-Meredith Grey, #GreysAnatomy
"Don't let fear keep you quiet. You have a voice, so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence."
-Meredith Grey, #GreysAnatomy
It has been a month since Phoebe was hospitalized for four days for mouth ulcers and the perilous toll they were taking on her body. The pain from these ulcers was so severe that she did not eat or drink for three days, dehydrating her, and causing her glucose to drop to dangerous levels. The cause? The medicine she was on to try to give her relief in her normal daily life.
At her follow up discharge appointment with her immunologist earlier this month, they officially stopped Phoebe's medication. The ulcers are a side effect that effects 15% of patients. With Phoebe falling into this 15% and how severe they affected Phoebe and the condition it put her in, her doctor felt that it is not safe to restart the medication.
While I absolutely agree it is not worth the risk to restart this medication, the decision to stop it has put us back to where we were in October... no answers, no treatments, and no relief from the pain and swelling for Phoebe.
On the 12th day of #RareChristmas Phoebe would like you to know...living rare needs more advocates. Rare patients and families do not tell their stories for sympathy, pity or praise, and they are not seeking attention to make themselves feel better or important. These strong, brave individuals are sharing their stories, their struggles, their life living rare in hopes of bringing change. Change that there will be more treatments and cures. Change that more doctors will know about these diseases and how to treat the patient. Change that insurance will recognize these diseases and pay for testing and medication. Change that those living rare and feel alone know they are not alone, that there are many rare families out there, and we are here to listen and support! Rare Disease Day is the last day of February every year, this year it is February 29. Please consider becoming an advocate, a voice for the rare disease community. VisitGlobalgenes.org, rarediseaseday.org, and/or rarediseases.org to learn more
On the 11th day of #RareChristmas Phoebe would like you to know...living rare affects 300 million people worldwide. Children account for 50% of rare disease patients. There are approximately 7000 known rare diseases. 95% of rare diseases have NO FDA approved drug.
On the 10th day of #RareChristmas Phoebe would like you to know...living rare connects us. While going on this journey we have met and connected with so many people who are experiencing similar situations. We have formed a support system for one another. To listen, to pray, to search for answers and treatments, to raise awareness, to be there through the good and the bad...together.
On the 9th day of #RareChristmas Phoebe would like you to know...living rare teaches you. It teaches you that people are denied treatments, medications, procedures and supplies, even for common disorders, because insurance picks and chooses what they will and will not cover. It teaches you that when it comes to insurance... blood tests are "unsafe", patients are always clinically diagnosable, and if what you have or need is not part of their specified list...it doesn't exist. It teaches you that to insurance, it's all about the money, not the patients health. And learning all this, teaches you to fight!
On the 8th day of #RareChristmas Phoebe would like you to know...living rare is hard on the whole family. When someone is sick, it impacts the whole family. The stress of not knowing, the worry of what happens next, the wanting to help but not knowing how... it affects and drains everyone. And when you are living rare, not knowing, wondering what happens next and not knowing how to help are a daily thing you are faced with.
Phoebe was discharged from the hospital today!!!!
Her ulcers are almost completely healed and while they are still bothering her a little, she has not needed any pain medication today!! She has been drinking more, finishing whole cups of water even, and she is eating more than just a few bites here and there!
She is also getting more of her energy back! She is up and moving about, bouncing and playing, laughing and giggling! Sights we have definitely missed seeing this past week!
It has definitely been a rough time since Christmas for Phoebe, but going home was the best way to ring in the New Year!
On the 7th day of #RareChristmas Phoebe would like you to know...living rare reminds you to celebrate the little things in life.! We are taught growing up that the best things come in small packages. Every little achievement, victory, step forward, good news and good moment should be celebrated! For it is these little things that build our memories and remind us just how truly blessed we are!
Today has been a better day for Phoebe. She started the day out similar to yesterday with being in pain, not really wanting to drink too much and not interested in trying to eat her meals. But as the day went on, she started to improve some.
She is still in pain, but it is now minimal and is being controlled with motrin. Depending on what she is trying to eat or drink causes her pain to increase, but she has not screamed or cried the way she was the past few days. She gets a few tears at most in her eyes, says "it's hurting my mouth" and stops eating or drinking what is aggravating the ulcer. It is also taking her a while to be willing to try something else when this happens.
The pain is still making her "gun shy" when it comes to eating and drinking though. She is on a bland soft food diet so she doesn't consume anything that could aggravate her ulcers, but the pain she was in those few days is something she remembers, and not something she wants to experience again. So you can see some hesitation in her when it comes to eating and drinking. She will take only a few sips of a drink at a time, and only if she has a straw that she can put behind her teeth and bite down on.
But through it all, she did really good today with eating. She had two bites of scrambled eggs for breakfast, a small rice pudding for lunch, a piece of bread with butter for midafternoon snack, and a small rice pudding, two bites of rice, one bite of mashed potatoes and one small bite of chocolate pudding for dinner, and for a before bedtime snack she had a small bowl of cheerios in milk.
She did better with her drinking today too. It's not where I would like to see her, but the doctors and nurses assure me that the baby steps with liquid are great! She has taken two sips of milk or water or milkshake every thirty minutes today. She has drank a total of 5 oz of water, half of a small milkshake, and 16 oz of milk.
She was still hooked up to the IV today, but they started to lower it's infusion rate gradually throughout the day so they could disconnect it after dinner tonight to see how well she does with staying hydrated on her own. If she can stay hydrated and have good intake/output overnight, there is a very good chance we are going home tomorrow morning! Just in time to spend New Year's Eve together as a family at home!
They disconnected her IV at 6:30 pm, so we just have to sit, measure her I&O and pray this will be our last night in the hospital!
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.