Help with medical expenses
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My precious family is in a state of crisis and we need help now.
My 15 year old daughter, Malia, has been in the hospital since March 16, 2018. Her case is complicated, I will do my best to explain what is going on. First, three years ago Malia was diagnosed with a rare autoimmune disease called Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS). The disease is in both of her legs making it impossible for her to bear weight on her legs and has been in a wheelchair for the past two year. Her left ankle is the worse, it is locked and will eventually require surgery to correct. Malia has also had issues with her stomach that could be tied to her RSD. On top of all that, Malia developed a fungal infection in her esophagus and stomach causing nausea and making it nearly impossible to eat. She lost 30 pounds in about 2 to 3 months. Of course, the medication didn’t work on the infection. Malia is the 0.01% of the population that doesn't respond to the first medication. Since she was losing so much weight so fast, her GI doctor admitted her to the hospital to do IV antifungal medication (a 3 week course of treatment). Since Malia was still vomiting and not able to eat much at all, they put in a feeding tube and for about a day and a half with the feeding tube, she was looking better.
Her GI doctor did a colonoscopy and endoscopy on the 23rd of March to determine if the infection was still there and to rule out any diseases like Crohn's Disease (which I have). You need to drink a nasty prep the day before the procedure to clear everything out of the colon so the doctor can see everything. After 1 gallon of the prep being fed through the feeding tube, she didn't poop at all. So they gave her another gallon. They were able to do the procedure, the doctor saw inflammation in the esophagus and stomach and her colon looked healthy. However, after two gallons of the prep, she still had Barium in her colon, which is contrast they had given her for a CT scan a week ago! That shows that she has gastroparesis, which is slow motility in the GI tract. It explains why she vomits so much, always feels full, and has a hard time eating. This could mean that the RSD in her legs has spread to her GI tract, which is common but terrifying.
That night and into the next day, Malia’s heart was not doing good, but I didn’t really understand what was going on and how serious it was. They moved her into a different room, so that she could be hooked up to the heart monitor that the nurses can monitor from the nurse’s station. I still didn’t realize how sick she was. On the 27th, Malia vomited and then complained of a headache. She said it was as bad as when she had meningitis a few years ago. After that, things went bad fast. Nurses were rushing around and then I knew things were getting serious. They called for an adult rapid response team so that the adult ICU doctor and nurses would come. This was the scariest moment of my life. There were probably 20 people that came. Even though Malia has a central line, they needed an IV open and they had a really hard time getting the IV started. They places defibrillators on her chest. Doctors were giving orders and nurses were rushing around. It was a nightmare. Her blood pressure was super high, her heart rate was very low and she was having a heart rhythm problem called long QT syndrome. Giving high doses of magnesium were given and it corrected the heart rhythm. Things settled down, she was stable for a few hours. She had another episode in the middle of that night. For the next week, Malia pretty much only wanted to lay in the dark room and not talk or watch TV or anything. She wanted me there holding her hand the entire time.
Medications that Malia has been on may have contributed to this heart problem occuring. Her electrolytes have been very low and they can’t seem to keep her magnesium levels normal. She is getting 4 times the normal dose for an adult and her levels will drop too low. So it’s a waiting game right now, waiting for test results and waiting for the medications she was taking to completely leave her system. Again, this could be a side effect of a different medication she was on, that occurs in 0.01% people. The doctors are still trying to figure out why this is happening, it could be a genetic defect.
Doctors think she will in the hospital for a few more weeks. The end goal is to be off the nutrition going through her IV, for her to gain weight, and be able to eat real food without vomiting. We are waiting for the results of some genetic testing that may take a few weeks. We are also working with social workers to get her referred to a hospital on the mainland to address the RSD.
During this time, my daughter Kaili had her 11th birthday and my sister had her first baby on Kaili”s birthday and there was Easter, I am a single mom. I have my own incurable chronic disease to deal with. I haven't been able to work since she has been here and there are medical expenses. I am usually embarrassed to ask for help, but my family NEEDS help right now. Prayers, cards, well wishes are all appreciated. If you are able to help financially, please do, so that i can focus my energy on getting Malia ready without having to worry about work. Please know that everything is appreciated, no matter how small or trivial. It's really hard for us to keep our spirits up and we have a long road to recovery before us.
