After my last post, things seemed to be looking up until Frankie's fever and rash persisted. They were relentless. They would not go away. I took Frankie to the ER at a local hospital once again because she seemed dehydrated and her fever wouldn't go down, even with alternating Advil & Tylenol. After an IV of fluids and a test for strep, they let us go and said it was probably a virus causing the fever.
A few days later, I took Frankie to Children's hospital in Plano because her fever was still high and she was dehydrated, once again. I'm so glad I took her in again because by the time they had a room ready, she had a temperature of 107! Forget transferring her to the ICU...they wanted to transport her to Children's in downtown Dallas because they had a team of infectious disease doctors. They knew our history and that Frankie has had this mysterious fever and rash now for weeks. ID doctors are supposed to be some of the smartest docs on the planet so I was thrilled that we would possibly be closer to getting some answers and treatment! As we were loading her up in the ambulance (I was sitting shotgun next to the driver,) one of the guys in the back that was tending to Frankie said something to the driver via radio. The driver got out of the ambulance and I quickly opened my door and ran to the back to see what was going on. They said Frankie couldn't be transported to the hospital...her blood pressure was dangerously low. I think at this point I couldn't feel my legs and everything around me was blurry. Was I about to have a panic attack? There was no time for that. They rushed Frankie back inside the hospital into their ICU area. I had already called Mark and he was on his way from work to Children's downtown. I remembered to call him back to tell him we were staying at the Plano hospital and to NOT head downtown. Deep breaths. Slow breathing. I managed to stay composed.
The next day, Frankie was finally able to be transported downtown. Once we arrived, we were put in this tiny room and every time a nurse walked in, they had to put on this yellow gown and mask. We secretly called them minions because we needed to laugh at something! Every person that entered the room had to wear those gowns/masks. We soon learned that Frankie was in quarantine because nobody knew what was going on and she could possibly be contagious.
That night, Mark slept on the floor and I felt so bad. I had a couch to sleep on. We had asked for a bigger room or even an extra recliner but they said they didn't have any. Sleeping comfortably was truly the least of our worries tho...we were hoping that someone could tell us what the HECK was going on with our daughter!! What does she have? A virus? Pardon the medical terminology but Frankie's neutrophils were at ZERO. Yes, ZERO. Her platelet count was extremely high and lymphocytes were WAY out of whack. Could all of this be a side affect of the tryleptol--the anti seizure med that we added a month ago? We had taken her off of this medication not knowing if it was toxic. Kawasaki disease was still on the table too so the doctors ordered an ECHO of Frankie's heart to rule this out after she was stabilized.
I have to say the sonographer was SO very kind. It was nice that he came to our room, well..maybe he had to given she was quarantined. When the procedure was all over, he let Frankie use his instrument to pretend as if she was giving herself an echo. She really enjoyed that. He even said I could videotape it, which I did. Wait, can you see his minion cape in the photo? ;)
Bloodwork was done around the clock and we were told an oncologist and rheumatologist were going to meet with us the following morning if Frankie's numbers didn't improve. A spinal tap would have to be ordered. I gulped. I googled like crazy because I had the lab work numbers in front of me. I wanted to cry. Well, I did cry. I noticed Frankie's liver count was WAY off in addition to everything else....Could she have leukemia because of the crazy platelet numbers? Is this why the oncologist is coming to talk to us? That night was one of the longest nights ever. I got on my knees and prayed. God, NO! Don't let her have a terminal illness. Please heal her! She's a fighter. She will be fine.
Did I mention that next morning would be Easter morning? Meanwhile, we were trying to play games with her, even allowing her to put on my makeup!! I kept trying to keep her mind off of the IV that was in her arm for days AND that we were confined to one room. I honestly think I was more bugged by this than her. How selfish!?
There was a really nice guy that kept visiting us periodically. He's an infectious disease resident. He, too was a minion! They all had to put on those yellow gowns and masks. I really liked him because he made me laugh (would throw in a joke or two,) and he would mention his thoughts on a possible diagnosis. He threw out things like...maybe she has celiac disease. Maybe this IS Kawasaki disease after all. I felt like I could talk to him like a friend so I begged him to walk down the hall and go check to see if the lab work from that early morning was in. Pa-LEASE!? Can you??
