Thankful
Friday, November 26 marked two and a half months at Luries for us and Sloan. After these 10 weeks, 70 days, or 1680 hours of hospital functions we have been discharged since there is not much more for Sloan they can do at this time. So we made the drive to finally be at home! It does not come without its shared range of emotions…fears and exhaustion, but maybe some sense of relief for some kind of peace and privacy restored. To be home in our beds is a breath of fresh air. However, we are anxiously awaiting nursing help at home.
Our darling warrior Sloan is nothing short of exceptional through adversity. As she struggles our hearts break as we try to comfort her when nothing seems comfortable. We are not sure the toll the disease has taken. As she stares off in the distance we hope she knows we are here with her and it is Mommy and Daddy holding her hand.
Sloan’s care is round the clock and some may not know what that looks like for us. Let me try to help explain. Sloan’s secretions are relentless. But what do secretions mean? Mucus…all that stuff that pours out of her nose and mouth and builds up in her lungs, airway and into her trach. Her nose drips and bubbles, her mouth the same, and as she coughs to clear the thick mucus we suction her nose, mouth and trach with a machine - like a very small tube to a medical vacuum - to clear the build up as she tries to cough to clear it, and one of us pats/percussions on her chest to help break it up. We do this every few minutes at all hours of the day and night. The disease creates more secretions than the normal amount for a person, but the trach also increases secretions. Double or triple the whammy of snot if you will.
Another major part of Sloan’s new routine is daily trach care. This is when we clean around her stoma (the hole in her neck where the trach goes) and all the skin under her trach ties which holds the trach in place. It’s really a scary task because the trach can come out which can become life threatening if she can not breath. Sloan hates it and coughs the entire time causing lots more secretions since her body is basically trying to reject this foreign object. All this said, Sloan needs both of us with her to help. We know it is not restful sleep for her with suctioning and the sound of the loud machines. When do we sleep? Cat naps when we can between suctioning, so we try to alternate.
Our days are long but gone too quickly with Sloan as we try to soak up loving her with hugs and kisses.
This disease sucks.
The machines are not just loud but a million parts, and we have so many supplies that we must do our best to keep things sterile. Sloan is high risk for any illness that we can not jeopardize germs. What we can not always express in what we share is that what doctors and nurses learn in years and years of school and practice, medical parents and care givers get crammed into a whirlwind of revolving doors of brief instructions and discharge papers. What we can not sugar coat is… we are tired, we are scared and sad but we persist for nothing compares to what Sloan and others like her are going through. So —We got this!
We are forever grateful of the kind words, prayers and generosity of so many near and dear to us and ask for your continued support for our Sloan!
Maggie
