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.

Walking in a daze, so much is anticipated for tomorrow.

I'm so numb and disoriented I can't think straight. I am literally walking in a daze and cannot fumble the words to speak even when I am spoken too. Maybe I am tired.. I feel like I am in shock. The only feeling that I do have is in my chest, and it's nauseating. 

Today was hard on Annabelle. Her days this week seem to be taking her downhill. She is wearing down faster and faster. I hate to even consider the thought, but I would be lying if I didn't say in the back of my mind I keep questioning,  "is she giving up?". I want to hold her so close and beg her, "Not yet baby girl.. we're getting close.. I swear, mommy is preparing to fight full steam ahead!"

Annabelle struggled this morning with the sitter than she has any day this week. For over an hour Annabelle sat in the floor staring at the wall / towards the television. A house with three other loud, playful toddlers, she wouldn't play. She wouldn't speak, she would laugh, cry, eat or drink. She just stared. The sitter considered, 'maybe she's just REALLY into the show that's on TV?' so she turned it off... Annabelle stared at the black TV screen, she wasn't phased. She wouldn't play. She just sat. 

This is how Annabelle's days are becoming. Longer and longer stretches of needing rest. More days of being disoriented and simply, 'not with us'. It looks a lot like she is sleepy... but there just isn't any way a child should sleep as much as this little girl is sleeping, and when not sleeping, she is resting and not moving. 

This evening was uneventful. There are 600 things that I've said I need to get done. I have a laundry list of responsibilities to tend to: Bills. Medical bills organized. Submit payroll for attendant that cares for Belle. Clean the house. Gather medical equipment for a friend with a sick baby that needs to borrow some things. Target, I really need to stop putting that one off.. CVS for another prescription. Annabelle and my own bags. And finally, most importantly,  I need to collect all the dates and high levels of issues we have had with belle so I am prepared fully for the appointment tomorrow. 

The only thing I've gotten accomplished is a clean house.

My bff came over with gifts to bring a smile to my face. Shes a blessing. I poured us both a glass of wine bc we need it before tomorrow.. and I couldnt drink it. My nerves are shot. The entire visit with my bff - I was in another world. Every time we spend time together, we talk non-stop 99% of the time. Tonight, I would recognize there was silence in the room but still didn't have the energy to initiate a conversation. I was lost in myself and my own thoughts.. fears.. worries.. wishes.. and heartache to even be part of what was happening in front of me.

Tonight is a hard night. I can't tell if I am on the edge of collapsing or just preparing myself; mind body and spirit over what's about to happen. I am so very clueless about what tomorrow night will look like for us. The only thing that i know for certain is that the waiting and playing by the rules game is over. I am fully prepared to lose my mind and march my daughter that's suffering wherever I need to get her the help she has deserved since this began. Tomorrow is the beginning of a new page... a new chapter of our lives. Annabelle is ready to close the last chapter and I don't blame her. Our entire family is ready for the happy ending of this story.

I'm laying in bed contemplating whether or not I pull myself together and organize for tomorrow or if I should just lay in the warmness of my bed and and allow myself to run away with my thoughts in silence. Its a really hard decision, sadly... I usually hide from the cold harsh reality that silent thinking brings. Thats why I love distractions. Tonight though, I don't want to move. I want to be sad, mad, angry, hurt, motivated, strong, rejuvenated, focused and determined.

Dear God. Please, I ask you to hear my and all Annabelle's praying family and friends prayers. I need your strength and guidance tomorrow. I need you to lead me towards the best path to help my daughter. I need clear vision that I see past my own personal opinions over the staff I will meet tomorrow and I see them for the knowledge and skills they have to offer. I need patience to make it thru the conversations I don't want to hear and I need strength to carry me thru the harsh realities of the words I also may not want to hear. Most of all God, I need that feeling of mother's intuition to beat and radiate heavier than it ever has before, so much that I will not be skewed by anyone else's impression of my daughter but I will remain focused and clear on her situation and my role as her mother and advocate to help her fight this battle. It is my promise and thru your work that I will fight for this baby girl. She is amazing. She is incredible. She is strong. She is funny. She is smart. And she is also very, very, very sick and very tired. 

