Daddy and Little Hart - March 5, 2010
CONTINUED FROM "LITTLE HART DID WHAT? OH YEAH!"
I wanted to share some of the emails that Raylan and my Mom (Little Hart's Grandma) wrote to Family an Friends toe explain the last part of Little Hart's stay at the Children's Hilton. They moved me, hope they do you as well.
In honor of 1 year anniversary.
MARCH 4, 2010
To: Family and Friends
From: Jill (My Mom and Little Hart's Grandma)
Not much change in Little Hart's condition. The chief MD of Pediatrics at PCMC came and said that most kids that have been in similar situations as Little Hart, who did not pull through, usually were in worse shape upon admittance to the hospital than Little Hart was when she was admitted. However, Little Hart, as of yet, has not turned the corner to that long road of recovery. Little Hart's personality is one of spunk and sass and rarely backs down from a challenge. So we are counting on her spirit to pull her through this. She is fighting like hell. She has a one on one nurse at her bedside at all times and is receiving the best care possible. it is so difficult to sit by helplessly waiting and watching.
Lisa has not been home since she has entered the hospital and Elle has only left to go home to change and shower and go to school. Little Hart and Elle are so close to each other. Elle either sleeps on a couch in the waiting room or in a chair beside Little Hart's bed. She reads all emails and texts to her and tells her all about phone calls from friends and of course, catches her up on all of the girly gossip. Little Hart doesn't seem to hear any of this but her nurse says she hears everything.
It is so difficult to stay in the moment when deja vu of 15 years ago is lurking in the back of our hearts and minds. Sometimes knowing too much is not a good thing.
Thank you for your continued support.
Love, Jill
March 5, 2010
To: Family and Friends
From: Raylan
Little Hart is continuing to improve, may be off ventilator tomorrow. She is still heavily sedated but off the blood pressure meds and the diuretic. She is also breathing about half the time and the machine the other half.
She was septic (infection throughout the body) and has bacterial meningitis (infection throughout the brain covering) - no, not contagious. They told us because of the location of the abscess behind the eye that meningitis had been a possibility but today was the first confirmation that we had. They want us to be prepared for the "possibility" of damage to her brain and to her eyesight. Chances of that?: "we don't know".
She has opened her good eye twice, responded to questions with a nod or shake of the head. When she opened her eye the first time she wrote on a piece of paper in legible writing- without looking at the paper: "WHERE IS MY DADDY? I WANT MY DADDY."
A few hours later she drew on a white board: an eye, a heart and the letter U
Raylan
March 6, 2010
To: Friends and Family
From: Raylan
Had a good night, xray showed less fluid, they just pulled the breathing tube and she's doing ok with forced warm air, still on a feeding tube, is pretty depressed today, off her sedative, writing on a board as she isn't supposed to talk for a few hours
Now talking, being very sweet and funny and laughed a few times and smiles over her funnies.
Already talking about Elle is going to be her slave.
Dad has a huge smile on his face.
March 7, 2010
To: Friends and Family
From: Raylan
Little Hart is improving - off ventilator and feeding tube. Still in ICU but in non-critical room. Has some of her IV's out and is only on antibiotics now. Good progress since late Friday night.
Doctors told us yesterday that she was just hours from having a very different outcome when she went septic Monday night. After sepsis occurs in someone her age only has about six hours to start receiving treatment, before that treatment becomes completely ineffective.
Thank you and thank all those you shared Little Hart's situation with, who prayed for her recovery- I wasn't as aware at the time as I am now that she would need every one of those prayers.
Raylan
To: Family and Friends
From: Jill (My Mom and Grandma to Little Hart)
Little Hart continues to make improvement towards restored health and healing. She no longer has the breathing tube, feeding tube, is off all blood pressure medication and six IV lines have been removed. She has been released from the ICU into the general population of the hospital. She is so grateful to be out of there. The ICU at Primary's is a large wing of the hospital with intersecting corridors that never sleep. The temperature never changes and day is captive in lights. Routines are repeated with irritating precision and the cries of children are continual. Once that threshold is crossed, everyone is equal and everyone is humbled. My beautiful niece Trina, who suffered and survived a horrific childhood cancer wrote, "I really don't understand why children should ever suffer." I don't get it either, Trina. All I know is our family has watched too many of our young folks suffer needlessly. I hope to hell that this is it for us!
The plan for today is that she will be sedated in order to remove the line from her jugular and place a new line into the heart center in preparation for continued treatment at home. The drains in her eyes will be removed and her eye will be checked for possible damage. Down the road, when she is healthier, she will be tested for possible brain damage. However, she seems pretty much like herself to me except for the fact that she is extremely frightened that this could happen to her again.
Please pray that the psychological wound will be healed as well.
Much love and thanks to all of you for sailing the rough waters of this journey with us.
Jill