This is Dan,
It is incredible to think that it has only been five days since Jess had her surgery. Time loses its meaning when you are lost in the hospital cycle of nurse visits every few hours, days bleeding into one another, sunrises bleeding into sunsets, living in three hour increments between administration of drugs. Sometimes it seems like it has been months since the surgery and other times it seems like it has been seconds. There is ever present fear and elation. There are actually times when the two can occur simultaneously. Elation that Jess can stand up on her own, and fear that her wobbly legs will not sustain her trip. Elation that her right hand can now almost fully open, and fear that it will not regain its sensation or dexterity (although Jess says its nice because she can use her numb side for getting shots from the Dr's, and she is getting really good at doing stuff with her left hand). The most significant journey while in this hospital has been attempting to get a handle on Jess's pain management. Jess's pain management has been our most frustrating aspect of our stay at the hospital and remains our largest hurdle to being discharged. In order for Jess to leave the hospital she needs her pain managed by oral medication only, as that is all we can administer on our own. Right now Jess has a regiment of oral medication, and a self-administered limited dosing of medication through her IV. As to date the pain management team working with Jess have yet to make any significant strides in an attempt to limit Jess's need for her IV dosage. We are not willing to leave the hospital until it has been demonstrated to us that their particular drug protocol has a longterm effect on managing Jess's pain.
Its hard to gauge what is working and what isn't because Jess's level of activity has been steadily increasing. She has recently began eating more solid food, going on walks around her floor, walking to the bathroom with minimal assistance. With this increase in activity Jess becomes strained and worn down, often needing a nap after traveling to the bathroom, or meeting with a Dr. It appears to me that it is simply exhausting for jess to be awake. Her body is working so hard on healing itself that there is little energy for other things. Deficits will come and go or vary in degree depending on the severity of Jess exhaustion, or severity of inflammation and healing. Jess needs a nap pretty much after any activity. In similar fashion to life before her most recent surgery, Jess insists she does not need a nap right up until the point she falls asleep.
All and all, Jess is her normal resilient self. Always seeing the best in things, talking with all the nurses, and continually making her parents and I laugh. She really appreciates all the support she has been getting. It has become somewhat of a ritual for me to read her your comments on Facebook and her blog. As of right now, Jess cannot interpret written language. This gives me the pleasure of reading all of your comments to her, and quite frankly I often need to take breaks to allow the lump in my thought to subside. She really wants me to express the fact that she is not in a state where she can respond to anyone but does want to thank you all for the kind words of encouragement.
Prior to Jess being able to walk on her own, we took her around the floor in a wheel chair, because she's Jess and she can't just stay put!!!!
It is incredible to think that it has only been five days since Jess had her surgery. Time loses its meaning when you are lost in the hospital cycle of nurse visits every few hours, days bleeding into one another, sunrises bleeding into sunsets, living in three hour increments between administration of drugs. Sometimes it seems like it has been months since the surgery and other times it seems like it has been seconds. There is ever present fear and elation. There are actually times when the two can occur simultaneously. Elation that Jess can stand up on her own, and fear that her wobbly legs will not sustain her trip. Elation that her right hand can now almost fully open, and fear that it will not regain its sensation or dexterity (although Jess says its nice because she can use her numb side for getting shots from the Dr's, and she is getting really good at doing stuff with her left hand). The most significant journey while in this hospital has been attempting to get a handle on Jess's pain management. Jess's pain management has been our most frustrating aspect of our stay at the hospital and remains our largest hurdle to being discharged. In order for Jess to leave the hospital she needs her pain managed by oral medication only, as that is all we can administer on our own. Right now Jess has a regiment of oral medication, and a self-administered limited dosing of medication through her IV. As to date the pain management team working with Jess have yet to make any significant strides in an attempt to limit Jess's need for her IV dosage. We are not willing to leave the hospital until it has been demonstrated to us that their particular drug protocol has a longterm effect on managing Jess's pain.
Its hard to gauge what is working and what isn't because Jess's level of activity has been steadily increasing. She has recently began eating more solid food, going on walks around her floor, walking to the bathroom with minimal assistance. With this increase in activity Jess becomes strained and worn down, often needing a nap after traveling to the bathroom, or meeting with a Dr. It appears to me that it is simply exhausting for jess to be awake. Her body is working so hard on healing itself that there is little energy for other things. Deficits will come and go or vary in degree depending on the severity of Jess exhaustion, or severity of inflammation and healing. Jess needs a nap pretty much after any activity. In similar fashion to life before her most recent surgery, Jess insists she does not need a nap right up until the point she falls asleep.
All and all, Jess is her normal resilient self. Always seeing the best in things, talking with all the nurses, and continually making her parents and I laugh. She really appreciates all the support she has been getting. It has become somewhat of a ritual for me to read her your comments on Facebook and her blog. As of right now, Jess cannot interpret written language. This gives me the pleasure of reading all of your comments to her, and quite frankly I often need to take breaks to allow the lump in my thought to subside. She really wants me to express the fact that she is not in a state where she can respond to anyone but does want to thank you all for the kind words of encouragement.
Prior to Jess being able to walk on her own, we took her around the floor in a wheel chair, because she's Jess and she can't just stay put!!!!
