We're getting more clues, but not more answers.

I balanced doctor phone calls and work meetings - text messages, forwarding medical records, emails begging for someone to see Belle and also wrapping up projects at work that are coming to a close. I swear, after yesterday by 2pm, even I was utterly impressed with MYSELF for accomplishing so much! lol (I like to give myself pep-talks when I can). I wasn't making much headway with getting new appointments or being seen anytime soon - Dr. Kumar is actually sick and out of the office, which explains why I haven't heard back from the Endocrinologist. I moved back to my mom at MCV and asked her to see who is second best and what I should do - the soonest appt. at MCV is in December. I yelled, "She'll be dead in December!" I didn't mean to sound so abrupt, but that's the first honest thought that came to my mind. This kid is spiraling downhill and cannot/will not wait until December. She told me our best bet is to go to the ER - I declined. I'm not doing that, I won't go until there is justification they will see her and began floods of testing and not just kick her out the door. I have Mady at home that is also a top priority and I can't leave her.. gosh I miss that little girl.

Around 3:30pm I get a call from our sitter, I pickup the phone, "Hey girl, I'm in a meeting, what is going on?" She sounded panicked and I could hear the shaking in her voice, "Ashley somethings wrong, I took her temperature and it's dropping fast, she isn't acting right, you need to come now!" I didn't think twice, I slammed my laptop into my bag and booked it out the door. On the way home to get Annabelle, I called the pediatrician on her cell, "Hey there. It's go time - call MCV and tell them we're on the way. Her temp is dropping again. . .do we have any lab work results yet?" Dr. Young stayed on the phone with me the whole time as she searched thru incoming results, "Oh yes! They're starting to come in.. let's see what we have..... WBC, normal. Thyroid, normal - wow(!). . . . OMG ASHLEY GET HER TO THE ER NOW! Her Platelet Count is thru the roof! Im calling MCV. Get her in now!" 

I picked up Annabelle and the sitter explained her behavior during the temperature drop, she said she got very sleepy and just stopped reacting normally.. Annabelle was trying to get up but just couldn't move. I could tell she was shaken and I was remembering the panic in the doctors voice just 2min prior - I needed to get out the door stat. But there was Mady - begging for mommy's attention, telling me everything she knows that will make me happy, "Mommy, I kept my underwears clean all day! Are you proud of me?" "Mommy, Mommy! I drew you a picture, do you love it? Can I show you?" "Mommy.. please don't go....." This was the second day in a row that I've rushed home to gather Annabelle and flew back out the door leaving Mady in my dust. I love my daughter's equally .. but Mady is my Mini-BFF, I hate having to continue to abandon her, it breaks my heart. Seeing her sad, pouty face is painful and she doesn't understand. The only thing I can do to help her thru this is to keep her distracted and having fun. I do this by passing her around like a hot-potato between awesome friends... Mady has been a VERY lucky girl to have lots of sleepovers lately :) She's been visiting a lot of friends and having a lot of fun. I hope she is seeing it this way, and not that mommy and daddy are not with her. I miss her though, and it's breaking my heart. Annabelle misses her sissy, but I won't have both girls in a hospital - that's gross and just not an appropriate place for a 4yo. Nor do I want Mady seeing Annabelle in the hospital. It isn't necessary. 

On the way to the hospital I talked to a friend briefly before hanging up to navigate the chaos of Broad Street and the construction of 11th Street, etc. During that time, Annabelle had been talking to me when I looked back in my mirror and she started dropping her head.. I could see her trying to open her eyes but couldn't lift her head. At one point she sat up, but by the time I got into the parking deck, she was out again. I ran to the side of the car to pull her out and she was limp - completely unconscious. I laid her down to make sure she was still breathing and she was.. I scooped her up and ran towards the Pediatric ER where everyone was waiting for her. By the time I made it thru the door, she was starting to wake up and sit up.. still very disoriented but at least conscious. 

We checked her weight and vitals - I met a nurse and a couple doctors right away. We began an IV which fortunately only took one stick - the nurse was amazing that began the IV - I was shocked she got it right away with no issues. The entire process took about 20min though.

When the doctors and I started talking, they were baffled that her WBC (white blood cell) and RBC (red blood cell) count were normal but her Platelets were so high. They kept saying, "there may have been an error .. something may not have come back correct", we decided to reconfirm everything just to make sure since they were hesitant. Two hours later, all labs were back and they all confirmed the exact same, her Platelet Count was still shy of 700,000 and they want numbers no higher than 400,000 for children her age. 

