Washing our hands of VCU Health System

I am still too mad to tactfully update on yesterday’s visit. I am so very bitter and angry, I am heartbroken and beginning to carry the feeling of defeat on my shoulders. I don’t want my vision for my daughter to become fogged by the doctors lack of concern over Belle. I am begging for someone to care… it’s breaking my heart when I cannot find anyone who will.

Wednesday night I couldn’t sleep. I spent too much time researching various hospitals that I would use as a second opinion if I didn’t like how the meeting went. I researched Medicaid and United Healthcare to learn what our options are and just how far I can go with their insurance. I studied our own finances and schedules to see what I was capable of conquering if/when I hit the panic button. I wanted to be prepared for ‘worst-case-scenario’ (and good thing I was!).

With only a few hours of sleep, I pulled myself straight out of bed Thursday morning – nervous, nauseated from anxiety and determined. Madelynne was having a sleepover with a friend so Annabelle and I could spend the morning together before her appointment. I cleaned the house until I literally ran out of things to clean (Doesn’t seem possible does it?). I took way too long taking a shower and I drank several cups of coffee… still, the time was creeping by. Annabelle took a nap while I moved around the house and got myself ready, once she woke up we picked out a dress, shoes and bow and we headed out the door. An hour and a half too early. How should we blow the time? What better way than at Target! I wanted to shop for some gifts for a friend we would be visiting at MCV anyway. Her infant daughter just had her g-tube surgery Monday, but she also has an older sister like Annabelle does so we wanted to buy the baby, and also big sister some nice things to play with so everyone felt a bit spoiled during this big speed bump in their lives. 

Finally we were on our way to the hospital, but still arrived… 35 min early. Who am I?! I am always late! Belle and I took a trip to visit my mom, Nenaw, at her office in Nelsen Clinic @ MCV before heading over for our appointment. When AK called, we met outside and made our way to Pediatric Neurology together.

This is where I want to draw a blank and forget the conversations that even took place. 

Dr. Teasley came into our room 25min late, rushed thru the door and wouldn’t make eye contact with any of us, “Im Dr. Teasley. Does she go by Annabelle?” .. yes, she does. “First off. Who gave you the idea of Mitochondrial Disease and what was their reasoning behind that?”. My jaw dropped as I looked at AK across the room. He knew I was in shock. I felt like I was being scalded by the principle. He dropped his head and I turned my attention back to Teasley. I explained, “Our pediatrician is the one who mentioned Mitochondrial Disease and suggested you would be the best person to see. She reached that thought by Annabelle’s developmental delays.. growth that has stopped.. temperature fluctuations.. and an all around combination of bizarre, unexplained symptoms.” Teasley wouldn’t look at us. She scrolled thru her computer while I spoke and then snapped back around, “You see… I am looking thru Annabelle’s chart and I do not see any records of what you are telling me. She stared at me waiting for me to speak. I was speechless.

“I carried that child thru those emergency room doors over a month ago, barely conscious. That isn’t in her record? Her temperature was 94 when I left my house, It was taken every couple minutes with my pediatrician in contact with us, and my nurse/sitter standing beside me. I drove all the way to MCV and arrived and she was unconscious. Within minutes of getting thru the ER, her temperature was 99.9. That isn’t in there?”

She looked and said the report is very inconsistent with what I am telling her. She asked with a sharp blunt tone, “WHY do you drive to MCV? Is there no other healthcare facility near you? Why do you continue to come here when you live in Chester?”

“Because the goal for the last several months has been to follow you! MCV is 20m from my house, yes, it practically is the closest. This is where my pediatrician wants us to be coming, and therefore that is what we do.”

Teasley continued to lecture that there are no records indicating what I am telling her is happening with Annabelle. I proposed, “Bloodwork. Her bloodwork has been abnormal for months. How do you suppose I stage that? Her platelet count is double what it should be. Within days of one another.. her CBC ranged from normal, to extremely abnormal.”

She agreed the bloodwork was very abnormal.. but then told me, “You do not know that she wasn’t just sick during that time her bloodwork was done. When you are sick and fighting even a cold, that will cause abnormal numbers.” – I know damn well she wasn’t ‘sick’, beyond what is happening during the last several months.

“Seizure / spells. She even experienced a spell while we were being recorded both video and audio at the Epilepsy Monitoring Unit. The nurses and staff watched the spell that I have been describing and were all intrigued, impressed at our reaction time to get someone in to catch it. It took the nurse a long time to bring Annabelle back to a point in which she would break her focus from the wall onto the person calling her name.”

Teasley, “Report indicates there were no seizure activities recognized on the EEG.”

Me. “Ok great. So if it wasn’t a seizure, that’s fine. She still experienced the spell that I am telling you about, doctors saw it, there are videos of it happening. If it’s not a seizure, you tell me what it is! I proved to you in a hospital setting what is going on. It’s not my fault an EEG didn’t see it as a seizure, but it’s your responsibility to explain it”.

