So, we’ve had many bumps in the road and would only want to pursue charges, if we knew they were intentionally harming someone. However, I understand that you do the best with what you have. Doctors are exhausted and overworked. They spend a large part of their days saving lives. Sadly, we’ve only come across THREE that I love and trust with my son’s life. I will check with them to ensure they are cool with me sharing their info, because as a stalker mom…. I would’ve paid out of pocket and driven my little boy across the country to finally find a doctor that was intelligent enough to figure it out and kind enough to respect my God-given intuition as to what I thought was going on!
My purpose of posting these, is that you NEVER give up and always SPEAK UP! I definitely need words of wisdom as to how, as I rarely got sympathetic responses.
Alright, here goes…
1.) The pediatrician asked me to take him to ER and ER doc gave multiple treatments of albuterol and said he couldn’t get his breathing under control. They asked us to stay the night. They also gave him oral steroids, which helped tremendously (but, I will share later why I hate them)! The first doc we saw upstairs asked me, “Why is he even here? He looks fine!”
2.) They gave him more albuterol, even though he was never in distress. When I questioned them (which you will see is a common thread that never went well for me), the respiratory therapist replied, “Do you want him to breathe or not?!”
3.) After 16 days of following their recommended “every 4 hours until he heals” dosage, I took a video of the distress it caused to the pediatrician (since every time I took him in during those days, they stated he looked great after the treatment and it was probably just bronchitis) and they immediately sent us back to ER suspecting that he had Pertussis. Even though he was vaccinated, never developed a fever or fatigue, no whooping sound, albuterol was effective at first, and never infected others, they insisted he had it because the video was “classic for pertussis.” They quarantined us and instructed us to administer antibiotics to our entire family and anyone he had come in contact with, including our 6 month old daughter.” They tested him and told us the results would be within a few hours. However, after notifying everyone that our son could’ve possibly infected them, we found out (only because I asked 3 separate employees for an update) that they sent home the lab workers because it was Christmas Eve! We asked to speak with the pulmonologist that was chatting in the hallway, but he said it was unnecessary as they know its Pertussis. Even my very sweet pediatrician gave her cell number ON CHRISTMAS EVE to speak with doctor and request a pulm consult. He still wouldn’t speak with us!
[wpvideo zNMkpzgt]
This video represents what we experienced every 4 hours for over two weeks! My parents were kind enough to take shifts with us, as he needed us to pound on his back to bring up vomit/mucus!
4.) It took them SEVEN days, many calls to hospital/ medical records/ pediatrician and lots of tears (yes, I cried) for the final results. They were negative! This time, they said they thought it was a false negative! The silver lining is that they told us to discontine Albuterol treatments. He improved within 7 days, which seems like a long time to experience his choking fits, but a blessing to us.
5.) Since it was negative and they couldn’t explain why he had these issues, they finally referred us to a pulmonologist. During this $500 visit, he “guaranteed” us that our son truly did have Pertussis! I asked for an emergency back-up since I struggled to believe it was Pertussis. He prescribed Albuterol and Flovent for asthma. He claimed that there is not an alternative to Albuterol, even though I expressed my instinct that my son was having a reaction to it. According to Mayo Clinic, “This medicine may cause paradoxical bronchospasm, which mean your breathing or wheezing will get worse. Paradoxical bronchospasms may be life-threatening. Check with your doctor right away if you or your child have coughing, difficulty breathing, shortness of breath, or wheezing after using this medicine.” He just replied that those were “just” symptoms of asthma.
6.) Each return visit began immediately with oral steroids and never airway clearance. I was told that a child shouldn’t receive more than TWO doses a year. My awesome pediatrician was at a conference that stated to be cautious prescribing face wash with steroids because it lowers their immunity. She called me on her way home, mentioned that she kept thinking of our son, and asked if we’d test his AM cortisol. We did and discovered his natural steroid production had decreased to a FOUR, when it should be above a 12. They said we could either give him MORE steroids and ween slowly for his hormone levels to rise or wait around 3 months for his body to recover naturally. Being that I’m very similar to Beverly Goldberg, I chose to hunker down, put him into a bubble, and not expose him to any germs… even airborne ones! In case you’re wondering, thats a LONG time to avoid school, church, grocery stores, playgrounds, restaurants, etc! 😉 It was worth it, as he increased after 2 months and was able to fight off germs. Super grateful to my parents that watched him any time we needed out!
