Breanna's Final Wishes
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Breanna, age 23, has Gastroparesis. In short, Breanna's digestive tract is not functional.
Therefore, a TPN is administered into a vein as a central line to get nutrition into her (other than her digestive tract). This has caused repeat blood stream infections. She has had Sepsis 10 times and she also has a condition that causes her to have low hemoglobin levels every 1-2 weeks and requires 2-3 units of blood each time. The doctors don’t understand why this is happening. She has a GJ tube in her abdomen which flipped preventing her from taking her medication and requiring her to make an immediate trip to UC Davis. The doctors have told the family that this is her last central line.
If this line fails, she will not have the option of another line, therefore she will be unable to receive new blood, which is vitally important to her survival. As I type this, she is at the ER at UC Davis having this line checked out, as she is having pain, and that is not good.
Breanna and her family are hoping and praying for a miracle! But in case that doesn’t happen, they are preparing for the worst by trying to get the absolute most out of her remaining time and trying to fulfill her last bucket-list items as soon as possible. That’s where we need your help! She told her mother that One of her wishes was to go to Hawaii But she is too sick to make that dream a reality. But what her Mother and I are trying to do is secure a more local beach and throw a luau for her. We need funds for the actual luau, as well as food and lodging for her and her immediate family.
Her other wish is to ride in a Hot-Air Balloon, so we are also trying to make that happen. We would like to raise enough money to send the family up in the balloon with her.
Any money that you can donate is greatly appreciated and although the amount we are asking is more than these two wishes will cost, we are asking for the higher amount to help cover the extensive medical costs and impending future expenses.
Thank you, thank you, thank you for your support.
The following is a note from Breanna explaining her situation in more detail:
About me:
I was diagnosed with Congenital Kypho-Scoliosis with hemivertebra at age 11. The curvature of my spine continued to increase as I grew, and I first began to experience debilitating back pain around age 15. Pain severe enough to leave me in tears every night after school & “retire” from competitive softball, a sport I was passionate about and consumed by for nearly 12 years. I had a corrective spinal fusion surgery in August of 2012 (age 17) where my surgeon implanted 2 titanium rods and 20+ screws from T1 down to L3. About 3 months after the initial fusion I began to have severe myofascial pain under my left shoulder blade. After an entire year with that pain, I had a revision surgery where all of the hardware on the left side of my spine was removed (December 2013, age 19). After the revision surgery, that myofascial pain under my left shoulder blade was gone entirely. However, 6-9 months after the 2nd surgery, I began experiencing GI issues which were very mild at first but rapidly progressed in the following 6-9 months. I went from a normal, regular diet (Nov. 2014), to a soft solids/easy to digest diet (Feb. 2015), to a full liquid diet (April 2015), to only being able to tolerate clear liquids (July 2015). I had lost 30-35lbs in this time span and I was going into the Emergency Room at least once a week for IV fluids and vitamin replacements due to the chronic dehydration and malnutrition. I was only able to take in about 500 calories (on a good day) which was when my frequent episodes of syncope began.
This trend continued until the end of September 2015 when I was finally admitted to UC Davis Medical Center, with a BMI of 14 and kidneys and heart both showing signs of distress. This is when they ran a battery of tests and I received the diagnosis of Gastroparesis, Median Arcuate Ligament Syndrome, and Superior Mesenteric Artery Syndrome. They placed an NG tube for tube feedings which quickly failed due to the paralysis of my stomach. They placed an NJ tube and initially I struggled with refeeding syndrome but after some time, I began tolerating the NJ feeds & then a GJ tube was placed as a more long-term solution to bypass my stomach completely & feed into my jejunum. This kept me stable for a couple of months but by January 2016 the NJ feedings had also begun to fail. I was constantly nauseated, vomiting, dry heaving, experiencing painful distention and bloating, and began losing weight again. At this time I was diagnosed with failure to thrive, pancreatic insufficiency, and in addition to the gastric paralysis, my small and large intestine both showed signs of little to no motility. Later confirmed with extensive testing.
