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Actual Journal Entries from Neely's MomArticle posted on Monday, May, 24th, 2010 at 5:53 pm
On May 15, 2009, my 2 year old daughter Neely caught a virus that triggered an immune disorder. In less than 12 days she went from a healthy toddler to a heart beat and a shollow breath. Our pediatrician at the time did not meet our expectations for care. I don’t think they were listening to me, they did not refer us to a specialist, and they kept sending us back home insisting that it was just a virus would work itself out. I believe they were wrong and it almost cost us our daughters life.
We have often shared her story, but never shared the details of those first days. I decided to publish these excerpts from my personal journal so that other parents might benefit from the lessons we learned. Knowledge is Power! Make sure you know your doctor and know what to look for when you are choosing a pediatrician. If you are a parent, you NEED to read this.
Virus Started with Fever (never above 102) and vomiting.
Seems like a typical virus. Didn’t go to the Dr (Christie Pediatric Group, Greenville,SC) – going to watch Neely through the week-end.
Fever and vomiting, seemed to feel better in the afternoon, played a little
Fever (sporadically) and vomiting continued
1st Appt with Christie Pediatric Group, Greenville, SC
Neely was seen by Dr. Kevin Springle, He took a throat culture, said her throat was slightly red, but he said that she just had a virus. He said she should be feeling better within 12-24 hours. Since it started on Friday we should be through the worst of it.
Neely still has fever and vomiting. The fever comes and goes but never gets higher than 102. She seemed to feel a little better in the afternoon – wanted to play a little. But because of the remaining fever I called Christie Pediatric Group again that night. They said to bring her back into the office on Wednesday morning for a check.
2nd visit to Christie Pediatric Group.
Neely was seen by Dr. Kevin Springle. He took a second throat culture (which he said was negative) and prescribed zofran for vomiting. Neely had 1 fever spike (to 101) today and the vomiting continued until mid-afternoon when the zofran began to take affect.
She played a little in the afternoon but seemed very weak and tired. She mostly stayed in bed and watched cartoons. She isn’t walking and is showing limited arm movement.
Tonight I called the Christie Pediatric Group to say she was not getting better and had another fever spike. My call was returned by Dr. Pamela Shivers. I shared Neely’s recent history with her and she said if the fever continued/came back that I should bring her into the office on Thursday to be checked again.
Neely developed a fever at Noon. Jamie took her into the office shortly after noon. The receptionist said that all of the Doctors were in a meeting and that Neely would not be able to see a Dr. that day.
She offered him an appt with a nurse – but he would have to wait as long as 2 hours for that appt.. Neely was to sick to sit in the waiting room and wait for 2 hours just to see a nurse – so he left.
When Jamie told me that they had turned him away – I was outraged so I called the Christie Pediatric Group at 5:00pm and talked to the answering service. I received a call back from a nurse. (the nurse said she had consulted with Dr. Jeffrey Stoeber) The nurse scheduled an appt for Neely at 8:40 am the next morning (Friday) with Dr. Kevin Springle. I told the nurse about Jamie being turned away. She apologized.
The Nurse Office manager (Brenda Standridge) called me back within 5-10 minutes. The first thing she said to me was that she had checked with her staff and that Jamie was NOT turned away. Brenda Standridge said that he was never told that Doctors were unavailable nor that Neely would not be able to see a Dr. She said “I have even checked with a nurse that was standing near by who agreed with the receptionist.” Not once (In my opinion) did she ask about or seem concerned about Neely’s condition. Brenda (the office manager) kept me on the phone for approximately 10 minutes. She said things like,
I’m sorry this happened Mrs. Thompson, but do you see that you should have called to set up an appt.
I’m sorry but, Mrs. Thompson, can you see that we couldn’t have known the patients fever was going to spike.
Brenda never once referred to Neely by name and even called her by the wrong name at one point. In my opinion, Brenda Standridge, her/Christie Pediatric Group office staff, and the Dr. on call that night (Dr. Jeffrey Stoeber) demonstrated a lack of concern for Neely’s health and well-being. I believe they are minimizing her symptoms.