She is trusting in her mommy to help her, I am the only person that can provide this little girl with the justice and painfree life she deserves. I am trusting in you to help me. You are the only one that can carry me thru this journey for her. I don't want to do it wrong. We don't have more time to waste. She needs help, now, fast. Please God, show me what to do. Continue to guide me and carry me. Continue to dress me in your strength and courage to face the darkest of days ahead of us. Bless our family. Wrap Madelynne in your love and remind her how much she is loved by all, even her mommy and daddy that cannot be with her when she too needs us.. because we are fighting for Belle. Make sure she knows and trusts just now much we love her. Share the same for Annabelle and also the love between her sissy. Protect our home, bless our family and hear all these prayers. 

Amen.

She's Slowing Down

Annabelle is having more and more waves of sheer exhaustion. She’s pushing through, but she’s also slowing down faster than she ever has before.

Some days she may have a great day which includes: 1 hour, 2 at the max of playtime.. followed by several hours of exhaustion, sitting or laying, resting or sleeping.

Some days she doesn’t have such a great day which includes: small chunks of time playing.. followed by a full day or several days of sleeping. 

Annabelle seemed to be having a good day Saturday so we decided to get out of the house for a bit. We headed out first thing in the morning to get the best use of our time with Annabelle. One quick lap thru Kohls and she was wiped out by Home Depot. I didn't complain though.. I found myself a comfy chair and Belle slept while I rested and AK and Mady shopped :) Works for me!

 

Her speech has blossomed so much, she amazes me. She is communicating much better with both words and showing us what she wants. Her vocabulary is still only about 10 words, but that’s a great improvement from the 4 words a few months ago. However, the last several days, she hasn’t spoken at all. She won’t even say simple things that are a normal part of her vocabulary such as, “Sissy – mama – cup – please”. I can’t tell if she is stubborn and doesn’t want to speak, or if she can’t and has temporarily forgotten. During these times of not talking, she also doesn’t ‘show’ us what she wants/needs. The communication barrier is sky high once again and the entire house struggles. Speech therapy is every other week in our home, I am considering rescheduling that to each week so she consistently has someone working with her and encouraging her communication. This is a conversation I will be having with the therapist this afternoon after she meets with Belle this morning.

She’s Forgotten How To Eat...

I didn’t know this was truly possible. When we first got our EoE diagnosis, I was encouraged by many people to have her setup with a feeding clinic.. I was reluctant. However, when I called, I was told that I cannot even put her on the waiting list until she begins eating food again. She has been eating for almost a month and still isn’t able to eat. It’s heartbreaking. She takes a bite of an apple, chews, chews, then spits it out and takes another bite. Most times she will store the chewed food in her cheeks like a chipmonk. She cannot grasp the concept of bite, chew, swallow. She still hasn’t begun to eat and it’s only beginning to get more and more frustrating for her on a daily basis. She can do a pureed food pretty well, but nothing that actually requires her to chew + swallow.

I called the feeding clinic and it will take a minimum of 9-10mon to be ASSESSED. Then she will go onto the waiting list to begin treatment which could take up to two years. Are you kidding me?! It was hard to compose myself over the phone as I asked the lady, “Are you seriously telling me that as I call you right now for help for my child, you’re telling me it will take up to almost 3 years before she can begin treatment?” Freaking incredible. No thanks.

On The Topic of Foods…

With the most hesitation, knots in my stomach and lump in my throat – It’s really starting to look like Belle is failing her food trial of apples. Sweet Potatoes were a definite, clear fail. She relapsed within a week of eating sweet potatoes. We treated her and it appeared she has fully recovered from that flare. Apples haven’t looked the same as sweet potatoes presented itself. However, she isn’t looking good either. Her sleep is still erratic (although that isn’t completely due to food, I’m positive), she is vomiting every couple days out of the blue.. for several weeks now. And finally this week the coughing and choking has begun again. She does well when trying applesauce, but chokes when attempting to drink Elecare. Her cough is raspy. Annabelle is with her old sitter this week, the same god-send that made it through the journey with Annabelle that led us to her first EoE diagnosis. When she heard Annabelle’s cough, it also sounded all too familiar to her as well, enough that she contacted me to confirm what I was fearing.

