May 1, 2012 was the start of a week which would forever change our lives. Gabby was a vivacious, funny, and smart five-year-old girl who loved cupcakes, animals, and spending time with her family. She had the sense of humor of an adult, and was the most kind, caring, and loving child. Gabby was so happy to love and to be loved. She adored her pet Chihuahua Bella, and enjoyed hanging out with her sisters, Nina who was seven at the time, and Sophia whom was thirteen at the time. Her smile was contagious and could light up a room. She had a full, promising future ahead of her until an untreated infection, which should have been caught and treated, led to sepsis and septic shock, and ultimately took her life on May 11, 2012.
Gabby died from sepsis/shock due to untreated Rocky Mountain Spotted Fever, which comes from a tick bite. We never knew of a bite, were asked about bites, or saw any marks. Several doctors considered it during her illness at the first hospital, which was negligent in her care, but not one of them ever presumptively treated with the correct antibiotic which would have treated the RMSF.
On May 1, 2012 Gabby awoke early in the morning with a fever of 102.5. We were concerned she may have an ear infection so she was taken to see her pediatrician. Her ears looked fine and the doctor thought she may have strep throat. She did a rapid swab on her and it was negative. The swab was also cultured in the lab a few days later and grew out negative. We took her home and assumed she just had a virus. Later that afternoon on May 1, she complained of a headache. Her fever continued through the day, and reached 102-104 throughout Wednesday May 3 and she was also having nausea, and eating and drinking less. On the late evening of Wednesday May 2, I put her to bed about 9:30 p.m., and went to check on her fever and give more medicine at roughly 11:00 p.m. Her fever when I took it was 105 degrees and she had broken out in a red spotted rash all over her body. The spots resembled the chicken pox, or what looked like raised mosquito bites to me. They were sparse, but did cover all parts of her body including her palms and soles. The rash seemed to lose its color and disappear when the fever would decrease a bit. We immediately visited our local ER upon the fever reaching 105 and the rash appearing.
The local ER gave more fever reducer and got her fever down, and the doctor who saw her came in very briefly, and looked down her throat noting it was red and swollen. He said she had tonsillitis and that the rash was from the fever. He administered a shot of injectable Rocephin into each one of her thighs, and prescribed her an oral antibiotic. She was discharged home during the early morning hours of May 3 at roughly 3:00 a.m. By 8:00 a.m. she was covered in even more rash all over her body. The rash now looked spotted, red, and flat, and I couldn’t get her to eat anything but small bites of ice cream, and had her taken small sips of water. She was now complaining of abdominal pain. She still had a high fever of now 103-104. I phoned her pediatrician and informed her of our local ER visit and her new symptoms and was told that she would see her in her office. Upon seeing Gabby she said we could stop the oral antibiotic because this was not tonsillitis, chicken pox, scarlet fever, or the measles, and that she thought it was an atypical Coxsackie virus (meaning she didn’t show the classic symptoms for it). Gabby never complained of a sore throat or had any classic Coxsackie blisters in her mouth/throat. The pediatrician stated that the fever could get up to 105, and that the fever reducer may not bring it down, but just to keep her comfortable. She stated that Gabby should be fever free by Saturday May, 5 or Sunday May, 6, and asked if I would call with a status update on Saturday May, 5. She never stated if she still had a fever Saturday that she wanted to definitely see her back or that it may be something more serious, just to check in.
I took her home and kept her on the couch to provide comfort measures. She was complaining that her legs now hurt, but I thought that may be due to the injections she received. The next day on Friday May 4, she spent the day on the couch and was tired, lethargic to me, and her fever remained high 103-104. She got up for a bit and moved around, and the rash still seemed to fade when the fever came down a bit, but the fever never went away. On Saturday May 5, she remained home in the morning with her older sister while my husband and I attended our seven-year-old daughter’s first communion. I briefly checked her over, and gave fever reducer before we left the house at 9:00 a.m., and returned home at 12:30 p.m. I didn’t get to check in with the pediatrician, as I knew their office had closed at noon, and my thinking at the time around 11:30 when I knew they would be closing soon, was that I felt she was no better, but not critically worse, and that given the pediatrician had told us she could be fever free by Saturday, maybe Sunday I considered she may tell us she would see us on Monday morning since we were still in the timeframe for which she believed she would have a fever.