Neely’s conditioned worsened through the night.
I arrived for Neely’s 3rd appt with Christie Pediatric Group at 8:40.
Neely was extremely lethargic, had stopped talking and walking. She could stand with assistance. Her last fever was Thurs at Noon and her vomiting had not returned since Wed.
Dr. Kevin Springle’s first words to me as he entered the exam room were not about Neely – he said, “I’m sorry about all that stuff that went down yesterday.”
He said it seemed odd that the receptionist would have turned Jamie away because they always have a Dr. on call.
At the time, I was so overwhelmed with worry for Neely that it didn’t’ occur to me how inconsiderate and inappropriate it was for him to make the “Thursday incident” his priority. Again, I feel like he was underestimating the severity of Neely’s symptoms.
After we briefly discussed Neely’s condition – He sent us to Patewood to have blood work done –all the while assuring me that he felt confident this was JUST a lingering virus and that Neely should be feeling better by the end of the week-end. During the conversation I felt that he was very hesitant to take the next step and seemed to be cautious about running any tests. At one point I said to him….. “I am not concerned about cost or time – why do you have hesitation about running additional tests? There is something wrong here that you are missing – Try harder!”
Before I left the Christie Group office, I requested the medical files for both Neely and Ava with the intent of finding a new pediatrician as soon as we saw this through.
After blood work: Dr. Springle called to say “It’s just a virus” and that it would pass in time. (that was in the early afternoon) I called Christie Pediatric Group again on Friday evening because Neely was worse – not better. He said he felt like we should start to see some improvement by Sunday.
Called Christie Pediatric Group early in the am. Neely is not any better and is getting worse. She is still not talking or walking, She is moaning and crying (not a normal cry….could be pain) Her arms seems to go to her stomach but she doesn’t have great control over her arms so I am not sure if her stomach hurts or if her hands are just naturally falling there. Dr. Springle said to try giving her Mylanta and to wait until 11:00am to see if she feels better. He said he believed that she may just be having gas pains and that the Mylanta would relive it. Then he called back (after only about 15 minutes), he had Jamie examine her stomach. And told us to wait until 2:00 to monitor her improvement – then call him back.
I told him that I felt like there was something seriously wrong and that he was missing….I told him to try harder and asked what other tests we could run to find the source of the illness.
Jamie and I ignored his request to wait until 2:00 and took Neely straight to the ER. They started an IV (fluids only). Results from the blood work on Friday came back negative for infection. We kept insisting that something was wrong and asked what other tests we could run. Neely was lethargic, unresponsive, eyes closed, moaning and crying. Appeared to have some pain and was extremely weak.
We had given her a bath earlier that day to make her feel better….It was like bathing an infant. She could not hold her head up and was limp in my arms as I dried her hair.
No visual improvement from Neely today. (Other than her coloring looks better – probably from receiving IV fluids) There is no walking, no talking, and no activity. She is drinking Gatorade.
Neely was given Prevacid and a laxative. More blood work was ordered. Dr. Springle seemed hesitant to do any additional tests. Jamie and I kept asking if there were any other tests that we could run to rule out any serious or life-threatening or life-altering conditions that could be a cause of the symptoms she had. Dr. Springle told us that it was just a virus and that he didn’t see a need to run any other tests. We asked about doing a spinal tap and he said he WOULD NOT do a spinal tap because she did not show signs of meningitis.
We told him that we were not ready to leave the hospital and we wanted her to continue to be monitored.
Neely showed some positive signs that evening. For a few brief moments she smiled at her dad and me. She giggled a few times (still no talking) and we saw a few familiar facial expressions. Maybe this is a sign that she is starting to get better. Could the IV fluids have made this much of difference for a child whose blood work didn’t even indicate dehydration?
