Hi everyone,
I finally reached Dr. Long, via phone. He shared with me that Corey’s shunt is now at 120. She will have a follow up CT next week to take another look at the ventricles. When the Doctors decided to turn the shunt on, they were hoping it would relieve any residual pressure resulting in igniting consistent neurological responses. If her responses improved, it would tell them it was the hydrocephalus. If they didn’t, it would indicate that her delay was from the severity of the brain injury.
Corey is maintaining her CRS score, not achieving a higher score. She is consistently inconsistent in therapy; both are working against our fight. Once again, not the answer we want to hear. There may not be enough evidence to help us fight for more time.
Bryn Mawr is an acute rehabilitation hospital. The best comparison to explain our position would be for any of us to have general surgery but insist we be admitted to the ICU to recover. Bryn Mawr is the ICU of rehabs. Corey is stable now and technically doesn’t need the services of an acute hospital despite her need for therapy.
We have to begin to find a sub acute skilled nursing facility that will take an 18 year old, offer the same quality/quantity of therapy hours and is within commuting distance. Until Corey gets further along in her recovery, taking her home is probably not an option. We can not provide for her needs at her current physical/cognitive level. We have some leads on a few places and have begun the evaluation process.
Needless to say, this was yet another overwhelming reality check that it’s time to get mentally ready for the next part of this recovery process. Emotionally this is unbearable. We should be looking at colleges not nursing homes. Spiritually this was the pin that poked at the balloon of hope that the timeline of recovery might have momentum and a direction. Tonight I am desperately looking to stop the air from escaping. I know the facts of what we are facing. I know that the pain and sadness we feel is normal. I know the doubts and worry are normal…there are moments “normal” doesn’t matter…it hurts and it’s not fair. So what or who do we turn to? How is faith NOT challenged when we have to accept the unacceptable?
I will be honest with you. I’m struggling with the concept of God. I hear my mother in my heart telling me not to lose faith. “Everything happens for a reason”. “Things sometimes happen in 3’s to teach us what we didn’t hear the first two times”. She would tell us when something was taken from our grasp, it would leave our hands open to receive something new. Look for what’s coming, look for the signs.
After my call this morning, 3 friends from work not only shared their friendship with me, but words of comfort, hope and encouragement as well. 3 of Corey’s girlfriends shared hugs, tears and smiles with me. I spoke to another friend via phone. She reminded me that grieving is a part of healing. Right now focus on being grateful for inner strength and resolve. It’s okay to struggle with faith. Rely on the support of others to carry our faith for us until we are stronger to carry it again ourselves. I remember my mother telling me; “People come into your life for a reason. Sometimes they’re sent to you and other times you are sent to them”.
Corey, this time we are definitely on the receiving end of that statement. It’s been said that each person is a reflection of God. That He lives in each of us. This was proven today and why we can hold onto faith for one more day. 3 times 3, we received love, friendship, compassion, encouragement and hopeful intentions from people that were sent to us. We can be grateful for the friends and family that are speaking the words we need to hear and giving us the hugs that reassure us that through them He really is with us. It’s all going to be okay sweetie. Let’s keep our hands and hearts open to what our new life will bring us.
Happy dreams, xoxo