Thursday, October 11, 2012

"I am just going to be honest and say that yes, I am in tears writing this blog tonight. The pain of seeing Emri go though what she has over the past two days, over the past two's just getting to feel unbearable. This is our second night at Children's hospital and we are still attempting to figure out the cause behind Emri's rapid breathing, rising heart rate, reoccurring fever and now we have added dropping o2 levels and low blood pressure. She's being wheeled out now with Brett for a lung x-ray to rule out pneumothorax (lung collapse)... among other things.
I do in fact believe that our God is holding her in His hands and that there is a plan set in place for her life. Right now, watching this plan unfold just hurts. I know that I would love Emri even if she had the most rotten disposition- simply because she is my little girl...but I believe it has to hurt more seeing her sweet, endearing little personality dwindle into medicated sleep. The way that she looks at me when I am pinning down her arms while she gets poked time and time again just pierces my heart."

This ^ is what I wrote while staying at Children's-I just never posted it. It was a long, painful weekend and I am so thankful and happy we are home and that Emri is finally coming around to being Emri again. The stay at Children's was nothing less than proved to me once again that we, as Emri's parents, know her the best, and that we are just going to have to be those pushy "annoying" parents sometimes. Let me just say this; I wish that doctors would just admit that they know nothing about neonatal marfan syndrome....  when they know nothing about neonatal marfan syndrome. Emri is the only known case of this rare disease that they have treated at Children's---therefore, none of the doctors can say, "yes we have dealt with cases such as this one." We asked every day, multiple times, from the very beginning of our stay at Children's to have a cardiologist involved while Emri was at the hospital. When the resident doctor would call and ask for a cardio consult we would get the response, "cardio doesn't think this is necessary." REALLY??!?!? I have a daughter with a severely dilated aortic root, mitral valve prolapse, and a heart rate of 170...but it's PROBABLY nothing to worry about. When cardio DID finally come in to see Emri on the last day of our stay at Chilren's, when she no longer had any of the symptoms we were worried about in the first place, I let them know how we felt about the situation. I explained to them that we, as Emri's parents, are trying our best to play defense, so to speak, in Emri's situation. We are attempting to prevent a bedside emergency, and we need them on our team and well aware of the serious condition of Emri's heart. We got a sincere apology from the one cardiologist that came to see Emri, but I don't know if that is enough to change things in the future.
Also, we found our that the night Emri got poked and prodded 6 different times in an attempt to insert an IV was completely unnecessary. The pulmonologists on Emri's case were astounded to find out that this happened without their permission. They said that they never would have given their consent to put her under that much stress and that there were other ways of managing Emri's fluid levels.
And last, but certainly not least...the pharmacist that was filling Emri's prescriptions for her stay in the hospital decided, by his own judgement, that Emri's irbesartan dose was dangerously high and lowered it without asking any questions. I found out after actually looking at her dose the last day we were in the hospital, that they had been giving her a lower dose her entire stay at Children's. Uhg. Just so frustrating.
This all goes to show how unique and un-explored Emri's specific disease is. Brett and I have been feeling intimidated by the fact that we may very well know more about how Emri should be cared for than the doctors at Children's. THIS is why we are so relieved to be getting Emri's spine surgery in Baltimore, at a place where they know Emri's specific needs inside and out.
I am not writing all of these frustrations to slam Children's Hospital...we have had many good and helpful experiences there. More than anything, I write these things to give you a sense of how scary it can be...being a parent of a child with a rare condition...and also to shed even more light on our decision to get most of Emri's treatment and care all the way across the country. Not going to lie, Brett and I have often half seriously joked about a move to Baltimore in our future.
As of now, Emri continues to recover-still a little sleepy and pale-but happy to be home completely mezmorized by that dreaded purple dinosaur once again. She continues to be hooked up to her pump 20 hours a day, and her feeds are still going up every few days.
We are patiently awaiting the arrival of baby brother and can't wait to finally meet him. Emri seems to be getting sick of all the talk about her baby brother---I think she wants the tangible proof that he indeed exists:) Hopefully the next blog will be happy news about the new baby and his healthy, proud big sister. Thank you for all who followed our updates this last weekend....for the thoughts, prayers, and encouragement. We are continually praying God's blessings upon our little girl-but continue to acknowledge his perfect will in every situation.

1 comment:

  1. My heart goes out to you with the frustration you encounter with medical services for a rare disease. Continue your quest of finding an accepting medical professional at Children's, they are there. I know you realize most medical professionals are overworked and passionate for the care of their patients. Unfortunately, you are not finding the ones who goes beyond the extra step. Perhaps contacting someone high up in administration with the challenges marfan brings and the lack of knowledge/expertise Emri is receiving. Let Admin. know your family will be revisiting and revisiting and it will be in their interest to have someone learn more of this illness. Share your post with them.

    My challenges pale in comparison to the many trials as a young family you face with grace and strength. I hope you find comfort in this prayer I have turned to many, many times.

    Prayer of St. Therese of Lisieux,

    May today there be peace within.
    May you trust God that you are exactly where you are meant to be.
    May you not forget the infinite possibilities that are born of faith.
    May you use those gifts that you have received, and pass on the love that has been given to you.
    May you be content knowing you are a child of God.
    Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise, and love.
    It is there for each and every one of us.

    May God continue to hold your family in the palm of His hand,