Sophie Update... IS ANYBODY OUT THERE??

How do you begin to process this? Sophie has been sick since September 12. It's been one month today. We were ordered by her pediatrician to get seen in the Emergency Room after our office visit yesterday. Sophie had been feeling very sluggish and tired after having to go home from school mid morning yesterday. She had missed a lot of school this year so far, so in spite of her having her usual "headache, tummy pain, dizziness and sluggishness", I told her to suck it up and get to school. She didn't have a "fever" it was only 99.5, so I gave her Motrin and sent her on the way…

Well at 8:45am I got a phone call from the nurse. Sophie was there, and she felt terrible. She got on the phone and spoke to me in her puny voice, "Mommy, I don't feel good", I told her that I thought it might be the new medication they put her on and told her to lay down, get a glass of water and something for a snack and then to call me later. She called later and said she was MUCH worse.

She went home to my mom and dad's house and my mom called and said she had just thrown up a LOT. She said that Sophie was asleep but looked like she felt TERRIBLE. So I decided I would go home at lunch and assess the situation and go from there. I got home and saw Sophie lying on the couch and she was completely unaware of her surroundings and was sound asleep. I woke her up and asked what all was wrong. She said, I have a terrible headache, tummy pain, dizziness and I can't stay awake. She also said she was itchy all over. I decided I needed to take a ½ day and got her checked out at the pediatrician's office.

Sophie laying on the bed at the pediatrician's office. I can just see the worry on her face.

On the way into the pediatrician's office, she almost fell down twice and I had to catch her. I escorted her into the office, and helped her take a seat. All the while she clutched a bucket to throw up in just in case. We also had brought some wash clothes just in case there was "something" that might need to be cleaned up. So I checked her in and she continued to look pretty tired... leaning her head on me and then the back of the cushion. Luckily for us, it was the first appointment after lunch, so we didn't have to wait long. She was starting to look pretty green, so we were glad to get to a room where she could lay down.

The nurse came in and started to triage her. I said she's about to throw up everywhere, so I'd be grateful if you could just look in her chart and READ before you start asking me 100 questions. And, I had written out a nice little "cheat sheet" with all of Sophie's current meds, dosing, her doctors and their telephone numbers on them as well as her list of current symptoms that day. She looked at me like I was crazy, I said "We've been at this since November of last year, cataloguing symptoms and medications… you get good at it" she thanked me, took Sophie's vitals and then the doctor came right in.

Sophie liked the young doctor. I told her I had given the nurse this paperwork that might assist her in assessment, and she said that she would definitely take a look as well as at Sophie's chart. She reviewed Sophie's information in the symptoms… and Sophie began to fall asleep lying there. I told the doctor, this just isn't LIKE her! And She felt around on Sophie's tummy, looked into her ears and eyes, nose and mouth. She said her throat was red, but that she was more concerned with the enlarged spleen and LOW BP's.  So, the young doc went and got Sophie's pediatrician who knows us well. She said that she definitely thought Sophie should go over to the ER to get some labs & possible CT or Ultrasound. Sophie was still so dizzy someone had to help her to the car.

Sophie felt realy puny yesterday. Still managed PINK for her IV, though. Girl's gotta REPRESENT!

The Child Life Specialist at TCH, who made Sophie feel so much more comfortable. What you don't see on Sophie's outstretched arm is that the nurse is drawing 12 tubes of blood! Yikes!!!

 We got home after 9 hours of running tests on my precious Sophie with very few answers except to follow up with the pediatrician and Dr. McClain's (her oncology) team this week. In the mean time, Sophie still feels terrible, with nausea, weird rashes, abdominal pain, enlarged spleen and dizzy and I'm praying that someone sees SOMETHING on all these tests that might point to a reason! I'm so tired and worried. Sophie is home now, still feels AWFUL. She has a terrible headache and is very dizzy and lightheaded and though the spleen was on the large side of normal on Ultrasound, when we were in the office (Oncology and pediatricians) no one was even concerned about her spleen, so I believe in my gut that the spleen is enlarging, and that may be part of what is making her feel so rotten. The other factor is that her blood pressure readings are low 91/50 & 81/48 while she was resting prior to discharge. They came up to 105/55 when she was sitting up, but they didn't give any fluids or anything, so I am still concerned because of the dizziness/lightheadedness. She can barely walk, she's so dizzy. Normal for her is 115/78'ish... They gave her Zofran for nausea/vomiting when we arrived, but no fluids were administered. A bunch of labs were drawn and a sinus wash was done as well. An abdominal ultrasound was performed and they sent us home with three prescriptions for stomach issues in hopes that they might help.

Some of the most frightening numbers I've ever seen, though I know it could be worse.

I am praying in the name of Jesus that she is all right. She is going to the Pediatrician and the Dermatologist tomorrow. She's having a few punch biopsies in the morning and then her follow up with the pediatrician in the afternoon. We just HAVE to be able to figure this OUT!!! She still has a low grade temp and a myriad of symptoms this morning. Meanwhile my heart is breaking for my baby girl.

The last time she really felt well... First day of School 2011

Baby Sophie 2002, Easter

Dear God,
The storms that come about in our lives do not make me doubt YOU!!! I do not doubt WHAT YOU DID for ME on the cross. You still changed EVERYTHING for me when I realized that YOU love your children enough to send your only son to DIE for MY SIN! How could I wonder about who you are and why YOU would give Sophie and Aiden these illnesses, when this isn't of YOU at all? I know the NEW covenant and know that the promise of Jesus is to bear our sins FOR us (and our children), not to punish us for it. I want You to be with me right now dear Lord. Be with me, and be with my precious children, Lord. Be with them as they face the most difficult trials they have ever faced!!! Be with me, and walk with us as I see them through this. I only have the power to help them because I love like YOU showed me to love by loving me first! All I can do now is show love to the ones I love, and even the people I don't. All I can do is empty all my selfish thoughts and wants out at the base of the cross and fill myself with Your grace and Your peace. It's by that and that alone that we will be able to face anything, and I thank YOU, God. Help me to show Your unconditional love to my children and please give us peace.

Amen

Goodnight friends,

J