7.) We returned to pulmonologist, only to be told our son has asthma and needs a higher dose of controller and MORE albuterol! I questioned this diagnosis as he was so confident about Pertussis at the last appointment. He replied, “I said that? No, he doesn’t have pertussis. It’s asthma!” I had typed out the summary of this situation (which was only 3 pages at that point of a daily log with proof of what happened after each dose) and when I pulled it out, he appeared annoyed and say, “Oh boy!” He asked if I believed my son was a zebra among the horses! He became distracted FOUR times during my summary, repeating, “Your son is coloring on himself!” I had finally taken the marker away and since that would’ve been out of character for him, I later checked to find NO markings! I had researched for many hours and discovered that Albuterol has the R isomer as a bronchodilator and an inert S isomer, which can cause irritation in some patients. I asked the doctor if this was a possibility. He said no because my son responded so well to the three back to back doses he gave during the appointment. I requested to switch to Xopenex, just in case that was the cause of distress. He asked if I wanted to switch because Albuterol makes my son hyper! Anyone that has met my son knows that that’s the least likely description. I understand I may have gone into way too much detail and bored him to distraction, but at $320, I’d hope he’d at least try to focus and understand my perspective and motherly instinct. He finally agreed to write a script for it, but as I picked it up, was told that insurance wouldn’t cover because the doctor didn’t deem necessary.
8.) I decided to pursue the asthma recovery and took my son to an allergist. He didn’t agree with my desire to have Nathan skin tested, stating that he has asthma and allergens are too difficult to avoid. I insisted on testing, which proved that he DIDN’T EVEN have allergies! Even though he agreed that his asthma “symptoms” are atypical, he suggested that we focus on the prevention measures of irrigation twice a day, switching to Asmanex instead of QVAR, and starting Dymista (which he asked for my husbands birthday and wrote the prescription out to him, stating that they won’t give to our son because of his young age)! 😮 He said that he agrees that our son was having paradoxical bronchospasms, but uncommon as they typically occur in African Americans or children with genetic mutations.
9.) Several doctors told me that he wasn’t having a reaction, he only worsened because I waited too long and he was having an asthma attack. So, I called his pediatrician and informed her that he coughed once, so I was going to give him a breathing treatment and need to be seen within 12 hours. She said not to worry and that she’d make an appointment the next day to check him. At 11 hours, we showed up there in full distress, to which they said I should’ve called 911 and that if oral steroids and back to back treatments didn’t help, they were calling an ambulance. As always, they worked and he walked out of there like it was a well visit!
10.) Several of the drugs they prescribed boldly stated, “Do not use of anyone under 4 years old.” To which, several doctors scuffed, “Oh, he’ll be fine!”
11.) When attempting to ween him from one of those “prevention” medications that obviously wasn’t preventing, he rebounded. However, rather than admitting that, they said he had another asthma attack and we needed to do yet another round of steroids, switch the type of breathing treatments, and INCREASE the prevention dosage.
12.) After that ER visit, they updated the discharge paperwork with the new medications. HOWEVER, they didn’t discontinue the old. So, if I were 90% of people who just follow directions given, I would have essentially been overdosing him, with several duplicates of different brands and dosage. For example, it said give Albuterol every 4 hours and Xopenex every 6.
13.) A random switch of patients (and patience), it was about this time I hit a breaking point when I couldn’t get out of bed, depressed, and sobbing. My family convinced me to speak with my doctor. He asked a few questions typical for depression and I “passed!” Without any further tests or evaluations, he wrote me a prescription for anti-depressants. Being on the other side of those torturous days, I’m glad I didn’t take it. They are intended to help with a chemical imbalance, not situational depression! I still believe it would’ve just taken some of my fight away, which would’ve extended his trauma by months… or even years!
14.) I had a timer set on my phone to remind me to make follow-up calls that exceeded my 3 day limit. Some places knew my voice and would sigh! I only let one go because it was for me and it’s now been 4 months without a return call… even though we had 5 conversations about a pre-approval letter for insurance. I even emailed her the form (found by typing “UHC prior authorization form” into google) because she claimed not to be familiar with the process…. even though that she was the same person they connected me to each time!
15.) Upon arrival to ER, I asked for a sinus xray, per request of our TN pulm. They forgot, had a do a few days later, and mentioned that he should’ve been on antibiotics for the sinus infection (that would’ve been found if they remembered to do the xray in ER).