Upon arriving home from the pediatrician we noted she was agitated, and noticed that she was off balance when she walked. I knew when I was ill that sometimes I would feel a bit dizzy and off balance. She rested on a cot while we did a quick celebration for our daughter, and was only taking sips of water at this point. I knew because she hadn’t been drinking much that she wasn’t going to be going to the bathroom much. No one had talked to us about lack of urination, or lack of balance, or that we should even watch for changes in her rash or what to look for as danger signs.
At 9:00 p.m. on Saturday May 5, I took her fever as it was time, and it was at 106. My husband rushed home from work and we phoned the patient advisory nurse telling her we were bringing her to the ER of the hospital in the next city over, which is a level 1 trauma hospital! We got admitted, were seen by the head of Pediatric Critical Care, who checked her over and looked down her throat. I stated the pediatrician thought Coxsackie virus, gave her history, and said she didn’t have any blisters in her mouth though? He said she actually had one petechiae on the roof of her mouth, and we asked about IV fluids because we were worried about dehydration. He stated that you only need one to two teaspoons of water every 20 minutes to stay hydrated and that we could have IV if we wanted though, that it would be quicker…we of course said yes, and he ordered blood work. Upon arriving at the ER she had fever, her BP had an ! next to it (on the low side), and she hadn’t urinated in 23 hours at this point! She also had a slightly elevated HR. He went off shift and passed us to another doctor. The next doctor didn’t come in for six hours, didn’t re-examine her, and said she just had to urinate and could go home. My husband took her to the restroom where she urinated very little, and it was amber in color. This was after a bag of fluids. We didn’t know this was a bad sign that it was still darker, and there was still little output.
We showed continued concern over her rash and fever….the doctor said “what do you want, it’s a virus, and it’s going to take time.” He stated that fevers could get all the way to 110! We knew that was ridiculous and didn’t listen to that, but then asked about her blood work. The doctor said it “was all good.” My husband asked a second and third time and asked about the urine. He said it was all fine! The nurse stated the doctor had a reputation for being very blasé, and went over fever and discharge info. Upon being discharged her fever was climbing at 103, and she was tired and appeared lethargic. She was carried in and out of ER…they never asked if she could walk.
Sunday May 6, she slept most of the day and her fever oddly came down to 99. My husband complained about the ER doctor and I said he had an awful bedside manner, but did say that her blood work was fine. We took that as the ultimate reassurance. She was very irritable and agitated. The next day, Monday May 7, I phoned the pediatrician at 12:30 p.m. to tell her she was no better. Three hours later the nurse called my husband back and said we could bring her in today or tomorrow and the doctor thought that her lack of balance was due to decreased eating and drinking. I said I had read more on Coxsackie virus and that I saw where bad cases could turn into encephalitis…she noted that she didn’t think it was encephalitis, but couldn’t be sure without seeing her, yet there seemed to be NO urgency on her part! My husband asked of his own will…what about her labs from the Saturday ER visit? Did you get a copy and see those? The nurse stated that the doctor was looking at them and then my husband heard the doctor say “oh my god, her labs were awful. Tell them to get to ER right away, or call 911.” We took her right to ER. The doctor who discharged on May 5 from ER didn’t look at the labs I believe or maybe just her WBC which was 4, and barely normal. I think he saw that and thought he didn’t need to look at the rest based on that! The ER doctor is claiming he switched two of her numbers around, and that’s how he didn’t note she was so sick….but what about the other 17 abnormal numbers, and the result at the top of the page of labs that said abnormal??? Gabby in her vitals and labs was showing SIRS and sepsis, and they sent her home. Without her labs, she was even showing the signs of SIRS/sepsis.
She was admitted Monday May, 7 a week after she got sick with fever, and was not given IV antibiotics for sepsis for 7 hours after admittance, even though her labs from two days prior were awful, and her labs taken after admitted were now even worse, and had decreased by half of Saturday’s numbers. Her BP dropped, she started something called “third spacing” they said, and she was moved to SICU and given an internal line. Her HR, RR, and BP were all out of whack and come to find out later the first hospital asked certain questions which we didn’t know at the time were related to tick bites, and they thought of tick borne illness in their differential, but not one of them treated her with the drug to treat it…Doxycycline. She had a spinal tap which looked ok, and a CT scan. We asked the night she was admitted if we should move her to Peoria..the children’s hospital. They stated they didn’t think they would do anything different at that time, but that she could get much sicker before better. They were not equipped, now we know, and should have known they weren’t equipped, and should have moved her.