February 2016 I was admitted to UC Davis again, with “gastrointestinal failure”. At this point my only treatment option was to get a central line placed and start TPN. The TPN was originally only supposed to be given for a month or two during gut rest but I have been unable to tolerate any formula via GJ tube or any oral intake. It has been almost 3 years now on TPN but I have only continued to decline. I have been hospitalized for Sepsis 10 times, 2 of which were Septic Shock. After my most recent episode of sepsis (May 2018) we were told I am out of access sites due to scarring and thinning of major veins & that placing another central line would be nearly impossible. I have constant abdominal pain, constant nausea, vomiting multiple times a day, and all over musculoskeletal pain and weakness that has been slowly progressing over the past year. I was awaiting full genome sequencing which my geneticist ordered for what she strongly believes is a variation of Mitochondrial disease. Insurance has denied this testing twice because they claim the results would not change my treatment options (or lack thereof).
Since an admission in November 2017 when I fought both bacterial and fungal sepsis, I have required blood transfusions every 7-10 days and no doctor has been able to explain why. My iron levels remain stable and we have ruled out a GI bleed multiple times, but my hemoglobin sits at a 9-10 but then drops to 7 or below in a matter of 24 hours. 2 units of blood usually lasts 8-9 days & each additional unit adds on 4-5 days to the length of time that passes before my hemoglobin dips again and I find myself in the ER or an infusion clinic.
Diagnoses
Gastroparesis, Intestinal Dysmotility, Chronic Abdominal Pain, Malabsorption, Pancreatic insufficiency, Small Intestine Bacterial Overgrowth, Chronic Nausea & Vomiting, Erosive Esophagitis & Gastritis, Gastric, Small bowel, Colonic, and total gut severely delayed transit time, Gallstones, Superior Mesenteric Artery Syndrome, Median Arcuate Ligament Syndrome, Failure to Thrive (Oral intake/Gastric feed/Jejunal feed), TPN Dependent, Iron deficiency, Chronic Fatigue, Postural Orthostatic Tachycardia Syndrome with Syncope, Chronic Dehydration, Insomnia w/Night Terrors, PTSD, Medical related Anxiety, Autonomic & Peripheral Neuropathy, Post-Surgical Guillian Barre Syndrome, Congenital Kypho-Scoliosis, Chronic Back Pain (post-surgical), Mast Cell Activation Syndrome, Hemolytic Anemia, chronic migraines, Musculoskeletal pain & generalized weakness, Wheelchair dependent.
Therefore, a TPN is administered into a vein as a central line to get nutrition into her (other than her digestive tract). This has caused repeat blood stream infections. She has had Sepsis 10 times and she also has a condition that causes her to have low hemoglobin levels every 1-2 weeks and requires 2-3 units of blood each time. The doctors don’t understand why this is happening. She has a GJ tube in her abdomen which flipped preventing her from taking her medication and requiring her to make an immediate trip to UC Davis. The doctors have told the family that this is her last central line.
If this line fails, she will not have the option of another line, therefore she will be unable to receive new blood, which is vitally important to her survival. As I type this, she is at the ER at UC Davis having this line checked out, as she is having pain, and that is not good.
Breanna and her family are hoping and praying for a miracle! But in case that doesn’t happen, they are preparing for the worst by trying to get the absolute most out of her remaining time and trying to fulfill her last bucket-list items as soon as possible. That’s where we need your help! She told her mother that One of her wishes was to go to Hawaii But she is too sick to make that dream a reality. But what her Mother and I are trying to do is secure a more local beach and throw a luau for her. We need funds for the actual luau, as well as food and lodging for her and her immediate family.
Her other wish is to ride in a Hot-Air Balloon, so we are also trying to make that happen. We would like to raise enough money to send the family up in the balloon with her.
Any money that you can donate is greatly appreciated and although the amount we are asking is more than these two wishes will cost, we are asking for the higher amount to help cover the extensive medical costs and impending future expenses.
Thank you, thank you, thank you for your support.