16.) It took me requesting to discover that within 12 hours, they dosed him with 12 different medications AND regardless of previous discussion and argument about brochodilators, they came in for SCHEDULED Atrovent and were about to administer without informing me. What if I wouldve been in the restroom?! We would’ve started all over!!!! I decided while in ICU, he had enough support if he went into respiratory distress, I was 99% confident that the bronchodilators were causing the issue because of a malacia, and his only symptom at the time was coughing and uncontrolled wheezing. SO, I did the scariest thing I’ve ever done and denied anymore breathing treatments, unless it was an emergency. That was a big feat, but I still believe that God gave me that strength to fight everyone as it was what was truly best for my child. Talk about the overwhelming, painful, intimidating feeling of ME against the world! :/ Even though he never went into distress again, they tried FOUR more times to administer the treatments without my consent! Then, I would have to fight and defend my theory all over again! They claimed that it is protocol to give him a breathing treatment if he is wheezing. Each time, I had a different excuse as to why I was denying. The first was a series of questions to the ICU head doctor. I asked, “Are there any other issues that can cause wheezing?” She replied, “Of course.” I followed with, “You claim he was admitted because of bronchiolitis, yet it isn’t procedure to use bronchodilators with that diagnosis. Correct?!” She replied, “Yes, but it is on his order.” My closure, “Then, take it off his order. It is making him worse!” Next respiratory therapist comes in and starts the treatment. I jump up into attack position, like a cheetah and asked, “WHAT are you doing and WHY?!” He replied, “You son is wheezing and needs a breathing treatment.” I say, “You need to check the records because he is NOT to receive any treatments unless he is in distress.” He checks and says, “Well, it says PRN.” I reply, “Well, I’m deeming this ‘not needed.’” Another one tried the same thing while my mom gave me a sleeping break and ended up typing a bunch of notes about her! The next morning when they come in, they announce, “WOW, we are so impressed with his improvement!” URGH!
17.) The pulmonologist on call at the hospital was annoyed that I asked her for help turning off his breathing alarm (which went off every 10-15 minutes, but only I would panic), but told me to ask a nurse. She also sighed when I requested that we speak in hall to avoid waking my son who hadn’t slept well in days! She also kept looking at her watch during our consult, where she informed me, “Let’s just focus on getting him out of here and you can solve the big issue later.” If you are going to charge $46,000 to drug up my child and cause further harm, I feel like its only right to try to jot down some possible solutions.
18.) They tried to schedule bloodwork for 4am!!!! When she did come, she was shaking and asked for my help to remove and reapply turnicate. She removed the needle while looking away and blood sprayed all over my son and me. He had a huge bruise for a week and was traumatized for months, which was extra painful for me because he didn’t even cry at previous occurances.
19.) ICU increased oxygen because of stats. 20 minutes later, Respiratory Therapist lowered oxygen because of decreased wheezing, Pulm PA thought whining was grunting and asked nurse to increase, next RT took off ox! That roller coaster was all within ONE hour!
20.) Scheduled CT Scan for 1p, no food or drinks, but didn’t scan until 230.
21.) Told us if we didn’t sedate, could be discharged from ICU. Once we were rolled into room for scan, they insisted on sedation.
22.) Told us at 8am we could be discharged after ENT consult, however, we didn’t see him until 6pm. He informed us he needed to see all his normal office patients first. Wouldn’t hospital staff be aware of that? In the meantime, we asked if we could take my son for a walk and/or visit his favorite nurse in ICU and she said no because we’d miss our consult.
23.) Nurse seemed put off by helping us and didn’t even go through checklist from counter to help me. They probably had a red flag by my name at this point! 😉 We were on day 6!
24.) I requested records, but told couldn’t because that department closed! It would’ve been super helpful to know that ANY of the 6 days I was there. They didn’t even have the option to complete on the website or fax. I had to drive there to sign in person.
25.) Heads up: their ICU rooms don’t have beds or showers /toilets for parents! You have to leave your sick baby and go thru security doors each time!
26.) During another visit to ER, they tried to discharge once “looking better.” I explained after bronchodilators that he will improve immediately, but symptoms will worsen within hours. Luckily, it took them 3 hours to complete paperwork and they witnessed what I tried to explain so many times before. Did they believe me yet?! NOPE!
27.) A pulmonologist said, “I just don’t understand how he could improve immediately from bronchodilator, but worsen long term?!” Its sad that she didn’t realize that a malacia is a weakening of the airway and the BD will open the airway immediately; however, since its smooth muscle, it will weaken and flop closed once it wears off!
28.) Be cautious of pharmacies, as well! I caught one giving me incorrect dose, tried to show him, and he printed off script to “prove” me wrong (even after I pointed out that the date was a month before from a different diagnosis).
29.) And when getting bloodwork! We had to go back twice for the trauma because she didn’t know there was a second page!
30.) And when getting vaccines! I randomly asked if my daughter was getting the one for Chicken Pox because I remembered the pediatrician mentioning it. She took my signed permission slip back, brought me a new one, and casually said, “Oh, they were incorrect in the computer!” So…. were they about to give an entire incorrect batch?!
