The night was uneventful, for the most part. Annabelle did wake up several times coughing and choking as she always does, only this time she would start to cry/whimper but then fall asleep mid-cry. I think she was so utterly exhausted, she just kept passing out. Which to be honest, I am grateful for, because I was equally exhausted and really needed the sleep too.
The pediatrician called around 7am to check up and see how the night went. She informed me that the St. Mary's doctor felt the need to call her late last night to explain the reason she felt it was ok to let Annabelle go home.. my pediatrician said the conversation was mostly 90% the doctor telling her how much she knew and then finally my Ped. interrupted and said "Thank you for calling, but I do not agree with you. Have a nice night, Bye." It's odd to me that the doctor felt the need to reach out and justify herself late at night.. maybe she was kicking herself that she was indeed wrong? I have no clue. It's not going to stop me from filing a complaint. Absolutely no other children should be overlooked the way Annabelle was under her care. The things that were happening on that floor absolutely terrify me, and to be honest, Im praying for every single one of those other children and hope they make it home safely soon!
The pediatrician and I discussed briefly what our next plan was. She said she would work on the Endocrinologist that was going to visit yesterday and if she was unsuccessful at getting an appt. soon then we would move towards MCV. I explained that my mother works IN Endocrinology at MCV and maybe she could pull some strings and see how far she can get..
I called mom and sent her on the mission. "You need to get Annabelle in asap. I need the BEST pediatric Endocrinologist MCV has to offer. Please!"
Mom went to the peds endo unit and began speaking with one of the nurses about Annabelle's situation - mid sentence, the lady stops her and says, "Wait a minute, are you talking about Annabelle Bishop?" Mom said "Yes, How in the world do you know?! She's been at St. Mary's the entire time, how do you know about my granddaughter?" The nurse then began to explain to my mom, Annabelle was the top study case that Endocrinology was taking on all day yesterday. They were all prepared and ready to take on her situation and put all their brains together in one room to figure out what was going on and find an explanation to all this madness for Annabelle. The nurse told mom, "You need to call Lexi at Peds Endo at St. Mary's immediately and explain the situation! She is the nurse coordinating and leading this case and she has lots of questions as to why yesterday didn't work out!" Mom got the number and called me back. I was so upset I was shaking when I learned this. I called Lexi right away.
Here's what happened: The BEST Pediatric Endocrinologist that MCV has to offer is Dr. Kumar. Dr. Kumar went to St. Mary's and THAT is who Annabelle was seeing. Dr. Kumar was coordinating an effort between St. Mary's and the best MCV physicians to figure out Annabelle's case. He had MCV on standby waiting to get started.. however. I learned from Lexi - Dr. Kumar went to the Pediatrics Floor yesterday morning to see Annabelle. At that point is when he was denied a visit to see her and turned away. That is when the entire effort ended. I was never even aware it began.
I'll pause for a minute so you can also pick your chin up from the floor and stop pulling your hair out.
Done? Already? Because I wanted to scream for about 10min straight! .. No, don't drive to St. Mary's and bless that doctor out.. I thought about that too. Karma and my nasty-gram of a letter will handle that.
Better? Let's move on.
Lexi said Dr. Kumar does not want to not continue taking Annabelle's case. He needs more information, as much information as I can possible collect to begin. She asked how many medical records I have. I tried not to laugh.. I have books of records. She asked how soon I can fax them, and I said "give me 10min". She also asked for me to contact every doctor Annabelle has seen and have them do the same. She will give the records to Dr. Kumar and we will begin with what we have. She will let me know what to do / where to go next.
I collected all my documents as fast as I could. Half way brushed my teeth and threw a baseball cap on my head and jumped in the car. I looked worse than roadkill but I didn't care... I flew into work because it's only 8min away to use their fax machine. On the way there, I called every one of Annabelle's doctors and they all started faxing over information.
I chatted at work for a bit.. and enjoyed a much needed cup of coffee while waiting for a confirmation that the fax of 65 pages went thru successfully.
Once I received the phone call from Lexi that everything was received, I headed home. I asked Lexi what she thinks is going to happen, and asked her opinion on Annabelle's case. I wanted to know, point blank, do all these red flags REALLY point to Endocrine Disorder?
The growth, absolutely. That's the first concern that we have an Endocrine issue.
The fevers. I told her "Annabelle was potentially exposed to a virus last weekend.. she really could have just caught that to give her the fevers". But what Lexi explained is: "You need to consider two things: Annabelle has an auto-immune disease, it doesn't know what to do and how to process a new virus. If she were truly exposed to a virus.. she would likely be declining even faster. Vomiting, etc. It wouldn't be resolved. The Endocrine concern is her body is not regulating her blood and temperature appropriately. There is nothing at all normal or even safe about a temperature that fluctuates the way Annabelle's is. Annabelle's 21mon old, right? She's cutting teeth, isn't she? For normal kids they may run a mild temperature when they are cutting teeth. This could possibly be what has triggered her body to run a temp. but her body to do so as erratically as it is - is the issue. If the reason she is running a temperature, is because she is cutting teeth - you don't know the next time her temperature spikes, that it will not spike to 105+, it's already proven to be out of control with or without medications, and for that reason, this is an emergency to not look at this lightly. A high temperature, a low temperature or cold sweats, all tell us the exact same thing - her little body is attempting to work the way it should, but something is wrong and not processing correctly. If, and when Annabelle's temperature moves at ALL in one direction or another, you need to have her in MCV IMMEDIATELY! Do you understand?"