I called Annabelle’s Allergist AND GI at CHKD Monday morning and haven’t heard anything from them yet. I am looking for direction from one of her specialist, either her allergist or GI. It’s a tough decision to decide what to do. We can either take her off all apples, consider this a fail, treat her for another relapse and end the trial. Or I can continue giving her apples and we can scope (Upper/Lower Endoscopy) to confirm via biopsy that she has relapsed. 

If we want to scope: Dr. Teasley has to approve the procedure because it involves anesthesia. I really don’t want to continue putting her through surgery (each time she has an Endoscopy, she is terribly sick for weeks afterwards from the intubation). And we would have to continue giving her the food that’s making her sick until the actual procedure. These decisions can all be made after tomorrows meeting with Teasley and when our specialists at CHKD call back, they better call soon.

Annabelle had a slow day yesterday. She seemed very emotionless, wouldn’t talk or speak, didn’t want to play too much and slept a lot. After times she would play with her little friends, she would quickly crash and need plenty rest not running, walking and just laying down. I’m still amazed at how fast this little girl depletes of energy.. on days that I feel like a trip around Kroger kicks my butt, my heart aches when I see my daughter run 5 circles and needs to lay down afterwards. Here is a video sent from the sitter during the day yesterday. These videos and seeing my babies melts my heart while I am at work and cannot be with them. They are priceless.

When I picked her up and brought her home, and was an emotional basket-case, cried over everything and wanted to be held the entire evening. I ran to pickup some home-grown apples from an aunt while Mady went on a date with her daddy. Annabelle cried during the drive 15min down the road, and refused to let me put her down while we were there. She wouldn’t speak to anyone, she just wanted to lay her head on my shoulder and stare away blinking as the time passed. 

I brought her home and made her a cup for bed. Annabelle was less than happy for the evening. She cried her little heart until I surrendered and we put her to bed. It's always a tough balance; 'Is she testing us? Is she just overly tired? Or is she hurting and really needs us?' Last night we took the approach, "Sweetheart, you're exhausted, go to bed.. you are going to have to cry it out." :( Still though, it breaks my heart. If she would fall asleep while I held her, I would spend days and days rocking her in my arms with a warm heart. 

Mady stayed up late with mommy and daddy. We talked about her date with daddy, they went to the movies! She saw Smurfs 2 and was so proud to tell me about the experience. Finally I told her it was time to go to bed.. until I tried to open her door and it wouldn't open. . . Belle had fallen asleep on the other side of the door! Silly little girl. 

I have been speaking with Annabelle's nurses at her pediatricians office. The GYN that wants to perform the Pelvic Exam under anesthesia cannot do the procedure until next Monday, the 26th. She also cannot perform the procedure without Teasley's approval. Tomorrow is the big, big day. My stomach is already in knots and I am doing everything in my power to put my game face on. Tonight I anticipate sitting in my dining room with my bifocals on and collecting, organizing, and writing down notes, questions, concerns, game plans and anything else that will need to be discussed with Dr. Teasley's Team tomorrow. I am praying with all my might that she will shed some light and aggressively help Annabelle and our family find answers for what is happening. If I don't feel as though she will quickly offer Belle relief, I have every intention of packing our bags and moving her care to another hospital. Fingers are crossed that Richmond will work out for us and MCV will finally prove they care about my baby girl. It's time they step up, of not, we're walking out to find someone that will.

Bleeding.. and I guess that's ok.

For a split second I considered not blogging about today's events because of the detail that brought us to the hospital. After that split second I realized that anyone who is praying for Annabelle and her journey right now deserves to know what is happening. The best resources we have found for Belle have all been through family and friends that find opportunities to shed light, insight or help in areas we are struggling, whether that be medical resources, hospitals, doctors etc. 

I also never, EVER want another little boy or girl to have to suffer what Annabelle is living, and if her story and experiences help shed light and answer mysteries for others, than I am proud to share.. and I know Annabelle would be as well. 