31.) Nurse called and said test results were normal. I picked up to add to my book and they were ABNORMAL!!!!
32.) At one of my appointments, she said I needed to get pneumonia titors, told them I already had them THERE, and she just replied that they couldn’t find.
33.) One of our pulmonologists found out we were “shopping around” and called me personally to see how “our little buddy” was doing. He hadn’t helped much in the past or responded to calls, but ready now and offered an airway clearance device I had been wanting for our son. He tried to offer sympathy and teach me something he found of “a site us doctors use to keep up to date!” I replied, “Oh, you mean ncbi?! I’m on that site every night!” He convinced me to keep appts with both pulms and guaranteed he’d help us. I get there for first appointment after lunch (recommended to avoid a wait), but still had to wait close to an hour. He didn’t have the device or even a diagnosis! He said that I’ve already ruled out all possibilities and that I need to take a break from trying to find a diagnosis and “see how winter goes!” He discredited every possibility I gave from different doctors. I asked about the bronchomalacias (WHICH HE DOES HAVE) that he agreed with my guess in July. He casually said, “He’s already been diagnosed that.” I asked for treatment and he replies, “Oh, he’ll just grow out of it. Stints are useless.” I asked for a CPAP setting to try for sickness and he said my son is too little and it will damage his facial structure. He said leg pains are not from singular (WHICH THEY WERE, as they started 2nd day and went away once he stopped taking) or low cortisol, but growing pains (even though his growth was delayed from all the inhaled steroids). He said he wanted my son to stay on all meds, even though it is WELL documented that bronchodilators make bronchomalacias worse! He agreed that he needs deep suctioned at hospital, but said he would let ER docs decide what to do. He spoke in words that even I didn’t understand after all this research. After putting his hands behind head, relaxing, and talking about how I need to stop worrying and try whiskey, I asked if he had other patients waiting and he laughed and said a few. I grabbed my son and said, “Come on, we gotta go so that he can help them.” He replied, “Its okay, I like to make them wait. They get feisty. I’m from Staton and like that. These moms are too passive aggressive for me!”
34.) While at the allergist for my daughter and me, they instructed me to lay on table and hold my 16 month old perfectly still on my chest for 15 minutes! She came in after and asked, “Was my paper this way or this? Yea, this is sesame. NO, it’s this one!” A few days later, they called with results to say my chest xray was clear. Ready for this?! I never had a chest xray! They said I’d received results Monday, Oct. 10 from Oct. 3 bloodwork, but had red flags on both of us and needed to wait for the doctor to call. I called back on the 12th, 13th, 14th, 17th to end up getting results from a nurse who still said she couldn’t give me my daughters on the 17th, even though they prescribed an Epi-Pen saying it was essential I carried with me at all times for her severe allergies!!! I asked my primary to request the reports and they sent the original order form with the tests were being administered!
35.) I received 3 different opinions on my diagnosis and was retested for anti-dna bc it was “either wrong or you’re very sick!”
36.) My son was given a diagnosis of significant GERD and prescribed top medicactions for over a month. At the follow-up appointment, the doctor walks in room and says, “How is he? Looks like all tests came back normal and he’s doing great!!”
37.) The infectious disease appointment took 4 months to get and he requested that I hand deliver all our sons records from each facility. Luckily, the sweet nurse at our pediatrician had access to all of them and copied to a CD. After driving downtown during rush hour and waiting 2 hours at his office, the doctor informed me he hadn’t had time to view those records, swore my son had asthma, and insisted we try DAILY bronchodiltors!
38.) At the geneticist (which was also viewed as a miracle to get into), she came in insisting that he had Primary Cilia Diskenga. She wouldn’t believe me that he had already been tested for that TWICE. She left the room to go check the computer, came back and said she found test results, but still asked me to test a third time. When I questioned my theory that CF carriers can have symptoms, she replied, “That’s not in the books yet.” I wanted to say, “Yes, but that $3,000 test you want to repeat IS actually in the books!” I ended up having the test performed, but only because it included a CF panel. Speaking of, that reminds me that she still hasn’t called us with those results and it’s been 3 months!