The following is a note from Breanna explaining her situation in more detail:
About me:
I was diagnosed with Congenital Kypho-Scoliosis with hemivertebra at age 11. The curvature of my spine continued to increase as I grew, and I first began to experience debilitating back pain around age 15. Pain severe enough to leave me in tears every night after school & “retire” from competitive softball, a sport I was passionate about and consumed by for nearly 12 years. I had a corrective spinal fusion surgery in August of 2012 (age 17) where my surgeon implanted 2 titanium rods and 20+ screws from T1 down to L3. About 3 months after the initial fusion I began to have severe myofascial pain under my left shoulder blade. After an entire year with that pain, I had a revision surgery where all of the hardware on the left side of my spine was removed (December 2013, age 19). After the revision surgery, that myofascial pain under my left shoulder blade was gone entirely. However, 6-9 months after the 2nd surgery, I began experiencing GI issues which were very mild at first but rapidly progressed in the following 6-9 months. I went from a normal, regular diet (Nov. 2014), to a soft solids/easy to digest diet (Feb. 2015), to a full liquid diet (April 2015), to only being able to tolerate clear liquids (July 2015). I had lost 30-35lbs in this time span and I was going into the Emergency Room at least once a week for IV fluids and vitamin replacements due to the chronic dehydration and malnutrition. I was only able to take in about 500 calories (on a good day) which was when my frequent episodes of syncope began.
This trend continued until the end of September 2015 when I was finally admitted to UC Davis Medical Center, with a BMI of 14 and kidneys and heart both showing signs of distress. This is when they ran a battery of tests and I received the diagnosis of Gastroparesis, Median Arcuate Ligament Syndrome, and Superior Mesenteric Artery Syndrome. They placed an NG tube for tube feedings which quickly failed due to the paralysis of my stomach. They placed an NJ tube and initially I struggled with refeeding syndrome but after some time, I began tolerating the NJ feeds & then a GJ tube was placed as a more long-term solution to bypass my stomach completely & feed into my jejunum. This kept me stable for a couple of months but by January 2016 the NJ feedings had also begun to fail. I was constantly nauseated, vomiting, dry heaving, experiencing painful distention and bloating, and began losing weight again. At this time I was diagnosed with failure to thrive, pancreatic insufficiency, and in addition to the gastric paralysis, my small and large intestine both showed signs of little to no motility. Later confirmed with extensive testing.
February 2016 I was admitted to UC Davis again, with “gastrointestinal failure”. At this point my only treatment option was to get a central line placed and start TPN. The TPN was originally only supposed to be given for a month or two during gut rest but I have been unable to tolerate any formula via GJ tube or any oral intake. It has been almost 3 years now on TPN but I have only continued to decline. I have been hospitalized for Sepsis 10 times, 2 of which were Septic Shock. After my most recent episode of sepsis (May 2018) we were told I am out of access sites due to scarring and thinning of major veins & that placing another central line would be nearly impossible. I have constant abdominal pain, constant nausea, vomiting multiple times a day, and all over musculoskeletal pain and weakness that has been slowly progressing over the past year. I was awaiting full genome sequencing which my geneticist ordered for what she strongly believes is a variation of Mitochondrial disease. Insurance has denied this testing twice because they claim the results would not change my treatment options (or lack thereof).
Since an admission in November 2017 when I fought both bacterial and fungal sepsis, I have required blood transfusions every 7-10 days and no doctor has been able to explain why. My iron levels remain stable and we have ruled out a GI bleed multiple times, but my hemoglobin sits at a 9-10 but then drops to 7 or below in a matter of 24 hours. 2 units of blood usually lasts 8-9 days & each additional unit adds on 4-5 days to the length of time that passes before my hemoglobin dips again and I find myself in the ER or an infusion clinic.
Diagnoses
Gastroparesis, Intestinal Dysmotility, Chronic Abdominal Pain, Malabsorption, Pancreatic insufficiency, Small Intestine Bacterial Overgrowth, Chronic Nausea & Vomiting, Erosive Esophagitis & Gastritis, Gastric, Small bowel, Colonic, and total gut severely delayed transit time, Gallstones, Superior Mesenteric Artery Syndrome, Median Arcuate Ligament Syndrome, Failure to Thrive (Oral intake/Gastric feed/Jejunal feed), TPN Dependent, Iron deficiency, Chronic Fatigue, Postural Orthostatic Tachycardia Syndrome with Syncope, Chronic Dehydration, Insomnia w/Night Terrors, PTSD, Medical related Anxiety, Autonomic & Peripheral Neuropathy, Post-Surgical Guillian Barre Syndrome, Congenital Kypho-Scoliosis, Chronic Back Pain (post-surgical), Mast Cell Activation Syndrome, Hemolytic Anemia, chronic migraines, Musculoskeletal pain & generalized weakness, Wheelchair dependent.
Organizer
Angels Among Us
Organizer
Yuba City, CA
