Phoebe woke up this morning and her face was really round and swollen, her eyes were sunken in with dark circles underneath them and she did not have a lot of energy.
Something told me to check her neck to see if any more nodes had grown or if any of the ones that are already enlarged grew any more.
My heart sunk as soon as I felt her neck. Two areas with protruding masses. And as her history has proven, what is visible is never the whole thing. Their size is always much bigger, buried into her neck.
The last time they got this big multiple nodes had fused together and she was barely eating or drinking because of the difficulty it gave her swallowing.
Phoebe is a preschool graduate!! It has been a long hard road, and many times we did not think we would see this milestone! But with the amazing special education program in our school district, Phoebe was able to attend preschool in a program that made a schedule that fit her medical and physical needs!
This is first school year that Phoebe has been able to be a student and attend from September through June!
Even when she missed the whole month of November and when she started a trial of the immunosuppressant, they brought her schedule down to one day a week. And when they went to increase her days, they did it slowly and at a pace she could handle that did not overwhelm her system!
We are so blessed to be a part of this program in our school district! It is allowing Phoebe the chance to experience things we never thought she would get the chance to!
In the fall Phoebe will start Kindergarten at her home school, and her team there is already starting to put a program and schedule in place for her that will be based off of her health, physical abilities and with complete guidance of her doctors!
#Roar #PreschoolClassOf2016 #GraduatePhoebe
It was a rough night for Phoebe. She tossed, turned, cried and whimpered in pain for hours. It also took like what seemed forever for her fever to finally break.
She continued to take ice chips and sips of water through out the night, so luckily she did not dehydrate.
This morning we went to her pediatrician. As she lay curled up on my lab in the exam room, we learned Phoebe's not just having one of her flare ups...she also has strep throat and an ear infection.
She is basically going through a giant storm, and each issue is playing a part in the other two.
She started antibiotics right after we left the office and had her second dose shortly before going to bed.
She is already starting to feel and act like her normal self again. She has also not complained of throat pain.
Please continue to keep Phoebe in your prayers as she continues to fight the infections during this flare up.
Phoebe was on the mend yesterday and this morning. She was getting a little more energy ever day, drinking more, and the swelling was going down.
Unfortunately, this evening she took a turn in the opposite direction.
Her high fever is back, she has been crying hysterically that her throat hurts and that it hurts to swallow. And she asked for "the blanket".
And because of all of this, her already enlarged nodes are even bigger.
She is taking ice chips/chunks and letting them dissolve in her mouth, and slowly chewing them.
We gave her motrin and hopefully with the ice chips and sips of cold water, she will hold up ok until we can get to her doctor tomorrow morning.
Please continue to pray for Phoebe. It absolutely breaks my heart that she continues to go through this and we don't know why.
Phoebe was discharged from the ER in the early morning hours. The fluids they gave her helped to hydrate her and lower her heart rate.
Her lab worked showed her usual, leaving the doctors and nurses puzzled as to the exact cause of what brought this on.
When she woke up this morning her smile was back, the swelling had started to go down, and she had some of her spunk back.
She's taking it easy and sticking close by me today since she is still tired from last night, but it is such a relief to see her starting to feel like herself again.
Thank you for your prayers! Please keep them coming!
For the past few days, Phoebe has not been drinking as much as she should to stay adequately hydrated in this heat. She was only taking in just enough to keep her at the minimum acceptable I&O. Tonight, though she had been drinking better earlier today, she grabbed "that blanket", the one she always goes to when things are turning bad fast. We took her temp and it was over 102. Not taking any chances, we headed straight to the ER.
They have started an IV line to do some blood work and give her fluids. She feel asleep shortly after getting to the hospital, and she amazed her nurses when she didn't flinch or cry while they started the line.
The fluids are to help with her dehydration and high heart rate. They also gave her tylenol to help with her high temperature.
We are still waiting to see the attending on duty tonight and to learn what their plan is for her.
Please keep Phoebe in your prayers!
Phoebe was accepted into the Undiagnosed Program at the NIH in Bethesda, MD!!!
Her immunologist sent a referral letter with a large packet of her results, images and pictures down in May. They had initially told us they would be making decisions in October, so when we didn't hear anything by the end of December we just figured she didn't get in and we wouldn't hear anything from them.
Last week while I was at school I received a voice mail from her Immunologist that stopped my heart. "You need to call the office back immediately." Knowing that her doctors are always working on her case, trying to figure out what tests to do next and that labs still have samples of her blood I became scared. What test did they run? What results do they have? Should I leave school and miss check off? With fear and worry racing through my mind I called the office back.
"Mrs Green, today we received a letter from the NIH. Phoebe was assigned a team of doctors with the Undiagnosed Program. I have your case managers contact information so you can call them right away."
Phoebe has a team at the NIH! A team that opens up specialists, researchers, science, testing, information and services that have been unavailable to us for the past 3+ years!
I spoke to the case manager this week about what our next step is. The lead doctor on Phoebe's team wants all of her medical records from birth. Once she reviews them she will set up a plan of tests she wants to run, specialists she wants us to see, when she wants us at the NIH and how many days!
The best part...as if there could be a better part to this, but there is...everything at the NIH is government funded and isn't done through insurance! Which means every doctor we see, every test they run, every procedure they do at the NIH is 100% free for us with no insurance denials! Our only expense will be gas, food and lodging for our time down there!
While this doesn't take away any of Phoebe's medical expenses while at home with her normal team of doctors and hospitals...this is still a huge relief!!
Now we just have to receive the forms so we can release her medical records to the NIH and wait to hear when our appointment will be!!
Thank you everyone for all of your prayers, love, encouragement and support! You all have helped carry us to this point! #RoarWithPhoebe
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.