We met one doctor and he was wonderful beyond belief. He asked so many questions that brought to light many things I hadn't considered. 

• My pregnancy complication - Hyperemesis. Very high AFP Levels, Initially indicating Spina Bifida. Pre-term labor. Several unsuccessful (chemical) pregnancies before carrying Annabelle.
• NICU - GI Issues during NICU stay. Stomach not emptying. Not moving meconium until day 4. 
• Family History of a laundry list of health, genetic, and Endocrine issues.
• We were at the zoo not long ago - she fed birds(?)
• The Elecare Jr and Neocate Nutra were new to her diet and started shortly before all this began
• Her upper and lower endoscopies were performed right before all this began

There were a lot of things that we tossed back and forth together. He was passionately concerned about Annabelle but truly didn't know where to begin. His biggest concerns were seeing a Geneticists and a Neurologist. He didn't see as many Endocrine concerns but definitely didn't rule out the need to go that route as well. His biggest concerns were the fluctuation in temperatures and symptoms that weren't disappearing but just adding on. He wanted her admitted, if nothing else for, "Failure to Thrive". He left the room and I felt like we were on a good track.

Then another doctor joined us about an hour later, I was expecting her to give us information about being admitted, instead she starting telling me things to do for fevers and to keep an eye on her.. I was confused, "Hold on, you're not admitting her?" Suddenly the ER had a change of thought and said, "Bloodwork is normal" - Wait, how?! There's nothing normal about that! You said it yourself hours ago! What about her high temperatures?! The doctor told me to just use Ibuprofen like we've been doing. What about the low temperatures and losing consciousness? - Wrap her up in blankets until it comes back up. "So you're really telling me that you're going to send her home like that and not figure out whats going on? Not one test? You've done nothing here but reconfirm the bloodwork we already had done yesterday!" She apologized and said they just won't admit her. I demanded she go back to the drawing board and try again. I can't leave this hospital with Annabelle on a good conscious, something is wrong with this baby and you know it! You cannot tell me she is ok, you need to figure this out! The doctor said that because it didn't appear life-threatening, they cannot justify keeping her, that she can wait for an outpatient visit. Freaking incredible.

Midnight the same doctor came back in. She apologized. She called several different departments trying her hardest and demanding to speak with the attending (is that right?) and even they denied keeping Annabelle. The problem with Annabelle's case is that she does have an issue, but we have no clue where to begin or where she needs to be directed - Endocrinology? Neurology? Genetics? Pediatrics? We have no clue, we don't know because we haven't tested - but because nothing is confirming one department or another, no one wants to pick her up to take on the case. And since no one wants to take it, we were sent home.

I drove home last night numb. My mind keeps going to a very scary place where I start to think, "Maybe I am over thinking some of these things.. maybe there is nothing to work with and she is fine. Maybe I am putting Annabelle thru this.... enough doctors have thrown in the towel on her, I should just listen to the professionals and take my baby home and just enjoy life with her... " - Sleep deprivation will make you think crazy things like that, so I've learned. 

When I was almost in my driveway with a sleeping little girl in the backseat, my phone rang. It was after midnight and my pediatrican was calling my cell. She was worried and wanted to know how things were going at the hospital. When I told her we were home, she was mortified! I asked her exactly what I had just been thinking the entire way home, and if Annabelle was really as sick as I was fearing she was. I haven't slept in weeks and to be honest, my mind is just shot - days run together - I can't remember to do simple things to save my life and second guessing just how bad some of these issues are seem to be haunting me. The words my doctor started to recite, quickly brought things back into perspective and reminded me that she as a mother, and as a doctor was concerned as much, if not more than I am. I started to get worried again, and I remember, "No Ashley, you're not crazy. Annabelle was very unconscious and not just heavily sleeping when you arrived at MCV" .. I started to vent to the poor pediatrician over the phone, "What if this high platelet count is because of a tumor, and we've never done one scan to make sure she's clear!" She paused for a while.. I asked her why she wasn't talking and she finally confessed, "Ashley, please don't worry because I don't want you to panic at all. My biggest concern about what Annabelle is going thru is that her temperature regulation isn't normal and her growth is odd. These two specific things raise red flags to me for one specific reason. The Hypothalamus regulates your body's temperature. The Pituitary Gland produces your growth hormone. Both of these things are located next to one another in the brain. High Platelet counts can point to tumors - The first concern I had initially was this, her bloodwork that came back is not giving me much reassurance that this is not what we are dealing with. Ashley, please do not take this worry onto yourself, but do not overlook the severity of what you are dealing with. You are fighting and doing everything you are supposed to. At this point, since Annabelle still has not had any scans or tests, and it doesn't seem as though a hospital is going to give you the attention Annabelle needs - I will just do it myself!" I was shocked when I hung up the phone with Dr. Young, but I appreciated her honesty. I am not terrified, or worried. I know if I start googling my child - I will find the exact same thing, so I can't be upset that my pediatrician confirmed what the internet would tell me. I love that she is staying on top of all this .. more than I am. Because the last thing I will do is WebMD my kid. She does need attention though and thank God I have a great doctor on my side and fighting for her. I certainly cannot do this alone. I don't know how to fight this battle, I am trying and I am learning along the way - but I am in over my head. I feel like my pediatrician is my best medical advocate right now and thank goodness for that. She is a great mother to an infant little boy and a wonderful passionate doctor to my little girl. I can't ask for anything more for my daughter.