The first hospital doctors never communicated the real seriousness of her condition to us, nor EVER mentioned sepsis to us. My husband overheard the doctor saying they thought Gabby was septic, and then he told me and then I asked the doctor. Even then there was NO urgency shown by the doctors or nurses. Tuesday May 8 shortly after midnight, in the morning hours of May 8, she became very unstable…even though she had been in what we now know was respiratory distress all day, and they wanted to intubate. We were kicked out, and it took them over an hour to intubate? We believe the doctor didn’t know what she was doing and may have over medicated her, as when we got back in she was puffy and swollen…something didn’t seem right? Gabby was then air flighted to another children’s hospital. They were wonderful, had a team of pediatric specialists, and asked the same questions, but knew their protocols and started her on Doxy for Rocky Mountain Spotted Fever, which they thought she could have. More importantly they had an ID doctor which the first hospital never bothered to consult with one despite knowing she had been wrongly discharged home from their ER, and had failing numbers when she finally got admitted back in. Gabby was put on ECMO, plasmapheresis, an oscillating ventilator, more antibiotics, and she was swollen and her lungs filled with fluid. They did an abdominal incision to release the abdominal fluid, and the kidneys started producing again. As a result of the untreated Rocky Mountain Spotted Fever, she then developed SIRS, sepsis and then shock. She also developed acquired Hemophagocytic lymphohistiocytosis (HLH) due to the sepsis, and ultimately she ended up with brain swelling which cut off flow to her brain….I was horrified when we were told she had no more brain function.
The first hospital sent her home with SIRS/sepsis in which she then lost almost two days of critical time in getting treatment and supportive measures. Her SIRS/sepsis was missed because the doctor didn’t properly look at labs and certain vital signs were ignored which I believe should have been red flags…red flags which I was not aware of at the time, but sadly now we know. Looking back we also now know that she had some blood blister type marks included in her rash when she visited the ER that night, but we didn’t notice them, but the doctor should have when examining her rash, and that is a life threatening sign now we know…why didn’t the doctor who was the head of Pediatric Critical Care note these?? We are still baffled at the incompetence that we now know what took place.
After Gabby died we learned that her pediatrician on day three of her illness, after we left her office, she dictated that she “didn’t think Gabby had Rocky Mountain Spotted Fever,” however she didn’t ask me about it, tell me about it, have her nurse phone me about it, nor did she get a history from me regarding tick exposure or possible exposure. She said it was impossible that she thought she had it, but admitted she didn’t know her facts in 2012 on it!?? She wasn’t treated for sepsis in a timely fashion once admitted at first hospital, and wasn’t intubated, nor had her airway protected like someone with sepsis should…her death was 100% preventable. The pediatrician also said she saw Gabby’s labs as of Monday morning, the day I finally called in at 12:30 p.m., but she felt “it was important to go on with her other patients and that she would come back to Gabby’s labs, and claimed she asked a nurse to call us in to be seen, but as of 12:30 p.m., NO ONE had phoned me! She never called the ER to say we were bringing her back, nor did she ever look in the computer, nor call to the hospital doctors to check on her status after Gabby was admitted! She only phoned Peoria after she saw that Gabby had been discharged/transferred from the first hospital, and was sent a summary and then went in to a panic about how she saw the doctor at the first hospital considered tick borne illness and that we needed to make sure we asked Peoria about Rocky Mountain Spotted Fever….they had already started her on it!
The negligence and mistakes started with the pediatrician on day three and continued to the ER doctor on Saturday, and the negligence now we know continued on until she was air lifted out! We shouldn’t be visiting a cemetery every day. Our surviving children have lost the parents they once knew, and have lost their innocence. The doctors and hospital (first one) have taken no accountability and no one wants to be honest we believe. Our child is gone forever…aren’t we owed some answers at least, some honesty!