That being said, please do not read anything below without maturity or the most respect for our daughter and what she is currently battling. 

Please everyone, prayers, insight, thoughts - suggestions - advice... and mostly a lot of prayers are always, always welcomed. I have never experienced anything like what we have the last two days. We are lost right now and truly need prayers to help carry us to the next step for Annabelle. Thank you, xoxo



Thursday Night
Before putting the girls to bed last night, I laid Belle on the floor and stripped her down with her favorite pink monkey jammies picked out. I asked her, "Where is that belly button?!" and she giggled as she pointed straight to her tummy. A couple belly kisses and the most precious belly laughs you could hear later, I peeled each side of her diaper back to change her into a clean diaper and get ready for bed.

Blood. Again.

Only this time the blood wasn't sitting in her diaper in what appeared to be passed from her stool. The blood was covering all her 'little girl parts'. My eyes were huge and I gasped, I couldn't believe what I was seeing. In fact, I had to wipe and wipe and wipe and wipe and move my head about 5 inches closer after blinking several times to be sure I WAS actually seeing what I thought! I was so disappointed inside, I felt terrible for my little girl because I knew this wasn't ok. I smiled back at her... changed her diaper and continued belly kisses to watch my fearless daughter giggle before crawling into bed.

AK was working late last night, in fact, he worked 20hrs yesterday so during the roller coaster of starting our day screaming in the worst pain I have ever heard, passing a LOT of blood and finishing our day with sure bleeding - you can safely say I was exhausted in more ways than one.


Friday Morning
AK came home shortly after 2am from work and fell right asleep. I pulled myself out of bed this morning and went to work without much conversation between the two of us (I just didn't have that type of energy without coffee), I told him we needed to talk about some things later, I would also check the weather so we can plan the weekend.. we chatted about needing to get the grass cut etc. I ran to work and he called me about 45min later, "WHY IS OUR DAUGHTER ON HER PERIOD?!"

I asked if she was still bleeding and he told me she was. I called the pediatrician and was put on hold, Dr. Young picked up the phone immediately and said "WHAT?!" .. "Yea, I know... I don't know what to say. But yesterday when I called you and told you she was passing blood after screaming... Im pretty positive now that the blood was not from her stool at all, I think this was the cause." She ordered me to have her brought in immediately and I called AK to make that happen. I met him at the office.

Dr. Young immediately suited up with gloves. I told her, "The only thing that I can think of is that when she plays in the tub or between diaper changes.. sometimes she will 'play' or wiggle her little fingers down there in pure curiosity. Im reaching for anything at this point really, but maybe if she did that, maybe she cut herself with fingernails?" The only issues that I have with this theory is:

• A tiny cut would not contribute to the amount of blood I found in her diaper yesterday morning, it's simply not possible. 
• The last time she had a long bath was Wednesday night. It's now been two days and a tiny cut would not still be producing bright red blood like she is having. 
• Her fingernails are not that long.

Dr. Young cleaned all around and with a team of two doctors and a nurse, they all tried their hardest to find any cuts or lacerations without luck. They determined there were absolutely zero signs of injury, trauma, lacerations, cuts or scrapes. Even though Belle was 'cleaned up' thoroughly.. she was still passing pure red blood. Dr. Young looked at me and said, "Go to MCV ER immediately. Im calling them now so they will know you are in route. I will make sure they finally take this poor little girl seriously. Under ANY circumstances should a 2yr have vaginal bleeding like this, this is not okay at all."

I arrived at MCV and was immediately taken into our room. A doctor and two nurses joined us. The main Doctor, without a doubt seemed less than pleased to be working with me. I couldn't understand the frustration until she read off one of her first lines in our conversation:

"Yes.. yes, I saw all that. I saw that you've had done, Let me get this straight, Upper Endoscopy, repeat Upper Endoscopy, Lower Endoscopy, Brain MRI, Chromosomal studies, Bone Age Scans, Epilepsy Monitoring, more labs than a two yr old should ever need, so what is it exactly you're looking for next?" 