38b.) I decided to put it back on my list to call for results. I spoke with someone first thing Friday morning who informed me that the test results were in. She sounded frazzled and asked if she could put me on hold. She came back a few minutes later saying that she couldnt find a doctor to give me the results! From all my experience, I know thats not a good sign. She said she would find one and have them call me back right away. I even clarified, “So, are you saying within the next hour or by the end of day?” She repeats, “right away.” FOUR torturous hours go by without a call. I call again, but this time the operator directed me to voicemail…. like they know I might lose it! Ready for this, no one responds to the voicemails (yep, I left 3)! At 6p, I get a call from the doctors cell, to which she says, “I was told you wanted me to call you.” Then, a pause! I explain that I would really love to know if my son tested positive for CF, a life threatening disorder! Ready for this?! She asks, “Who is this? Is your son a patient of mine?” Followed by, “I dont have the test results. Let me grab them and call you right back!” Another shocker, she never called back. I texted her around 8 and asked, “Should I not expect the results until Monday?” She didnt reply until ELEVEN PM! She said it was too late to call and would try the next day! We finally spoke as I was grocery shopping. They did find a second CF mutation, but it is also of unknown significance! So, her suggestion, “Keep a close eye on his symptoms and if they persist, come back to see me and we can do further testing!” URGH, NO THANK YOU! Just to walk thru her very exclusive office door was over $500! Especially, since she is the “That’s not in the books yet,” kind of doctor!
39.) He had a bronchoscopy in June, to which they informed us was normal. I took the images to every appointment with me for months and asked if they noticed a malacia. Most said he was too old to have one. Two agreed that not only was it possible, but that he appeared to have one. However, one pointed out that they are difficult to diagnose as the camera pops it open on the way in. I called the doctor that performed the bronchoscopy and asked if they would kindly view the images again and see if they notice a malacia, as two doctors here said they possibly saw one. A week later, the nurse calls to inform me, “Dr. S does see a malacia, but it was minor and won’t cause any issues.” I reply, “You mean, like 6 days in ICU kind of issues?! I need documentation of the malacia, so that the hospital believes me and will discontinue bronchodilators! I also need a prevention plan and equipment for treatment.” She said she would check with the doctor and get back to me. The doctor called herself with a sweet message; however, didn’t meet any of my requests. When I called back, they truly said, “Dr. S has LEFT THE COUNTRY and will return your call next month when she returns!” I, of course, would not tolerate that solution! After many calls, and even more tears, I was prepared to take out our entire savings account to hire an attorney. A dear friend of mine is an attorney and explained that they are required to give me the documentation, but on their own time. I called again and begged for the phone log with that original message. After some time, she called back and said she found her IT guy to help her print! WHAT?! Any ways, she said she’d mail. My mom mentioned that they may be intimidated that I will use any documents to press charges, so they may just say it was lost in the mail. So, back at it! At least five more calls, two from the very sweet nurse at the ENT office who personally called and requested the document via fax. In God’s perfect timing, the fax came through the next morning, within 30 minutes of our recheck. The same appointment that the nurse practitioner apologized to me and said she needed to call the doctor in because of the intensity of my sons wheezing! I called my husband and explained they would most likely send us back to ER for breathing treatments, that would result in ICU! The doctor (one of my heroes that will remain anonymous until I get his permission to quadruple his patient load 😉 came into room and said, “I see you got the diagnosis! Well, keep doing what you’re doing for treatment and call me if you have any problems!”
40.) I’m pretty OCD, but not enough that I’d want another terrible stay at the hospital to make this an even list! 😉 We switched to a new hospital on round 2 and have nothing but compliments about them. I listed them on the Shout Outs page. However, the first visit reminded me the importance of speaking up. The pulmonologist was one I’ve spoke of on this list before and most likely read, as he was very aloof and insisted that our son has asthma and needs treatment. We discussed that we’d watch his progress before giving any medications. I reminded two separate nurses that I did not want him to have anything until we reevaluated, unless emergency. He was completely clear in the morning and stats were all within normal range. I left to pick up breakfast and called nurse when I returned to see when they’d like to meet… just to find out that she gave him IV steroids while I was gone!!!! Then, in the middle of the night, the oxygen machine signaled an alarm loud enough for the nurses in the hall to hear, however, I had to request help each time. On the third time, they sent in RT, who turned on the lights, woke up my son, and proceeded to explain why it was going off and how the nurses could fix it. At 3am, is it bratty to just wish he would teach the nurses in the hallway? The breaking point which brought on the tears was when my sons IV was leaking, I had asked if they would just remove, as we were being discharged. She said no and continued to wiggle and poke, causing shrieks of pain each time until I asked her to stop and send in the charge nurse.
WOW, I’ve had these all typed in different places, but combining them scares me! I used to wonder if it was my misfortune or the entire medical community. After adding here, I realize God allowed these things to happen so that I can emphasize my point of TRUST YOUR INSTINCTS! DO YOUR RESEARCH! ASK QUESTIONS! DON’T GIVE UP!