My 15 year old daughter, Malia, has been in the hospital since March 16, 2018. Her case is complicated, I will do my best to explain what is going on. First, three years ago Malia was diagnosed with a rare autoimmune disease called Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS). The disease is in both of her legs making it impossible for her to bear weight on her legs and has been in a wheelchair for the past two year. Her left ankle is the worse, it is locked and will eventually require surgery to correct. Malia has also had issues with her stomach that could be tied to her RSD. On top of all that, Malia developed a fungal infection in her esophagus and stomach causing nausea and making it nearly impossible to eat. She lost 30 pounds in about 2 to 3 months. Of course, the medication didn’t work on the infection. Malia is the 0.01% of the population that doesn't respond to the first medication. Since she was losing so much weight so fast, her GI doctor admitted her to the hospital to do IV antifungal medication (a 3 week course of treatment). Since Malia was still vomiting and not able to eat much at all, they put in a feeding tube and for about a day and a half with the feeding tube, she was looking better.
Her GI doctor did a colonoscopy and endoscopy on the 23rd of March to determine if the infection was still there and to rule out any diseases like Crohn's Disease (which I have). You need to drink a nasty prep the day before the procedure to clear everything out of the colon so the doctor can see everything. After 1 gallon of the prep being fed through the feeding tube, she didn't poop at all. So they gave her another gallon. They were able to do the procedure, the doctor saw inflammation in the esophagus and stomach and her colon looked healthy. However, after two gallons of the prep, she still had Barium in her colon, which is contrast they had given her for a CT scan a week ago! That shows that she has gastroparesis, which is slow motility in the GI tract. It explains why she vomits so much, always feels full, and has a hard time eating. This could mean that the RSD in her legs has spread to her GI tract, which is common but terrifying.
That night and into the next day, Malia’s heart was not doing good, but I didn’t really understand what was going on and how serious it was. They moved her into a different room, so that she could be hooked up to the heart monitor that the nurses can monitor from the nurse’s station. I still didn’t realize how sick she was. On the 27th, Malia vomited and then complained of a headache. She said it was as bad as when she had meningitis a few years ago. After that, things went bad fast. Nurses were rushing around and then I knew things were getting serious. They called for an adult rapid response team so that the adult ICU doctor and nurses would come. This was the scariest moment of my life. There were probably 20 people that came. Even though Malia has a central line, they needed an IV open and they had a really hard time getting the IV started. They places defibrillators on her chest. Doctors were giving orders and nurses were rushing around. It was a nightmare. Her blood pressure was super high, her heart rate was very low and she was having a heart rhythm problem called long QT syndrome. Giving high doses of magnesium were given and it corrected the heart rhythm. Things settled down, she was stable for a few hours. She had another episode in the middle of that night. For the next week, Malia pretty much only wanted to lay in the dark room and not talk or watch TV or anything. She wanted me there holding her hand the entire time.
Medications that Malia has been on may have contributed to this heart problem occuring. Her electrolytes have been very low and they can’t seem to keep her magnesium levels normal. She is getting 4 times the normal dose for an adult and her levels will drop too low. So it’s a waiting game right now, waiting for test results and waiting for the medications she was taking to completely leave her system. Again, this could be a side effect of a different medication she was on, that occurs in 0.01% people. The doctors are still trying to figure out why this is happening, it could be a genetic defect.
Doctors think she will in the hospital for a few more weeks. The end goal is to be off the nutrition going through her IV, for her to gain weight, and be able to eat real food without vomiting. We are waiting for the results of some genetic testing that may take a few weeks. We are also working with social workers to get her referred to a hospital on the mainland to address the RSD.
During this time, my daughter Kaili had her 11th birthday and my sister had her first baby on Kaili”s birthday and there was Easter, I am a single mom. I have my own incurable chronic disease to deal with. I haven't been able to work since she has been here and there are medical expenses. I am usually embarrassed to ask for help, but my family NEEDS help right now. Prayers, cards, well wishes are all appreciated. If you are able to help financially, please do, so that i can focus my energy on getting Malia ready without having to worry about work. Please know that everything is appreciated, no matter how small or trivial. It's really hard for us to keep our spirits up and we have a long road to recovery before us.
Organizer
Amy Williams-Webb
Organizer
Waialua, HI
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