My jaw fell in the floor... all the while giving myself a pep-talk "Ashley, you will do Annabelle zero justice if you are wearing an orange jumpsuit, sitting in jail", I decided to set the tone right away, "I don't know lady.. I haven't exactly decided yet!! I haven't had the experience of a 22 month old with VAGINAL BLEEDING before! I was kinda hoping the hospital and your medical team could help with this."

She changed her tune once she realized just what type of conversation we would be having. She informed me, "well today we will only be assessing and treating Annabelle for the issue of this bleeding you have seen, we will not be addressing any of her other issues and very rarely is a child admitting for something such as bleeding like this." I then asked her if she would like to take a look before even making that decision. I also asked at that time that she bring the Attending in the room with her before we did this. I knew just where this conversation was going.. it wasn't going in Annabelle's favor and I didn't understand why. But the end of the story is that something is VERY wrong with my daughter, and I'll be damned if a Doctor with an attitude is going to overlook this urgency because of whatever bad taste she has in her mouth over Belle's chart.

Two nurses and Two Doctors watched as I revealed the bloody diaper that poor Annabelle was wearing. By this time, there was a great deal of blood pooling in her diaper. Immediately they told me that they were just scratches all around and wrapped the conversation quickly by telling me to put A&D ointment on her and let my pediatrician know if it gets worse. I asked, "Where?? Put A&D ointment on the source of the bleeding? Fine. YOU show me where that is, and I will do as I am told." The doctor continued to tell me that they were scratches, and I continued to argue that what she was pointing out was purely my little girls areas covered in dried blood.

Finally the Doctor came back into our room with news. She tells me, "Well I learned something today (not exactly what I wanted to hear), I just spoke with Endocrine and GYN and often times when issues like these happen with little girls, it's a result of a ruptured ovarian cyst or ovary. That would explain the amount of intense pain and screaming she had yesterday morning and then followed by the first heavy amounts of blood. We are going to do an abdominal ultrasound, they will be down soon to get you." I exhaled, thank goodness, they are actually thinking! 

Annabelle and I rode together in her bed for the ultrasound. The first tech struggled to even find the childs uterus, so he stepped to the side and allowed another woman to lead the show. Annabelle was better than you can imagine. She literally laid there on her back the entire time and hardly ever moved. She NEVER attempted to roll over or sit up, when she got antsy, the ultrasound tech gave her another wand to play with and she stayed entertained. She wasn't feeling well, she was exhausted and she reallllly needed a nap. Despite everything, she laid there for well over 30min without moving or arguing. I was beyond pleased with my little girl.

During the ultrasound, the tech jumped with relief, "There! You see that, right there! That's where the bleeding is coming from. Zoom in and capture that picture. That's where it's at". AK and I looked at each other in silent relief and smiled.. we knew this would mean answers for Annabelle, if felt SO nice to feel justified and I just couldn't wait to see the woman's face downstairs when she read the results. 

We were taken back to our room in the Peds ED and the Endocrine Team met us shortly after. This team was on the exact same page as the first Doctor. She explained that they see no reason to do any bloodwork or check for any hormone levels because Annabelle didn't appear to have 'breast buds' to indicate that was a concern (btw. we never did any type of labs or any bloodwork while we were there at all). She too looked at Annabelle as I took her diaper off and attempted to tell me in several different ways, "She's likely just scratched herself and she's irritated." I was beyond furious.. but in the back of my mine, anxiously waiting for the ultrasound results because regardless what this woman's opinion was right now.. I knew the ultrasound would say otherwise. The Endocrine Doctor then begins to question AK and I about hygiene and nail trimming. She wanted me to explain to her how I wipe and care for my child (she clearly doesn't know how OCD I am about cleanliness and my poor children that get scrubbed down constantly.).. How often her nails are cut (I don't know.. twice a week?) and when she had loose stools all day yesterday, how often were they changed and the contents could likely have irritated her areas to cause the bleeding. This woman was beyond ridiculous. I explained to her over again.. "No, Im sorry. Maybe you also didn't get the message from my pediatrician that swabbed Annabelle several hours ago and proved that this is not a result from cuts, but this is all a matter of vaginal bleeding." I exhaled until she decided to go read the ultrasound results.

