know that is selfish of me. I keep thinking we may have more time with her if she doesn't have the surgery, but then again, we may have more time with her if she DOES have the surgery, and her life will be much easier with the results of the surgery. As her parent, I want to go to sleep at night without regrets, knowing I did everything I could for her, to help her in life. It is such a personal journey, and I thank you all for respecting and supporting us in this amazingly Blessed journey we have been given, with our very loved and adored, Kayli. We would chose the same pathways for each of our 4 children, and we have! Surgery for us, means hope in our future together. Whether we make it through our journey a day, a week, or years...we know that we are inseparable spiritually, and God has Blessed us. Thank you for the positive thoughts and prayers for guidance and comfort! God Blessings to You, Now and Forever. <3
Thursday, May 23, 2013
She's doing it again! Defying all odds against her, Kayli can pull herself up to a sitting postion! <3 You tube, Kayli pulls herself up to a sitting position!
Micropartical oxygen injection into veins can keep you oxygenated for 30 minutes even when in respiratory distress
This is awesome! For those who are in heart failure, lung failure, airway obstruction, etc...if this in injected, it makes oxygen in the blood stream for 30 minutes! Amazing discovery! Micropartical oxygen injection
Injecting life-saving oxygen into a vein
Oxygen microparticles could deliver oxygen when breathing is impaired
June 27, 2012
Boston, Mass. - Patients unable to breathe because of acute lung failure or an obstructed airway need another way to get oxygen to their blood—and fast—to avoid cardiac arrest and brain injury. A team led by researchers at Boston Children’s Hospital has designed tiny, gas-filled microparticles that can be injected directly into the bloodstream to quickly oxygenate the blood.
The microparticles consist of a single layer of lipids (fatty molecules) that surround a tiny pocket of oxygen gas, and are delivered in a liquid solution. In a cover article in the June 27 issue of Science Translational Medicine, John Kheir, MD, of theDepartment of Cardiology at Boston Children’s Hospital, and colleagues report that an infusion of these microparticles into animals with low blood oxygen levels restored blood oxygen saturation to near-normal levels, within seconds.
When the trachea was completely blocked— a more dangerous “real world” scenario—the infusion kept the animals alive for 15 minutes without a single breath, and reduced the incidence of cardiac arrest and organ injury.
The microparticle solutions are portable and could stabilize patients in emergency situations, buying time for paramedics, emergency clinicians or intensive care clinicians to more safely place a breathing tube or perform other life-saving therapies, says Kheir.
“This is a short-term oxygen substitute—a way to safely inject oxygen gas to support patients during a critical few minutes,” he says. “Eventually, this could be stored in syringes on every code cart in a hospital, ambulance or transport helicopter to help stabilize patients who are having difficulty breathing.”
The microparticles would likely only be administered for a short time, between 15 and 30 minutes, because they are carried in fluid that would overload the blood if used for longer periods, Kheir says.
Kheir also notes that the particles are different from blood substitutes, which carry oxygen but are not useful when the lungs are unable to oxygenate them. Instead, the microparticles are designed for situations in which the lungs are completely incapacitated.
Kheir began investigating the idea of injectable oxygen in 2006, after caring for a little girl who sustained a severe brain injury resulting from a severe pneumonia that caused bleeding into her lungs and severely low oxygen levels. Despite the team’s best efforts, she died before they could place her on a heart-lung machine. Frustrated by this, Kheir formed a team to search for another way to deliver oxygen.
“Some of the most convincing experiments were the early ones,” he says. “We drew each other’s blood, mixed it in a test tube with the microparticles, and watched blue blood turn immediately red, right before our eyes.”
Over the years, Kheir and his team have tested various concentrations and sizes of the microparticles to optimize their effectiveness and to make them safe for injection. “The effort was truly multidisciplinary,” says Kheir. “It took chemical engineers, particle scientists and medical doctors to get the mix just right.”
In the studies reported in the paper, they used a device called a sonicator, which uses high-intensity sound waves to mix the oxygen and lipids together. The process traps oxygen gas inside particles averaging 2 to 4 micrometers in size (not visible without a microscope). The resulting solution, with oxygen gas making up 70 percent of the volume, mixed efficiently with human blood.
“One of the keys to the success of the project was the ability to administer a concentrated amount of oxygen gas in a small amount of liquid,” Kheir says. “The suspension carries three to four times the oxygen content of our own red blood cells.”
Intravenous administration of oxygen gas was tried in the early 1900s, but these attempts failed to oxygenate the blood and often caused dangerous gas embolisms.
“We have engineered around this problem by packaging the gas into small, deformable particles,” Kheir explains. “They dramatically increase the surface area for gas exchange and are able to squeeze through capillaries where free gas would get stuck.”
The study was funded by three awards from the Technology Development Fund at Boston Children’s Hospital Boston and a U.S. Department of Defense Basic Research Award to Kheir.
Boston Children’s Hospital is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Boston Children’s research community. Founded as a 20-bed hospital for children, Boston Children’s today is a 395 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Boston Children’s also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Boston Children’s, visit: http://vectorblog.org.
Wednesday, May 22, 2013
Kayli's spine
Kayli has had an amazingly well week! We have been stretching out her back, and added a little extra water to her diet, which has been keeping her heart rate in a more typical range and her oxygen saturations have been in the high 90's as well! We hope to get more information today, about her inpatient date for traction (a halo) and spine surgeries.
I am hesitant to post pictures publicly of her spine, because it is very distorted due to the prolonged anoxia/lack of oxygen (when she passed away for 32 minutes). Just know that her spine is severely affected, and is compromising her basic organ functions. Her 3 life threatening spine deformities (Kyphoscoliosis, Scoliosis, and Lordosis) have nothing to do with Trisomy 18, however, her recently diagnosed spina bifida and small congenital fusion likely are from Trisomy 18. The reason you see her head tilted to the right in many of her pictures, is not because she can't hold up her head, it is because she is trying to adversely correct the abnormal direction her spine is curving. The extensively intensive spine surgery will be to guide the life threatening spinal curvatures that are a result of her lack of oxygen (neuromuscular complications). I will most likely post pictures of her spine and corrections in a diary like form as we continue this journey. Please continue to pray for guidance and comfort, as we continue down this terrifying journey. God's Blessings unto you!
I am hesitant to post pictures publicly of her spine, because it is very distorted due to the prolonged anoxia/lack of oxygen (when she passed away for 32 minutes). Just know that her spine is severely affected, and is compromising her basic organ functions. Her 3 life threatening spine deformities (Kyphoscoliosis, Scoliosis, and Lordosis) have nothing to do with Trisomy 18, however, her recently diagnosed spina bifida and small congenital fusion likely are from Trisomy 18. The reason you see her head tilted to the right in many of her pictures, is not because she can't hold up her head, it is because she is trying to adversely correct the abnormal direction her spine is curving. The extensively intensive spine surgery will be to guide the life threatening spinal curvatures that are a result of her lack of oxygen (neuromuscular complications). I will most likely post pictures of her spine and corrections in a diary like form as we continue this journey. Please continue to pray for guidance and comfort, as we continue down this terrifying journey. God's Blessings unto you!
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