When we got home, we plugged in Annabelle's Angel Care Monitor in case she stopped breathing. I was certain I wouldn't sleep last night. How could I? What would happen if her temperature spiked or dropped during the night? I could never forgive myself if I am downstairs sleeping and Annabelle is upstairs in danger. Gosh it was a miserable night. I think I slept in 30min increments. I stared at her on the monitor all night.. I made sure she was wiggling around. I couldn't rest knowing my daughter needs help. I couldn't wait for the sun to come up so I can get up and begin the next day of fighting for help.

Mom and I talked first thing this morning. She will consult with some more Endocrinologist and see how far she can get. I don't know how successful it will be, but it's worth a shot. I also talked to mom, which is a nurse btw, and ran the tumor/growth/brain issue by her and she also agreed that is her biggest concern about what is going on (why don't people tell me this?!) We are all on the same page that we just want this possibility ruled out. If we can rule something like that out, I think we will all relax just a bit. But until then.. too many red flags just keep bringing us back to the same concern.

I called our GI at CHKD and wanted to at least get their opinion or insight on what is going on. I wanted our GI to be updated with the latest on her condition. And although I know this doesn't seem incredibly GI related - even if they can offer another perspective, that is welcomed. These things began soon after her last scope.. her formula is new to the diet.. lack of actual food is a change.. all things that *who freaking knows!* could be contributing to whatever is happening. The nurse did discuss with me, that when we come down on July 16th to begin Patch Testing that Dr. Konikoff wants to definitely see Annabelle at that time, so I will add that to the calendar. Back to today's issues - she is going to discuss with Dr. Konikoff what is going on and get back with me soon.

I texted our Pediatrician around 7:30a, "Belle is still asleep fortunately, getting plenty rest. I don't know where to begin today. Endocrinology? Neurology?" She called me right away and like the golden woman she is, she told me, "Hunny, go relax and squeeze that baby. Get rest, drink coffee, let me do the work today. I have a team in my office and their only focus is getting this addressed. We won't stop until we get answers we are both happy with. Trust me."

She called back 15min later and said, "Get a pen. Ready? MCV Children's Hospital. Next Tuesday at 10a you're seeing the best Pediatric Neurologist the state has to offer. Stand by, I am working on an MRI now." I asked, "Do you think it will be soon? A couple days, next week?" She told me, "Ashley. Go get a shower and get ready to jump when I say 'GO', got it?" Yes mam!! :)

So now we are waiting. Mady apparently also slept until 9am this morning.. Mady and Belle both slept in for the first day, and of course AK and I didn't sleep a wink. Of course it works that way, right?! I hope Mady is having a great day playing with her friends. I know she is. Annabelle has been completely full of herself and playing all morning. She suddenly just slowed down like she hit a brick wall, but I don't know she isn't just getting tired. Only time will tell if it's a sign that her temperature is about to begin moving, we will see. I am drinking my second cup of coffee and attempting to eat for the first time in two days. Who knew it was possible for me to not have an appetite?! Maybe I'm sick too! lol! Gosh I pray we get answers soon.. I really need someone to cut this stress and give us some sort of break and ability to relax. I cannot sleep or rest or relax until we do. It just won't happen. No matter where we are or who offers to help us out. I won't rest until my baby is taken care of and I know she is ok. I won't stop fighting until we have answers.