The first Doctor came back into our room. "Well the ultrasound showed no signs of bleeding or any areas of concern at all. Like we said before, just put some cream on her and if the bleeding gets worse, call your pediatrician". 

I am speechless. Again, all I wanted to do was cry. I was so upset and lost for words. Here I am with a poor little girl that has spent the last 24hrs in the most excruciating pain, spent the last several days sleeping all day and night, and now pouring blood but none of these problems are a concern? Add to these, all the issues we are having outside of this one episode, and no one wants to help my daughter. She told me, "Im really sorry that you seem to think we don't care." At this point I was done. I was furious, "Woman! You don't care at all! You know damn well that this is not normal. You knew about her chart far more than I could tell you before we even walked in this hospital and you knew everything this child has been through. You have seen how many times we have been in this emergency room... I have carried that baby through those doors barely conscious when I wasn't able to wake her.. I have carried her in here with a 93 degree temperature.. I have carried her in here with 105 temperatures.. She has visited for seizures and now vaginal bleeding and every single time, all you Doctors smile and tell us you are sorry you can't do more but you do care. You're full of shit and you haven't done anything YET for this little girl. She's fighting her butt off and soon she's going to give up if we can't help her. She can't take much more... that bleeding is a result of something and it's hurt her.. it hasn't stopped for two days and is continuing to bleed. You are sending that baby home, and that's on your conscious. You are all making a bad decision."

Needless to say, we are home. 

Before I left the hospital, I talked to my pediatrician over the phone. She had been in contact with the Doctors at MCV ER the entire time we were there, and she was giving them hell. Here is what I didn't know, what was discussed, what the plan is, and also what contributes to my final amount of lost respect for the medical world.

Bleeding is coming from somewhere, clearly. In order to find the bleeding, Annabelle strongly needs a pelvic exam performed. To do so, she has to be put under anesthesia. Here's the thing, if Annabelle is diagnosed with Mitochondrial Disease, anesthesia can have a negative affect on Mito, therefore Dr. Teasley needs to be informed before anything like this can take place. Dr. Teasley was notified today while we were in the emergency room, that Annabelle was there being seen for vaginal bleeding and the source couldn't be found, nor could the pain. She was notified that GYN wanted to perform a Pelvic Exam but needed Dr. Teasley's clearance beforehand. Dr. Teasley will not grant permission to put Annabelle under anesthesia for such a procedure until after she see's Annabelle. And, she will not see Annabelle before next Thursday. So for that, we are left with nothing else to do in the hospital but to go home and wait again, for next Thursday. 

I am furious... I could continue to write and write and write about how I am feeling, processing and my thoughts but at this point I assume they are the same shared by you. Frustration. Furious. Angry. Disappointed. Helpless. Sad. Pissed. Defeated. Confused. Bitter. and generally.... numb for this poor child. 

The only things I can pray for right now are that whatever pain plagued Annabelle yesterday, never ever returns. I pray the bleeding stops, I am praying with everything I have that the bleeding stops; as of 8pm tonight she was still very much bleeding fresh blood. I am terrified that I know something has caused this to happen, and I hope it isn't doing more damage by not being recognized. I also pray that the team of doctors and my pediatrician will continue to support me and my mission with Annabelle if/when I grab her pre-packed diaper bag and load into our car on a full tank of gas and head East to the Children's Hospital of The King's Daughter's. At the FIRST notion of any amount of pain, extra amount of blood or any changes at all what so ever, we are going. I hope that decision will not hurt the plans for next week or the judgement from my pediatrician, but at some point - I cannot play by every single rule to help my daughter, I have to play by the book that says, "When your child is in pain and truly needs help - get help". I cannot believe we are home with her in this condition right now, my mind is so very confused. It's amazing to me. The medical system is a damn joke. I just hope Annabelle makes it out of all this... I am right beside her, fighting with every single thing I have.With God in my back pocket leading our paths and my heart guiding us towards what is best for Annabelle Grace. I hope I am doing all this right... Annabelle needs help, she needs prayers, she needs that one incredible doctor out there that will have all the answers for her! She needs to make it past next Thursday, which will gain us our stepping stone to taking Annabelle where she will get everything she needs.