Teasley – she didn’t have anything to say.

Case and Point: 

Friday I brought Annabelle into that ER. We were greeted by a nurse chanting, “It’s the famous Annabelle of the ER!”. She experienced full vaginal bleeding for 4 days straight and we were sent home without any tests.

Teasley – “No. the record states she had a cut/scrape that was the cause for the bleeding.”

At this point I was finished. I was done.

Me. “THAT’S MY POINT! I am doing my job by following and playing by all your rules to show you what is going on with Annabelle IN A MEDICAL SETTING. The staff of the ED have seen Annabelle with these symptoms, I cannot vouch for why the discharge paperwork states ‘cut/scrape/laceration to cause the bleeding’, when I demanded them to show me where the cut was and they couldn’t. My pediatrician and two other nurses also vouch it was vaginal bleeding and not a cut.. but at MCV everyone is less than willing to recognize a problem. How many times and in how many scenarios do you expect me to show you what is going on with Annabelle and no one wants to help. It’s your job to do that!”

All the while Annabelle was stumbling in the office. She asked Belle to walk down the hallway to see the stumbling and when Belle reached the end of the hall, she fell. Typical of her clumsiness lately.

Teasley began to explain to me that she cannot and will not pursue any testing, labs or any work for Annabelle until another symptom appears and I can have it medically documented. She claims she doesn't have anything to go on for Annabelle's case. At this point AK looked at me and said, “This is a joke. Are you ready to get our things and leave, hun? Our kid is sick, let’s go.”

Teasley’s approach is to admit Annabelle AGAIN into the Epilepsy Monitoring Unit, this time for 5-Days for observation to catch ‘seizures’. However, she won't schedule it for months..

I asked, “What’s your goal with that? Really? What do you want to see Dr. Teasley? A seizure? I showed you last time what we were seeing as her ‘spells’, you haven’t given an explanation for those and they’re already recorded. Temperature fluctuations / pain spells of screaming hysterically? They documented all that at St. Mary’s and also wouldn’t do anything. Clumsiness and falling? You just watched her. I don’t want to put Annabelle thru that procedure again. 2 ½ hours in a straight jacket was pure hell to my daughter, and isn’t necessary to repeat.”

She told me, “Sometimes we just have to do things we don’t want to do to get answers, huh?”

I just stared at her.

Finally we wrapped the meeting up. It wasn’t going anywhere. I cannot and will not continue to waste my energy begging for someone to care about my daughter. Let alone someone in healthcare when their entire job is to provide sick patients with care. Clearly Annabelle and her file has been flagged to a point no one is willing to see her for the symptoms she is presenting, but rather see her as the child of a crazy mother that habitually comes to the doctors and hospitals for a simple ‘fever’. How in the hell they cannot read blood work, growth charts and recognize an unconscious child or 2-yo on her period, I don’t understand. But it’s not up to me, nor do I have the power to change any of that.

AK and I left the appointment both speechless, frustrated and furious. All the while we carried our heads low as we crossed the streets in downtown Richmond carrying our baby girl. We kept whispering, “What do we do now? …… what do we do? where do we go?” Neither of us would answer one another but we were both so lost. We don’t know how to do this. Neither of us are doctors.. we’re just mommy and daddy that love our child more than life itself and we are left to go home and watch her continue to struggle. I can’t drive this ship alone, nor should we be trying to do so. But if we don’t, who will? Clearly it’s not the doctors we continue to see! What do we do…. where do we go? We couldn’t stop repeating ourselves. The only thing we do know is that we are finished with MCV.

After a visit with a friend, Annabelle and I headed back to valet to get our car. Despite her struggling balance, she moved herself into 2-yo tantrum mode of being independent and demanded to walk the sidewalk. That worked great for her.. she fell instantly and skinned her knee. 'See kid, told ya, mother knows best.' She slept the entire way to pickup Mady and then all the way home. Once we were in the door, she woke briefly and then slept all afternoon.

 

Taking The High Road

Yesterday was a good day. I was able to find closure with the MCV/VCU Health System. The decision may have been a bit more difficult if we left balancing a subtle amount of support.. but not enough for fast answers. Instead we left with zero support and a reason to wash our hands and move forward to a healthcare facility that will see Annabelle as a new patient and take her for the puzzling case she is. Annabelle deserves a fresh set of eyes and clear perspective from a TEAM of doctors that care and sincerely want to help find an answer. I believe the worst thing I have done to Annabelle during this time is continuing to allow her to be seen as an outpatient case from various highly specialized specialists that suffer from tunnel vision. If Annabelle doesn’t fit into the cookie cutter of their specialty, they are not willing to help. They refuse to see out of the box. We need a team of doctors to sit around a table and put all their heads together, encourage one another’s thoughts and bounce ideas around the room until something clicks for one of them. Annabelle needs a team, not a handful of specialists she sees her individually, one on one. However, if we get a team at MCV – that table will consist of a few Dr. Teasley’s, and I fear she could jeopardize the entire good of a Team Case Study on Annabelle. We need a fresh set of eyes, thoughts and ideas. We need a hospital that wants to help. MCV should have been that hospital for us, and they were not.

