On the 2nd day of #RareChristmas Phoebe wants you to know...living rare means trips to the ER can be frequent and unavoidable. The pain became unbearable, eating and drinking only made it worse. Nothing was helping and by dinner time her cries were uncontrollable. Blood draws and IV fluid was needed, and we hoped the doctors could find the source of her pain and ease her suffering.
Phoebe went to the ER tonight. She was dehydrated, was not eating or drinking all day, had a low grade fever and her mouth was hurting her to the point she was screaming and crying in pain if a wipe gently brushed against her cheek. She didn't even scream or cry this hard when she had her tonsils removed three years ago. To hear the pain she was in was enough to break your heart into a million pieces.
The doctors in the ER found the source of her pain and reason she was not eating or drinking… she has ulcers in her mouth...four of them. Mouth ulcers are a common side effect of Phoebe's medication.
The doctor did not want to admit her to the hospital given her immune system and the immunosuppressant she is on. He also felt that we had brought her in early enough that we caught her dehydration in time that some IV fluids and a mouth rinse to coat the ulcers would do just the trick to help Phoebe bounce back.
Phoebe was still in a great deal of pain when we were discharged from the ER, but all we can do at this point is try to push fluids as much and as often as possible, and hope the ulcers start to heal so she can have some relief from the pain.
On the 1st day of #RareChristmas Phoebe wants you to know... living rare takes a lot out of you. A few hours of continuous excitement and energy on Christmas morning quickly turned into no energy and weakness by the afternoon, and ended with emotional meltdowns and tears in the evening because she didn't feel good.
Two weeks ago Phoebe's blood test showed that we had the right dose of medication for her levels to be in therapeutic range! Since she is in range, she can have her blood checked every other week instead of every week. So tonight we are at the lab to check her levels!
Even though she is still fighting that lingering cold, and is still experiencing swelling and pain she is so happy to have a decrease in the times she gets her blood drawn!
With Winter upon us, Phoebe always travels with a fuzzy blanket to help keep her warm.
While we were out doing some holiday shopping, we found this beautiful soft "Frozen" throw! It is the perfect blanket to help keep Phoebe warm and toasty when we have to go out!
As soon as we got in the car Phoebe insisted she use her new blanket! It is the little things, like this blanket, that help keep Phoebe comfortable and our travels easier for her to tolerate!
Phoebe's blood test to check her medication levels have come back! Her levels are finally in the therapeutic range at 8.7! We do not need to increase her dose and her blood tests can now be every other week! (She is very happy about that!)
Hopefully now that we have her right dose with the right therapeutic level, her symptoms will start to be controlled!
Phoebe's cold is still going strong. It has been a few weeks and she still has a cough and her voice comes and goes.
So today went back to the pediatricians office to make sure it has not developed into anything worse or settled into her lungs.
With her being on an immunosuppressant, we can't just assume it is a cold and that it will run it's course.
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.