I was speechless. I didn't really know what to think, I hadn't wrapped my head around that thought process yet and to be honest, it scared the crap out of me! Virus / Molars / just being outside in the hot weather .. her little body really is struggling, and this is VERY serious! God, my poor baby!!
Lexi told me that as soon as I have the slightest concerns, to take her to MCV. I agreed. She said that Dr. Kumar will absolutely want to see Annabelle soon. I understand that, but I begged Lexi to allow us to go somewhere other than St. Mary's. Dr. Kumar is at St. Mary's and I refuse to check back onto that floor. I begged to allow us to go to MCV if / when that time comes. I also begged and pleaded to allow us to stay home until absolutely necessary. When they are ready to see her and truly begin running tests, at that point we will come in. But I do not want to pack her bags and check into a hospital to sleep, sit around and wait. I have another little girl at home, and need to prioritize keeping normalcy in our home as much as I can under the circumstances. Home is the best place for Annabelle to be, in her own bed with her own toys. Lexi agreed and thanked me for having this approach and taking this charge for my daughter - she said she would try her best to provide Dr. Kumar with all the information necessary to begin working and when they were ready to meet Annabelle personally, we will bring her in. I just hope we can avoid going to St. Mary's.
I got home from faxing at work and Annabelle was running around. Her smiles and belly giggles make everything absolutely worth it. A friend talked me thru a really hard time yesterday when I felt like I was hitting a wall. She agreed and sympathized that Annabelle looks so healthy on the outside which makes it hard to grasp just how sick she is on the inside. But she offered a different perspective to that, and Ive been reciting in my head ever since. Annabelle isn't laying in a bed emotionless. She understands absolutely everything that is going on around her and for all practical purposes, she is a perfectly normal kid. She likes books, being tickled, she's learning new words, she's obsessed with sissy and will dance every time she hears a good song. When you look at Annabelle, you see a normal little girl, who wants to be happy. You are fortunate to watch her smile and laugh during good times and those are what gives you the motivation and determination to keep pushing forward.
When I see Annabelle, I see a beautiful little girl that has so much potential to offer to this world. I take Annabelle to other kids birthday parties and she claps "Yayyy!" when they blow out the candles. When Annabelle turns two in September, I want her to be able to have a birthday cake like she should. When were all eating around a table, I want her to be able to use a fork and enjoy my excellent / sometimes crappy, cooking. I want to be able to take Annabelle to the park without wearing a face mask and watch her giggles and smiles as she runs thru the mulch and down the slide. I wish I could go into her room and just watch my baby girl sleeping and resting like her big sister, instead of having to go into her room each night to console and wipe her tears. I see a beautiful little girl in Annabelle, I see the most annoying and fiesty little sister to Madelynne. I see her papa in every bit of her face and I see my head of curls behind her neck. Annabelle gives me SO much to fight for. With every single giggle, I find even more motivation to fight even harder. And not only for Annabelle. But to fight for our family. To fight for Madelynne. To fight for all these brave little kids that are suffering with Eosinophilic Diseases and may also be fighting undiagnosed Endocrine Disorders. I hope what we learn and find will help another little boy or girl on their fight someday. Annabelle is going to help so many people, and I cannot think of a more proud position I could take in this life, than to help her get there.
Annabelle laid down for a nap soon after I got home. Another girlfriend called and asked if I would like to go grab lunch. I looked at Belle and said, "Yes, I could really use the fresh air". It was a welcomed break away from the last several days chaos. I would be lying if I said the screaming, screeching, tantrums, and diaper changes.. bottle washing.. medication administration wasn't beginning to wear me down. I needed to get out to recharge a bit. I love my kids and family more than life but we all need to get away at some point. I was drowning in medical conversations and big words I am struggling to pronounce, Im positive my blood pressure hasn't returned to a normal level since being in the hospital and I would really like to have a conversation that DIDN'T revolve around Annabelle's current situation.. I know that sounds bad, but I needed the break.
The entire time I was out, all I could think about was Madelynne! Gosh I missed that little girl, my little 4yo BFF. I missed her so much, that as soon as we walked into The Children's Place, I found 3 dresses she just NEEDED :) I got home and Mady was home. I was SO happy to see her! Annabelle was so happy to have her home as well. I missed having both my girls in my arms. Mady and I watched a movie together last night.. well, I tried to update the blog and watch the movie along side her. She got to stay up late with mommy and daddy and enjoyed the privilege of being a 'big girl'.
Annabelle was in bed by 6:30pm and fell asleep within seconds of her head hitting the pillow. She was so darn tired, she just couldn't hold on any longer. Im so glad we are home. SO happy to be where we all belong.
Now we wait. I pray Annabelle doesn't give us reason to have to prematurely go to the hosptial before Dr. Kumar is ready for her. I pray the team is ready to begin tests and see her soon.. I pray we find answers soon. I pray, I pray, I pray this is the beginning of the next step for us! I really believe it is. It's almost as though I have butterflies of anticipation for the near future.
No comments:
Post a Comment