Within an hour, an oncologist came to our room. I really didn't want to see him. I was hoping for an ID doctor to come in and give us good results. I glanced at the oncologist with a fake grin, he looked at me, then at Mark and smiled. He introduced himself and said that Frankie's numbers significantly improved. No spinal tap was needed. He was convinced that we were dealing with some sort of virus, rather than a form of cancer. Can I just tell you how RELIEVED I was? Mark had this look on his face I can't describe. It was one of the happiest days of our lives. It was our Easter miracle.
We were definitely not out of the woods though. The rheumatologist came to our room later that morning to talk to us. She examined Frankie thoroughly. They had to rule out a certain types of autoimmune diseases that could strike with early symptoms such as the ones Frankie was presenting. Thank goodness, they were ruled out for now.
As the days progressed, Frankie continued to improve. Her fever subsided and she slowly came back to her spicy self. On April 18th, I got the best birthday present ever. We were able to be discharged! We happily left the hospital, even though we were extremely grateful for the team who possibly saved Frankie's life. We later learned she was septic.
As we drove off from the hospital, I quickly rolled down the windows of the car. It was our first time to breathe in fresh air in 6 days. It was amazing! I wanted to sing and scream out of happiness. I wish I knew what Frankie was thinking but she was smiling. And giggling. That's all that mattered.
When we drove up to our driveway, one of my besties Amy was placing something on our porch. BUSTED! Our front door was adorned with flowers and gifts from family, neighbors and friends...none that were needed, but much appreciated!Best part of all? We were HOME and healthy.
Because of this crazy medical mystery, I asked our neurologist to order a genetic test for the MTHFR mutation. Actually, my sister, Carissa did. She was able to go with me to our follow up with appointment with Dr. Jan. We go over the test results tomorrow. I have read and studied many of the results that are in and they are fascinating. I will definitely write about them during my next post.
Aside from all this medical stuff, we were able to watch my niece graduate from high school and spend a week on the beaches in Florida. This trip was amazing and much needed! Frankie has always been a beach baby, thank goodness. We took in the fresh air and rarely thought about our real world. It was our little paradise.
Rewinding a bit...A LOT has happened at school since my last post and with our ARD meetings. These are meetings that teachers, specialists and parents/caregivers have that go over academic goals for children that qualify for special education. I don't want to use this platform to get into details, but we are hoping for a brighter year in the FALL, and for more resources for Frankie.I will definitely post more later.
Not surprising to us, Frankie qualified for Summer school. Her last day was last week. Let our Summer begin!!! It was a three week program that focused on literacy and reading. Frankie loved her teacher, but he left after the second week! They had a substitute the last week. The most rewarding thing was that she met Kaylee...a neighbor and now best friend that was in her class. I know these two are going to be tight and hoping they are in the same 1st grade class in the Fall.
We continue to have fun at our neighborhood splash pad, pool and park. We will be leaving to McAllen/beach in a week to sneak in one last vacay in before school starts on August 16th. Seize the day, right?! This Summer is already flying by.
(Thank you, Sara Van Buren for this photo of Frankie!)
I have to leave with this.
Yesterday morning, Frankie said this while she was sitting down eating breakfast. Keep in mind she still struggles with speech. Sometimes, she has a hard time finding the words she wants to say.This can be frustrating for her. So here's the dialogue I wrote down and can't stop thinking about.
Frankie: "Mommy. Last night I went to the ceiling." She paused. "To see Jesus."
Me: "What? Really? Were you flying?
Frankie: "Yes. And I didn't come back."
Me: "What? Why? Why didn't you come back?"
<silence>
As soon as she said this I wrote it down. I was shaking. I called my sister, Carissa and had her talk to Frankie. I was hoping she would possibly open up and tell her more. She kept going on with her story...I'm guessing it was a dream she had or a visitation from HIM.