5/25/09, Monday – Memorial Day
Neely appears to be getting some strength back today. Her skin color looks good too. The nurse (Pam Henderson) said that is probably from the IV fluids. Pam Henderson (the charge nurse that day) seemed concerned about Neely’s lethargy. (as were we) She validated our desire to have the CT scan. Neely still isn’t sitting, walking, or talking. She has not had a BM since Sunday when it was induced.
We asked Dr. Kevin Springle if her current symptoms could be a result of her near-dehydration and sickness. We have never had a child that was sick for that long. I asked him is the lethargy was typical for a child that had been so sick. He said it could be. He said that she should start to walk and talk once she gets her strength back. He said “these things have a way of working themselves out” I asked him to check her eyes because they seemed to be really dilated and looked glassy/empty. He said they were fine.
We again asked Dr. K. Springle if there were any additional tests available to us to run on Neely to be sure that there was nothing else going on. He said “No” that we had done everything except a spinal tap and he didn’t think that test was necessary because she did not show signs of meningitis. He wrote a prescription for prevacid (because her stomach had been empty for so long) and we were home by noon.
Neely did not make any progress during the afternoon. She just lay in bed, cried periodically, and became more lethargic. There appeared to be less and less movement.
We called Christie Pediatric Group, Dr. Springle, to tell him that Neely’s symptoms had worsened. He was not on duty so Dr. William L Wylie, also of Christie Pediatric Group (Greenville, SC) returned our call. Dr. William L Wylie cut me off several times before I could completely describe her symptoms (before I could finish a scentence. He said Dr. Springle had “gotten him up to speed” on her symptoms and reiterated that all of her blood work had come back normal. Dr. William L Wylie indicated that typically appetite and activity level are the last things to come back and that I should be patient because these things have a way of working themselves out. He told me to watch her through the night and take her into the Christie Pediatric Group office in the morning. The symptoms I described to Dr. William L Wylie were: clinched hands, dilated eyes, blank stares, increased lethargy, and limited movement of arms.
I called back an hour later to tell him the symptoms were not improving and seemed slightly worse in that she was less responsive. I had to call twice and wait for more than 50 minutes before he returned my call. Dr. William L Wylie was extremely short with me and cut me off before I could even get the first sentence out. He said “Why don’t you just go ahead and bring her into the ER and get her checked out if it will make you feel better, ok?”
I felt that he was very patronizing and seemed annoyed by my concern. According to the check in desk at the ER, He did not call to let the ER know that we were on our way.
When we arrived at the ER. The ER Doctor ordered films of Neely’s chest and stomach and a CT scan. We were admitted to the 6th floor. We inquired about how to “fire” the Christie Pediatric Group at that time. We did not want them to continue treating Neely. We got the impression that we would be able to get admitted quicker if we allowed the Christie Group to go ahead and admit us to the hospital. In an effort to get things moving faster – we let Dr. William L Wylie admit us. Before we left the ER, I also asked the ER Dr. if we could request a consult with Dr. Morales. We wanted Neely to see as neuro-pediatrician. (We had done the research that afternoon to find out who we should ask for.) The ER Dr came back to tell us that Dr. W. L. Wylie had made the phone call to Dr. Morales. (This was the first time that any Neuro-ped was consulted – to our knowledge)
Before 1:00 am, Dr. Morales had ordered blood work, and MRI, and a Spinal Tap. The tests were scheduled. The tests were scheduled for Wed. am. Neely could not walk, talk, or move from the neck down. She could barely move her head from side to side and could not close her eyes on her on. Her eyes stayed open all night. She was breathing on her own, and her heart was beating on it’s on….but that was all. That night in the hospital room – shortly after being admitted, Dr. William L Wylie came to see us in Neely’s room. He said he didn’t like to keep patients in the hospital for things that could be taken care of at home. He said as soon as we get to a point where Neely wasn’t getting anything in the hospital that we couldn’t do at home…..he would send us home. He said again that “these things have a way of working themselves out.” He said that her condition was not life-threatening.
I’ve never been more afraid in my life than I was last night. Everytime the nurse entered her room last night she would ask “Has she closed her eyes.” ……What are we going to do? Is she going to make it? God, help us!