I have played by their rules. For months and months at Annabelle’s expense, we have done everything we were supposed to do. We have done everything we were asked at the painful mercy of my baby girl. We have wasted time and allowed her health to fail faster and faster to the point she is giving up and running out of energy. I should have stopped playing by the rules months ago and started to wear crazy on my sleeve instead of my heart that does what it’s told. I apologize to Annabelle for wasting her time, we have truly gained nothing from this experience with the doctors and Health System. We take our children to the hospital when they need help.. and this is what happens. My heart shatters for all those that this is happening to on a daily basis. We have major problems with our health system. Major problems.

I called our pediatrician last night. After I composed myself. It took hours to stop the steam coming from my ears… and I would be lying if I said it wasn’t still slowly pouring out. When Dr. Young got on the phone, she was very quiet. She told me, “Hey hunny… I already know… I do. Teasley called me as soon as you left and trust me, you and I are on the same page so we don’t even need to discuss it. Let’s discuss our next game plan, ok? We will figure this out together. I have done more research than you can imagine over the last week and I couldn’t sleep at all last night preparing for this happening today. Let me tell you what I’ve come up with..”

We talked for over an hour last night. We discussed back and forth several scenarios that would make for plausible explanations for the last several months. There were a couple things that she found that unfortunately fit perfect into Belle’s situation (the biggest piece was the vaginal bleeding.).. none of which I am ready to say out loud or even type into words. We won’t even discuss the possibility until I am told otherwise. I asked for Dr. Young’s support if I take Annabelle out of the Health System. I asked if she would follow me and continue to support Annabelle if I made that decision and I was so relieved to hear that she will stand behind me 100% and do whatever I need from her when I get to the next hospital. That moved our conversation between the three hospitals that I want to consider: Duke, UVA and Johns Hopkins.

Location isn’t a factor to me any longer. Money, drive, convenience, nothing matters.. the only thing I want are the best doctors that Annabelle will need when we get there. We decided to organize our thoughts into what we are shopping for at a hospital:

• Excellent Pediatric Unit/Teams
• Gastroenterology. Because something we DO have, are official diagnosis w/ EoE, GERD, FTT.
• Neurology. ‘Spells’ / Losing consciousness
• Endocrinology. Temperature fluctuation / Growth / Family history of several Endocrine disorders.
• Hematology & Oncology (Pediatric). To have on hand to explore possible scenarios.

Duke and UVA both have great Cancer programs, and also very skilled Cardiac areas. The main reason I continued to reach for Johns Hopkins is because of their Pediatrics Program and the advancements they are making in GI with Eosinophilic Diseases. They are studying and making a lot of headway in that area and it would be nice to be part of a team and hospital that are already two steps ahead of the game in a disease we know for certain is plaguing Annabelle. I don't know if EoE plays a part in what is going on.. but it cannot hurt to have a knowledgeable GI part of her team.

I don’t have a game plan. I don’t have an appointment, a doctor I want to see or any resources. All I know is that Annabelle needs help, and now. Thank God for our pediatrician that continues to stand behind her and support us as we get thru this. All that is getting me thru is knowing one day I can look at my daughter when she needs help and I will be able to help her, for the first time ever. I will know and understand what she is feeling. I will sympathize during her roughest days and I will be able to develop a treatment plan with her doctors. I also look forward to the day I present each one of the doctors that have turned their heads from my baby, and prove to them I am not crazy and xyz is what was wrong with her. Spiteful of me? Maybe. I'm still pissed. But determined more than ever.

I am finished playing by the rules. I will no longer ever listen and follow one doctor for months and months to lead us down a road that is only a dead end. I have always fought to be my daughters biggest advocate but I will now do so with a lot less class and a lot more crazy until we get what we need. Gone are the days of local traveling, Hello to the days of depositing my paycheck at Wawa for gas. I feel like I am out of my mind, perhaps I am. But she’s my baby girl. My entire family needs peace and answers. Annabelle has fought hard and long enough for help… I’m not asking her to wait any longer. The moment she needs my help, the second she begins showing signs of pain/temperatures/’spells’, or the instant she starts bleeding again we are gone. Our bags are packed, the car has gas and I am waiting to hit the go button.

Crazy. 

I never, ever would have imagined this is my approach. We do what we need for our babies, and I will travel to the end of the earth if that is where I find the help.

Game Face, ON.